Situating Research Concepts

In this quote by Mia Mingus, the struggle of (dis)Abled communities is vividly portrayed. I selected this quote because it captures the emotions of hyper-visibility, invisibility, and ableism that are central to my thesis. Furthermore, I examined the Government of Canada’s (2019) Accessible Canada Act (ACA) to illustrate that while it aims for positive change, it still gives rise to issues related to hyper-visibility, invisibility, and ableism in how it’s implemented and how it recognizes the diverse and complex nature of the (dis)Abled community, particularly those who use wheelchairs. I delved into various aspects of the ACA, including transportation, the built environment, communication (excluding information communication technologies), and the design and delivery of programs and services. These areas shed light on the lived experiences of individuals as they navigate their daily surroundings, influencing their sense of inclusion or exclusion.

Incorporating my personal truth as a person with (dis) Abilities (PWD) in a creative and artistic way was important to me, as lived experiences are diverse and should not remain static. I chose to present my research through a nontraditional e-portfolio (website) which will incorporate several different mediums such as my academic research, poetry, artwork, videos, and children’s literature. The e-portfolio development and introduction are based on the reflective practice of its creation and allow students to document and share a cohesive non-traditional thesis presentation. It also brings together a practical and comprehensive analysis of their lived experiences.

Firstly, I asked what does research mean? Simply, research is a scientific, systematic, and creative practical work with a view to producing new knowledge. Concepts specify features, attributes, or characteristics of a phenomena under investigation. Research is the most powerful tool for getting accurate and real knowledge on a particular topic (Solinger et al., 2023).

Invisibility is defined as being treated as if one is not seen. Being dismissed, devalued, ignored, and discredited by others due to one’s perceived inability (Torres-Harding et al., 2012).

There is a complex relationship between power and (in)visibility. Individuals are at times categorized by some able-bodied people in an attempt to decide what is palatable and respectable within mainstream society, this may create feelings of exclusion and under-appreciation (Binder, 2022).

Hyper-visibility is the notion of receiving scrutiny based on perceived difference. At times this scrutiny may result in unwanted attention or preferential treatment that is unsolicited (Settles et al., 2019). Members of marginalized communities experience the distress of hyper-visibility in the workplace and beyond—the feeling of being overly visible because of an individual’s (dis)Ability, sometimes to the point of overshadowing their unique skills and personality (Gutierrez Aza, 2020). Hyper-visibility may also occur through dialogue with a diverse range of people that reproduce a cycle of discussion and response in how (dis)Abled people should be represented as powerless and in need of help.

Ableism is a system or set of beliefs and practices that places value on people’s bodies and minds based on certain criteria such as normalcy, intelligence, excellence, and productivity. This system often leads to the promotion of a particular ideal standard of an able body, which is sometimes referred to as the golden standard (Hehir, 2002). Ableism can manifest consciously and unconsciously in various aspects of society, including the workplace, interactions with (dis)Abilities professionals, the general public’s attitudes, and issues related to the built environment and physical access. In this system, (dis)Abled individuals who can meet the ideal standards of intelligence, productivity, and excellence tend to receive rewards and benefits at bodily, structural, and societal levels (Campbell, 2019; Lewis, 2021).

In essence, ableism is a discriminatory system that values certain abilities and characteristics over others, leading to unequal treatment and opportunities for (dis)Abilities individuals (Eisenmenger, 2019). Additionally, ableism is the act of devaluing of PWD while asserting that it is better “for a child to walk than roll, speak than sign, read print than read Braille, spell independently than use a spell-check, and hang out with non-(dis)Abled kids as opposed to other (dis)Abled kids” (Hehir, 2002, p. 5).

It is important to note that when various levels of access are provided and permission, opportunity is given to encounter someone or something, the relationship between the (dis)Abilities body and mind becomes or starts to become one where hypervisibility, invisibility, and ableism is reduced. Hehir (2002) notes that hegemonic notions of the ideal body-mind would place more important on speaking over signing, walking over rolling, and hanging out with non-(dis)Ability children over (dis)Abilities children. I challenge these norms, as I see equal value in signing, rolling, and building community with (dis)Abilities and non-(dis)Abilities people alike.

Group-based discrimination adversely affects the health and well-being of individuals, eroding their sense of belonging (Mckenzie et al., 2022). This impact is particularly pronounced among underrepresented groups. Despite the World Health Organization reporting that 15% of the world’s population is (dis)Abled, these issues receive less attention (Mckenzie et al., 2022). Over the last decade, Google searches for terms like racism and sexism have been more popular, with racism leading at 43.5% and sexism at 18.1%, while in contrast, searches related to (dis)Ability ranked the lowest at 1.04% (Branco et al., 2019). Relatedly, three Canadian studies highlight the often-overlooked issue of ableism. The first study surveyed 1,537 Canadians, including 534 individuals with physical (dis) Abilities. It revealed significant concerns about ableism and discrimination, such as employer discrimination, lack of accommodations in the workplace, and accessibility gaps in Canadian communities (Angus Reid Institute, 2015). In addition, Employment and Social Development Canada (2019), conducted a survey on public opinion regarding accessibility. Out of 1,350 respondents, 53% (715 individuals) had a physical (dis)Ability, and 932 reported experiences or awareness of ableism; respondents spoke to employment barriers and lack of accessibility in the workplace, as well as transportation and accessibility barriers in the built environment as well as communication and technology. Furthermore, Ontario Human Rights Commission (2017) conducted a survey related to human rights, attitudes towards various groups, and personal encounters with discrimination. Several questions were specifically designed to evaluate people’s perceptions of human rights and the level of prejudice faced by groups that experience discrimination. The composition of the sample closely mirrors Ontario’s real population distribution, reflecting a balance in gender, age categories, ethnic and racial identities, (dis)Ability status, urban/rural population, educational background, and income levels. The study highlights many factors of discrimination, revealing that that only 14% of marginalized groups reported incidences of discrimination in the organization in which it occurred. Notably, 25% of respondents attributed (dis)Ability as a potential cause of discrimination. Comparatively, 63% of respondents believed race and skin colour were the most common discrimination grounds. Overall, 89% agreed on the need for more education about human rights and discrimination. (dis)Ability related data in Canada is usually sourced from national surveys. However, these surveys often lack the sufficient size required to yield reliable data on specific subgroups while maintaining the confidentiality of respondent’s personal information.

The World Health Organization emphasizes mental health and well-being as a state where individuals can realize their potential and cope with life stresses, contributing productively to their communities (Mckenzie et al., 2022). Addressing and dismantling ableism is crucial for the inclusion and growth of individuals with (dis) Abilities. Exclusion and isolation not only undermine the mental health of affected individuals but also the overall health of society. Ableism impacts all aspects of health and well-being this; can and must change.

When I think about my thesis journey, I am privileged to have found a supervisor that knew me and supported my keen interest in collective voice and the complexities that wheelchair users face on a daily basis. After I had finished completing my coursework, I decided to continue with my thesis. It was not an easy road. I learned a lot about the challenges I as a (dis)Abilities graduate student would face, having a scribe, academic attendant, that transcribes all my work for me. I learned the challenges and benefits of a supervisory committee. And I also learned a lot about my own resilience and passion for this work. I found myself in a solitary position during my undergraduate years, grappling with a sense of isolation. It seemed that our curriculum focused primarily on the physical and built aspects of (dis)Ability, with little attention given to the broader societal attitudes. When society’s attitudes were discussed, they often seemed confined to perceptions related to the physical environment. While dealing with my own mental health challenges, I recognized that, for me personally, the built environment and the medicalization of my body were not my primary concerns. I had long accepted my inability to walk, having been a wheelchair user since birth and continuing to be one. However, what proved more challenging was accepting society’s persistent disapproval, which felt like a rejection of my very existence in the world, a sense of not fitting in (Garland-Thomson, 2011). Thus, I grew weary of engaging in the same repetitive conversations, involving constant efforts to prove myself and educate others. I discussed my proposal with the ethics committee, expressing my deep appreciation for the traditional thesis format while also explaining my desire to incorporate my unique creative elements. Initially, it was challenging to envision something so personal to me. I worried that I might not fully honor the academic tradition by pursuing a project I believed would hold significant value for the (dis)Abled community.

I soon recognized that my study had a phenomenological nature, with autoethnographic components that emphasized the exploration of lived experiences. What better way to illustrate these experiences than by harnessing the diverse talents and creative expressions that (dis)Ability can encompass? I began to reflect on my own strengths, particularly in poetry writing, my innate urge to communicate through art, and my aspiration to breathe life into the often-overlooked content we routinely scroll past on social media. While I greatly appreciated the support of my academic attendant, conveying my vision to someone else proved to be quite challenging. Throughout the process, despite my optimism and enthusiasm, there were moments when I felt adrift, unseen, and subjected to various forms of ableism, primarily stemming from institutional bureaucracy and a general lack of comprehension regarding unexplored avenues.

Despite many challenges, I had unwavering confidence in my supervisor’s dedication to realizing my vision. We simply needed to navigate the proper channels. With her steadfast support, we reached out to the associate dean, and my e-portfolio concept gained approval. I felt immense gratitude for the school’s commitment to equity, diversity, and innovation in promoting (dis)Ability awareness, and supporting students with (dis) Abilities through innovative initiatives. I also considered myself fortunate to have a supervisor who not only led our department but also championed the school’s mission. The journey was far from effortless, and there were moments when I grappled with self-doubt due to past experiences and internal struggles. Nevertheless, I believe the impact and dissemination of knowledge stemming from my choices will exceed my initial expectations.

There are few things in my life that evoke a genuine sense of (dis)Ability pride. I extend my gratitude to the school for granting me the opportunity to embrace this true (dis)Ability pride through the decision to create an e-portfolio for my thesis. I hope and firmly believe that it faithfully echoes the voices of numerous (dis)Abilities individuals and can pave the way for a world where (dis)Ability is not viewed as a problem to be fixed but as a source of innovative solutions for driving social change.

Primarily, I questioned how hyper-visibility and invisibility impact the daily lives of wheelchair users, and what role does ableism play in these phenomena. Drawing from firsthand experience, contemporary strategies heavily depend on the biomedical perspective of (dis)Ability, which tends to view it as an issue of the body. Moreover, these approaches often lean on universal design principles, such as creating accessible infrastructure. While these measures are helpful, they only partly contribute to fostering inclusive attitudes and dismantling ableist, non-stereotypical assumptions about PWD. There’s a pressing need for a more comprehensive approach that not only addresses physical accessibility but also promotes recognition and appreciation of the diverse contributions of individuals with (dis) Abilities to society. By investigating these questions and initial insights into the experiences of wheelchair users, my current research study significantly contributes to filling gaps in the existing literature. Primarily, it adopts a first-person voice to delve into the issues of accessibility, inclusion, and the daily experiences of invisibility, ableism, and hyper- visibility faced by wheelchair users. This phenomenological study provides rich, vivid descriptions of lived experiences from a concise, authentic, and action-oriented perspective. Furthermore, it emphasizes the strengths, talents, and assets of individuals with (dis) Abilities and their allied communities. Moreover, the study employs a range of relatable artistic mediums, including poetry, art, and video, to underscore the complexity of these issues while enhancing relatability, raising awareness, and broadening audience engagement.

Highlighting a crucial message, Degenholtz et al. underscore that “yesterday’s unrealistic expectations can become tomorrow’s standards” (1997, p.775). This stands in solidarity with individuals with (dis) Abilities and their advocates, striving to enhance the visibility of (dis)Abilities professionals and leaders in various spheres – from restaurants and grocery stores to shopping malls, workplaces, and social spaces. By advocating for the implementation of equitable and inclusive programs and services, my study shines a light on the diverse and collective capabilities of all bodies and minds, guided by a powerful principle: see us, hear us, ask us. I aim to shed light on the intricacies of lived experiences while navigating the world in a wheelchair. These experiences are further complicated by the multiple roles and advocacy responsibilities shoulder by wheelchair users, including the challenges they encounter when dealing with societal perceptions and interactions that can evoke feelings of invisibility, hypervisibility, and ableism. It is time to address these concerns openly, moving beyond bureaucratic practices and instances of ignorance or lack of awareness. I firmly believe that sharing experiences, insights, and voicing concerns fosters a culture of collective voice and creates safer spaces for individuals with (dis) Abilities and wheelchair users (Mingus, 2011).

The introduction section of my portfolio introduces essential research concepts in the context of my study, including ableism, invisibility, and hyper-visibility. It also establishes my role as the researcher, outlining my intentions and the challenges encountered throughout my thesis journey. I delve into my research question and provide a concise overview of my e-portfolio’s content. After a brief introductory section that sets the stage, I define my research concepts list my main questions, and situate myself with the research. My e-portfolio comprises the following key components:

1. Theoretical Framework and Methodology: This section serves as the intellectual foundation of my research, elucidating the theories and methodologies that guide my work. It includes discussions of auto-ethnographic and phenomenological approaches, which shape the research’s theoretical underpinnings.
2. Relevance to Issues of Ableism, Invisibility, and Hyper-visibility: My e-portfolio delves into the intricate relationship between my research and the pressing societal issues of ableism, invisibility, and hypervisibility. Specifically, it examines how these concepts intersect with the lives of people with (dis) Abilities and wheelchair users, shedding light on the nuanced dynamics that influence their experiences.
3. The Literature Review section examines key themes in the literature concerning the Accessible Canada Act and organizations’ efforts to address It also explores how the act’s approach to equity and equality may hinder full participation in society for individuals with (dis) Abilities.
4. In the Discussion section, I present findings related to participants’ experiences with invisibility, and hypervisibility, and Four key themes within this chapter are discussed further.
5. The Conclusion section of my e-portfolio not only summarizes the future directions for social work research but also outlines my dissemination plans. These plans are deeply rooted in the strong foundation and principles of co-learning and co-collaboration, which align with phenomenological These shared experiences and principles not only support the unique diversity within (dis)Abilities communities but also form the bedrock of sustainable (dis)Ability justice.
6. The Recommendations section summarizes the suggestions from participants for creating a world where they can feel heard, seen, and valued. Through this thesis research, the participants and I offered some of the ways this can start to happen.

In 2019 the government of Canada The Accessible Canada Act, a groundbreaking federal legislation, sets the ambitious goal of achieving a barrier-free Canada by 2040. Central to the ACA is the principle of “Nothing Without Us,” emphasizing the necessity of involving persons with disabilities in the development of laws, policies, and programs that affect their lives

The Accessible Canada Act addresses several critical issues, including the use of American Sign Language in deaf communities, the impact of transportation on First Nations communities with disabilities, and the significance of sports and recreation for persons with disabilities. Given that this legislation serves as a benchmark for inclusivity and accessibility in various organizations, it’s essential to assess its effectiveness. This involves examining potential challenges such as ableism, hypervisibility, and invisibility. By delving into the complexities of these issues and evaluating the measures in place to improve the well-being of persons with disabilities, we can better understand the Act’s impact and identify future directions for advancement.

I have chosen to focus on the deaf community because, as highlighted in my literature review, the ability to communicate profoundly influences how individuals interact with others and perceive the world around them. Personally, my identity is deeply intertwined with my ability to communicate and express ideas. This ability transcends the limitations of my physical body, and I find it difficult to imagine its absence. This is particularly relevant for the deaf community, who often have limited access to American Sign Language (ASL) or face societal underestimation of its significance. The prevalent issues—ranging from convenience to lack of knowledge, or even ableist assumptions that minimal communication suffices—can lead to feelings of invisibility, hyper-visibility, and ableism. This hinders individuals from reaching their full potential in various aspects of life, including simple daily interactions, medical consultations, and workplace communications.

Similarly, in my exploration of sports, I noticed a significant correlation between sports participation and positive impacts on feelings of visibility, invisibility, and ableism. My personal insights, alongside the literature, suggest that sports help individuals with disabilities move beyond the physical and functional constraints of their bodies. In these more accepting and welcoming environments, there’s a natural support for diverse modes of communication, including ASL.

This concept extends to First Nations communities, especially in terms of transportation. For First Nations individuals with disabilities living in rural areas, transportation is a critical factor. As I previously stated in my literature review, the well-being of First Nations people, disAbility notwithstanding, hinges on their ability to contribute fully to their community. This not only meets a community need but also fulfills an individual’s desire for purpose. My research indicates that these communal relationships and individual purposes significantly decrease disease rates in these communities. Thus, transportation emerges as a crucial element in revitalizing these vital social determinants of health.

To summarize, the environments we inhabit and the attention given to nurturing specific needs within these environments—be it the need for sports, transportation, or ASL—profoundly impact our ability to realize our personal truths and potentials

I decided to use the table of terms and purposely did not make them with any citations. The purpose of doing so was to keep the definitions as plain language, so that they are relatable. Also, since phenomenology is in essence the study of experience, all the terms could have different meanings to each reader and viewer based on their personal experiences. That said, I didn’t want to attach a name or ownership to a definition because each experience is unique, and I wanted to encourage the fluidity of the terms so that we can learn them. Although there are definitions attached to these terms that are explained further by literature review, by opening with relatable, every day, plain language, I hope to give readers and viewers the opportunity to ponder how they relate to these terms in their own life, and how they may wish to challenge the terms in their mind’s eye. Lived experience and the study of lived experience does not come with a definition.

Therefore, I believe that the terms that encapsulate lived experience should not come with fixed understandings. As a graduate student, I’m bound to show my academic competencies and knowledge around certain language, so I have done so. But I have mixed it with my ability to be relatable, fluid, and open when it comes to thinking about and describing lived experience. Any name or author I would stick with the definition does not diminish or validate the experience for the individual that is going through it. The individual that validates their own experience should be the individual experiencing it, not the individual talking about or writing about it. These are some of the reasons why plain language is so important. If we want to create (dis)Ability awareness, I think it is imperative to let people know that you can talk in everyday, plain language, and it can be just as powerful, incredible as something that is backed up by scholarly research. The richness we hold in understanding our own lived experiences and giving our perspective is a richness that can’t be matched to academic language, and I wanted that to come through in the first part of the literature review. (dis) Ability and wheelchair users ’experiences are complex. We owe and deserve the right to not have our truth complicated or hidden under academic jargon and understandings.

Below is a concept summary table for this section:

Systematic oppression is often rooted in historical mistreatment, a legacy evident in structures like the eugenics movement and ugly laws. Despite more progressive modern ideologies, these historical contexts continue to shape power imbalances, fostering ableist assumptions. This leads to issues of invisibility, hypervisibility, and persistent ableism (Goethals et al., 2020). As Owens (2014) notes, contemporary experiences under the medical model of (dis)Ability do not seek to eliminate (dis)Ability; rather, they focus excessively on medical documentation and verification. This approach sidelines the invaluable insights of individuals with (dis) Abilities, who are the true experts on their experiences. While outright eradication of (dis)Ability is no longer the goal, societal attitudes often create conditions of invisibility. These beliefs may place undue blame on individuals for their impairments while neglecting the environmental factors that contribute to these challenges (Owens, 2014). Societal shifts from ugly laws and the eugenics movement directed attention to rigid expectations for bodies to adapt to environments, rather than the reverse. This perspective is further marred by the entrenched belief among some researchers and scholars that (dis)Ability is a phenomenon that is inherently negative, overshadowing the need to revise our societal practices and attitudes. Recognizing that we, as a society, have the power to influence these outcomes is crucial for fostering a more inclusive and adaptable environment (Goethals et al., 2020; Koch, 2001; Macfarlane, 2021).

The Birth of the Clinic refers to a perception that situates disease and illness among practices about birth, death, and medical knowledge (Foucault, 2002) The medical gaze is an example of hyper-visibility, due to the unwanted attention PWD. It was first introduced in the mid- 20th century as a term for gazing into bodies using x-rays and other scans (Foucault, 2012). The ugly laws are an example of invisibility (being unseen), as PWD were locked away out of sight, due to their appearance being disturbing to the general population. The ugly laws were first introduced across American cities in the late 1800s. Their purpose was to maintain and keep the unsightly out of public attention so that their physical appearance would not offend others (Hansen et al., 2018). Though discriminatory, family’s abode by these laws because (dis)Ability often brought shame and rejection to the family unit, as these individuals were deemed unworthy of residing in mainstream society, which caused feelings of invisibility among the (dis)Abled community. These laws were such that if individuals with a (dis)Ability went out in public, they would be arrested and charged (Hansen et al., 2018). Families resorted to hiding their family members with (dis)Abilities in attics or basements in part out of fear their family’s status would be devalued, and in part as a measure of protection for their (dis)Abled loved one (Schweik, 2009).

Physical (dis)Abilities, resulted in the medicalization of one’s body, and the ugly laws deemed one’s body illegal (Schweik, 2009). (dis)Abled people faced a double stigma due to their (dis)Ability. The eugenics movement was designed to control the reproduction of certain blood strains; individuals were unfit to reproduce. They were believed to have had a genetic mutation causing (dis)Abilities (Schweik, 2009). Therefore, both practices were established to facilitate the elimination or disappearance of (dis)Abilities, which was a catalyst event that started feelings of invisibility and hyper-visibility (Hansen et al., 2018).

In the late 1800s, Francis Galton coined the phrase eugenics (Hansen et al., 2018). In the early 1900s, the eugenics movement formed. This movement believed that forced sterilization and controlled reproduction of PWD would eliminate the genetic strain that causes (dis)Ability (Hansen et al., 2018). Lastly, institutionalization was implemented to segregate from society Inside these institutions, PWD experienced sexual assault, physical and mental abuse, starvation, unsanitary conditions, and other forms of maltreatment. PWD were hidden away from the world. However, today (dis)Ability is more visible within society (Zucker, 1977).

In this next section, I will provide statistical data showing the prevalence, and complexities of (dis) Abilities. The Canadian Survey on (dis) Ability (2022) revealed that 27% of Canadians aged 15 and older, amounting to 8.0 million individuals, are living with one or more (dis) Abilities that limit their daily activities. This represents a 5-percentage point increase from 2017, where 22% of the population, or 6.2 million people, reported (dis) Abilities. This rise is attributed in part to an aging population and a significant uptick in mental health-related (dis) Abilities among youth and working- age adults. Additionally, this survey highlights that 72% of PWD faced barriers when accessing indoor and outdoor public spaces, a concern reported by six in every ten individuals (Canadian Survey on (dis) Ability, 2022). This data underscores the ongoing challenges in public accessibility and the need for comprehensive solutions to support the (dis)Abled community.

According to Morris et al. (2019) a (dis)Ability can be defined as progressive, experiencing limitations that worsen over time, recurrent/fluctuating, ailments with periods of a month or more without experiencing limitations, and continuous, a (dis)Ability that remains stable for an extended period. Out of the 3.8 million, 1.4 million (37%) experienced progressive impairments, over 1.5 million (41%) experienced recurrent impairments, and 0.8 million (22%) experienced fluctuating impairments (Morris et al., 2019). Continuous is a controversial definition of (dis)Ability and is commonly the most considered definition by the Ontario (dis) Abilities Support Program (Morris et al., 2019). However, three to five people with (dis)Abilities do not fit the definition of continuous, such as individuals with mental health disorders. Their (dis)Abilities are considered episodic, which would not place them into the continuous category. When determining the eligibility for support, agencies directly impact how these individuals will live, while maintaining a sufficient quality of life (Morris et al., 2019).

From my personal understanding of the statistical data, (dis)Ability does not affect only one person; it proves that it is a predominant social and physical reality for many nationally. Therefore, ableism will be more instinctive and difficult to break. In addition, some ableist beliefs are based on cultural norms and/or learned behaviour; with the vast number of Canadians with (dis)Abilities, there is a clear connection to why stereotypical and ableist views are used as a default response in everyday interactions. Exploring the origins of ableism is essential to understanding where default responses may resonate.

Ableism originated from the (dis)Ability rights movement in the United States and Britain during the 1960s and 1970s to serve as a logical equivalent to sexism and racism related to the biological and social study of (dis)Ability evolution (Wolbring, 2012). Some people see their impairments as inherently and naturally horrible, which can lead to feelings of hyper-visibility and/or invisibility. Ableism presents a set of pervasive practices and beliefs that valorize the normal body. The average body is one impeccable function that holds the body to perfection, and typical bodies are functional in appearance (Campbell, 2019). Therefore, the body earns its place as productively contributing to society. Ableism can be used interchangeably with (dis)ableism.

(dis)Ableism refers to prejudicial beliefs and practices towards an entire population based on their characteristic of impairment. However, if prejudicial behavior and beliefs are aimed at a whole population, everyone is impacted differently (Campbell, 2019). According to Hehir (2002), ableism is the act of devaluing PWD while asserting that it is better “for a child to walk than roll, speak than sign, read print than read Braille, spell independently than use a spell-check, and hang out with non-(dis)Abled kids as opposed to other (dis)Abled kids (Hehir, 2002, p.5).

Often it is assumed that all impairments are the same; this is a sweeping generalization. Societal-level prejudice is a significant level of ableism due to the vast interactions with media, behavioural norms, and peer influence (Amundson & Taira, 2005). Ableism can sometimes make us believe a situation is fearful when it does not pose a threat. For example, when there is an able- bodied (dis)Abled interaction, everyone may feel a sense of discomfort as to what the appropriate behavioral response should be. Therefore, their reactions could be perceived differently than intended (DePaulo & Friedman, 1998). Accessibility can also play a significant role in creating ableist assumptions and how (dis)Abled individuals experience the world (Gaete-Reyes, 2015).

An architect named Stephane Beel created a museum called the Koninklijk Museum in Midden Africa (Pérez Liebergesell et al., 2021). He was diagnosed with multiple sclerosis and will eventually become a wheelchair user. During the design phase of the museum, he was diligent about the museum being accessible to all individuals, not just able-bodied persons (Pérez Liebergesell et al., 2021). He made sure all entry points to the museum were wheelchair accessible by installing soft ramps, so it would not be obvious they were accessible entrances. Within his design, he also incorporated equal distances between accessible features. For example, ten feet from the entrance to a set of stairs would also be ten feet to an elevator. It is important to remember that “not everything can be bridged, however, it can be made bridgeable” (Pérez Liebergesell et al., 2021, p. 928).

Ableism is perpetuated by inaccessible design and by simply improving design functions of a countertop to have high/low areas where wheelchair users can easily access them can create a more inclusive environment, which relates to more independence. Stephane Beel proves that designing appropriate infrastructure that accommodates all individuals can improve how wheelchair users feel about themselves and improve ableist attitudes toward accessible treatment (Pérez Liebergesell et al., 2021). One way society is trying to move beyond stereotypes and stigma about (dis)Ability is by creating more inclusive and inviting societal spaces. As found in Appendix A, some provinces, such as Ontario, Manitoba and Nova Scotia have provincial accessibility acts, as well as the Federal government’s Accessible Canada Act, all of which address structural barriers to accessibility for (dis)Abled persons (Prince, 2023).

Mainstream ideas of healing are deeply rooted in practices and beliefs that perpetuate invisibility and hyper-visibility in ableism; bodies are either fixed or broken, and nobody would want to be (dis)Abled. Unfortunately, there is a perception that some (dis)Abled people are sad and want to be average. Similarly, some (dis)Abled people may be seen as objects that do not know their bodies, objects of disgust, fascination, and inspiration (Piepzna-Samarasinha, 2021).

Through analyzing the Accessible Canada Act (Government of Canada, 2019), in areas such as transportation; the built environment, including the use of ramps; communication (other than information technology), including ASL; and the inclusive design and delivery of programs and services, many traditional concepts of accessibility and the barriers to accessing the built environment will be discussed. Additionally, readers/viewers will see aspects of the social model being presented. The social model of (dis)Ability is another widely known and understood model that focuses on the failure of a structural social environment to adjust to the needs and aspirations of PWD (Owens, 2014); including the inability of the (dis)Abled individuals to adapt to the demands of society the body plays the role in understanding the complexities of (dis)Abilities but also places the responsibility on society to become more educated in what a meaningfully inclusive society could look like for all persons, including PWD. The (dis)Abled body and mind provide the foundation for what is (present), what has been (past), and what could be (future). Reconfiguring attention on possibilities opens opportunities for innovative social, structural and personal change (Toombs, 2001). While I acknowledge the significance and urgency of recognizing external/and or environmental barriers placed on the (dis)Abled body that originates outside of the individual themselves more must be done. It can be powerful and validating to acknowledge these models and conceivably place some responsibility on society to make changes. However, it often does very little to acknowledge the complex interplay and access fatigue that comes with routines of everyday activism and negotiation of (dis)Ability and full participation in society.

When looking at (dis)Ability models, they often address the what and the why of (dis)Ability, but there is very little focus on the interpersonal when it comes to exploring how PWD cope with assumptions about difference. The general public may have an understanding of the potential discomfort that arises between some (dis)Abled-able-bodied relationships. In my experience, (dis)Ability research is done to improve organizational efficiency, and some research is used for political agendas or human-interest stories (Gaete-Reyes, 2015; Garland-Thomson, 2011; Purc-Stephenson et al., 2017; Sépulchre, 2022; Siebers, 2004; Tarvainen, 2019).

The literature I have drawn on is situated with the private lives of (dis)Abled individuals that affect self-perception, perceptions from others, and socio-spatial relationships occupied by all despite the shared complexity of the everyday challenges faced by many (dis)Abled persons there are ways of being in the world remain diverse From an auto ethnographic and phenomenological perspective, my study findings along with the way I’ve positioned the existing literature was an attempt to close the gap between us and Them. Additionally, taking a both/and approach rather than an either/or approach is a more inclusive way of representing the uniqueness of PWD. For example, instead of being dis) Abled or productive, individuals can be (dis)Abled and productive and need support from both (dis)Abled and non (dis)Abled allies.

Literature is extremely sparse around the Accessible Canada Act. The Accessible Canada Act was intended to enhance accessibility and inclusion for PWD, but critiques focus on its emphasis on procedural elements rather than tangible impacts on daily life. Drawing on insights from ARCH (dis) Ability Law Centre (2018), (dis)Ability rights advocate David Lepofsky and other advocates like Papalia (2022), it becomes evident that a gap exists between our procedures and the overarching goal of creating an inclusive society. To ensure that we remain focused on justice, time efficiency, and community-driven outcomes, this discrepancy must be addressed. The (dis)Ability community has articulated their needs for firm timelines, expert regulatory bodies, and effective complaint mechanisms – elements that are crucial for real-world change but were not fully realized in the Act. While the government has acknowledged these shortcomings, mere acknowledgment does little to convey the Act’s influence on everyday experiences. There is a profound need to paint a picture beyond policy, to illustrate how social, relational, and spatial interactions shape the lived reality of navigating the world with a (dis)Ability. It’s about being in the world as oneself, interacting with society, and bridging the gap between difference and inclusion. I wanted to use it as a gateway to attempt to bring first-person voice to so many issues that are typically tied up in bureaucratic practices. These practices have the potential to create conditions where ableism and capitalism can thrive, contributing to the invisibility and hyper-visibility of (dis)Abled persons. My study addresses gaps in the literature around (dis)Abled leadership, opening up many avenues and possibilities to explore the everyday experiences of PWD, allowing them to become natural leaders in all spheres of life (including at the policy level). I successfully brought my first-person voice to this project. I wanted to discuss (dis)Ability in a more relatable way, since as an electric wheelchair user, I identify myself as an ally to my participants and I see various parts of my story intertwined with their own. Instances of invisibility, hyper visibility and ableism are part of everyday experiences for many (dis)Abled individuals. These natural attitudes (the unquestioned assumptions society may hold about (dis)Abled persons affect experiences of the environment, interactions with others, and potential policy-level changes.

It is imperative to note that working towards a more accessible and inclusive Society can benefit everyone. The world may not be accessible, but (dis)Abled voices in my study bring a refreshing look to what it’s like to color individuals human (with no labels). We are waiting. See Us, Hear us. Ask us.

In the following section I will explain in detail what some individual organizations have begun doing to fulfill their mandate and how these approaches are related to phenomenology.

However, due to the length and complexity of the consultations, I will only be discussing areas that I feel can be addressed through a phenomenological lens. I will then conclude this section by making connections on how these consultations can lead to issues of ableism, hyper-visibility, and invisibility.

The categories I chose are areas that I believe PWD, and able-bodied individuals interact with each more frequently. I feel that these categories can provide a varied perspective based on individual’s physical ability, by showing how they can affect individuals in different ways, based on their lived experiences. Life worlds is a phenomenological term defined as a taken for granted world (Schutz & Luckmann, 1973). This can explain many things about how we experience and interpret our worlds and provide insight into the many affordances that are provided by things like, transportation, the built environment, communication (other than information technology), and design and delivery of programs and services. Affordances are defined as a resource or support that provides possibilities for action. For example, a chair has the possible action of being sat or stood on, depending on the individual’s physical ability (Goettlich, 2011). If these affordances are not accessible to everyone, this could lead to feelings of hyper-visibility, invisibility, and ableism towards PWD.

When discussing transportation, I felt it was pertinent to bring attention to the challenges First Nations communities face in this area. (dis)Ability is challenging and can become further complicated by lack of cultural safety, which means having an ally who understands and is part of the cultural community, this is due to transportation policies (Happell et al., 2023). The policy dictates that if the individual can travel alone, they cannot have a support person travel with them.

Within phenomenology when the outer horizon (the policies) effect someone’s perceived needs, it can affect their inner horizons, meaning what their perception of access and inclusion should look like. It is important to consider that even though perceptions may be individual, they can provide important insight into possible improvements that would help suspend the natural attitudes that (dis)abled individuals have the same needs. Another challenge faced by PWD in First Nations communities, is the scheduling conflicts between HandyDART and the health connections bus (Mirza & Hulko, 2022). These are typical issues with any transportation service that provides support to the (dis)Abled community which is further compounded by the remote location and lack of available funding, leading to issues of hyper-visibility, invisibility, and ableism.

The built environment involves how people navigate and take up physical space in their environment and surroundings. Spatiality is a critical concept in phenomenology and can give insight into the relational aspects of (dis)Abled people’s lives, and the implications of what can happen when accessibility is not immediately accessible and properly maintained (Dufour, 2022). When considering the built environment, a PWD can feel both inclusion and exclusion. For example, when visiting a historical site, you can appreciate the beauty and essence of the structure and its history, however, you can feel a sense of frustration with not being able to access the site due to accessibility constraints.

Communication (other than information communication technologies) is a way individuals chose to communicate with each other through American Sign Language (ASL) and can convey a significant amount about their perception and experiences of the world. Communication can also be used to bond and share with others, however, when the preferred communication is not available and/or the flow of communication is interrupted due to hearing loss, the sense of inclusion within a conversation can be affected. When Deaf individuals are also wheelchair users, this may compound their feelings of hyper-visibility, invisibility, and ableism, as family members may have to or choose to interpret conversations in a condensed manner for ease of translation. Deaf individuals can become aware of themselves through the eyes of other people, bringing into question certain forms of pre-reflective self-consciousness (Zahavi, 2016) Within phenomenology pre-reflective self-consciousness means the roles, actions, behaviours, and habits of an individual based on their perceived understanding of socially constructed expectations (Zahavi, 2016). This means that an individual can adapt their understanding or themselves based on what the socially accepted behaviour should look like in any given situation (Merleau-Ponty, 2002). This can be challenging, as not all perceived behaviours can be adapted, due to (dis)Ability.

The design and delivery of programs and services is a way to explore the experiences of (dis)Abled individuals through the sports arena. Intentionality is a phenomenological term that regulates responses and actions, by integrating the lived experiences of PWD with able-bodied individuals (Styhre, 2004). Additionally, sports are used as a tool to integrate (dis)Ability more positively into society, by using a phenomenological attitude that focuses more on ability rather than (dis)Ability (Styhre, 2004). Both individually and as a community, there is an intentional practice to strive to be the best version of yourself and sports is one part of a wider phenomenological assemblage (a gathering of things or people), which could include building a stronger self-esteem, determination, adaptability, teamwork, and independence. Additionally, through education and films like Rebound, feelings of hyper-visibility, invisibility, and ableism can be counteracted, by bringing awareness to the abilities of all athletes, not just able-bodied.

The Canadian government is aware of the ableist interactions, faced by PWD, this includes but is not limited to above mentioned areas, which includes transportation, the built environment, communication (other than information communication technologies), and the design and delivery of programs and services. In response to these issues, and the government’s efforts to create a more accessible Canada for all, the Accessible Canada Act was established. The Accessible Canada Act (ACA) was established in July of 2019 and was focused around creating a more accessible Canada for all Canadians (Employment and Social Development Canada, 2017). The goal of the Act is to achieve a barrier-free Canada by 2040. As part of the Act, federally regulated entities must each develop and publish their first Accessibility Action Plan by December 2022. Some of the organizations involved were the British Columbia Aboriginal Network on (dis) Ability Society (BCANDS), Accessibility Legislation Consultation for the Province of British Columbia. The Act, together with the Accessibility Strategy for the Public Service of Canada, upholds the Nothing Without Us principle. This means that PWD must be consulted when identifying barriers, and in planning for how to remove and prevent them. The seven priority areas were 1. Employment, 2.

The Built Environment, 3. Information and Communication Technologies, 4. The Design and Delivery of Programs and Services, 5. The Procurement of Goods, Services and Facilities, 6. Transportation, and 7. Communication (other than Information Communication Technologies). I will be focusing on Transportation, The Built Environment, Communication (other than Information Communication Technologies) and The Design and Delivery of Programs and Services. I chose these areas because I believe they provide a good representation of how individuals must navigate their world and how society chooses to perceive them. I believe these can provide clear examples of how things currently are and why we need to improve them.

Transportation is one-way individuals navigate places and spaces within their communities. It is important that transportation be accessible to all. This is a critical issue for under serviced First Nations communities.

BCANDS focus on issues surrounding transportation, the areas of concern were equal access to available transportation, regardless of their address. The (dis)Abled indigenous people should not have to worry about how much the cost will be and how they will be able to get to scheduled appointments. From a phenomenological standpoint, it is imperative to focus on the life world of individuals being affected. First Nations communities believe in living relationally, while cultivating mutual respect and trust through relationships. While doing so, they expand their world views and/or life worlds personally, spiritually, and culturally (Burnette et al., 2011). There is a significant financial and emotional cost when it comes to having to transport Indigenous community members for medical treatment (Seidel et al., 2022). For example, being informed of an appointment at the last minute and not being able to access transportation.

Other examples include transportation being scheduled at wrong times and transportation not showing up at the assigned time (Seidel et al., 2022). There were issues discussed around non- street address locations, such as P.O. Box addresses, because transportation companies were unable to locate them (Seidel et al., 2022). There is also an issue with the distance to reach medical assistance and the transportation needed to access these locations (Mirzo & Hulko, 2022). First Nations people living off reserve have difficulty receiving funding for transportation because of jurisdictional issues (Durst et al., 2006). There is no compensation for the family of the (dis)Abled person who are providing care and those supports can burn out fast. For First Nations people being (dis)Abled means a lifetime of dependency of hopelessness and despair with the continuous struggle to access resources and services (Durst et al., 2006). The health of First Nations people focuses on their ability to bring full potential to their community (Bailie et al., 2016; Cercarelli et al., 2000; Tziotis & Turner, 2010). First Nations communities respect and honor the gifts of their (dis)abled community members. However, their transportation needs are not adequately met, which can impact their sense of self and contributions to their community (Bailie et al., 2016; Cercarelli et al., 2000; Tziotis & Turner, 2010).

The Non-Insured Health Benefits for First Nations and Inuit’s (NIHB) allows for coverage of one non-medical companion for an individual who cannot travel alone, due to physical or mental impairment, if it is outside of their home community (Bell & Brant, 2015). The issue with this program is that some elderly (dis)abled people may be able to travel alone, however, they feel more comfortable having a family member accompanying them (Bell & Brant, 2015). This represents how the physical health of the First Nations residents can be affected by lack of transportation. I feel it is important to also discuss the affects transportation can have on the cultural aspects of First Nations resident’s daily lives.

According to the regional health survey, which is the only First Nations governed longitudinal health survey in Canada (First Nations Information Governance Centre, 2018). First Nations adults who are reported to be more involved in cultural elements of their community, relay spiritual, mental, emotional, and physical satisfaction, and balance. As a result, this leads to preservation of language and transmission of culture. This can also lead to reduced suicide rates upon the reserve (First Nations Information Governance Centre, 2012). The importance of community and culture must not be underestimated, for First Nations people involvement within these areas, helps with lowering disease rates, higher cognitive functioning and reduces vulnerability and disengagement (Kingsley, 2015; Pace & Grenier, 2016; Mckenzie et al., 2022).

Understanding the importance of the role transportation plays in the daily lives of PWD is a crucial part of improving available resources, accessibility and participation in community and cultural events (Bailie et al., 2016 Cercarelli et al., 2000). Transportation is used to relate to others in a relational manner as one interacts with their environment. Transportation can be used as a vehicle to create familiarity with your environment, and help you interact with those around you. The built environment also affects the completion of daily tasks, routines, and interactions.

Accessibility Legislation Consultation for the Province of British Columbia (ALCPBC) addresses issues such as the built environment, communication (other than Information Communication Technologies), and the design and delivery of programs and services.

The built environment focused on entrances, sidewalks, parks and parking and the importance of ongoing maintenance, proper signage, and wayfinding tools such as landmarks, lighting, footpaths, landscaping, urban design, and architecture. Architectural phenomenology suggests that the essence of the human experience can be cultivated in the material world (Boys, 2017). To do this, architecture must be designed in a manner that is full of care and releases assumptions that architecture should only cater to the able-bodied (Boys, 2017). We must take a more phenomenological approach and focus on the relational encounters between people, spaces, and objects. These interactions are shared, but often contradictory, due to the prioritization of certain types of bodies and experiences over others (Boys, 2017). Historically, architecture has been designed around healthy and able-bodied individuals, who do not have issues being able to access any part of the design (Carel, 2007; Kidd, 2012).

By drawing attention to users with physical (dis)Abilities, an empathizes is put on a situation that is distinct from the spatial experiences of the able-bodied (Soltani & Kirci, 2019). The importance of the body in spatial experience cannot be underestimated. Some architects attach importance to emotions when it comes to spatial experiences, as they understand meaningful architecture leads to a full and meaningful participation within society (Soltani & Kirci, 2019).

This viewpoint takes a relational and functional approach that prioritizes human well-being and narrows the gap between time and space. By this, I mean wheelchair users are not restricted by the extra time it takes to navigate inaccessible spaces and can focus their energies more on the enjoyment of the activity at hand (Kafer, 2013). Additionally, it is important to consider that accessible spaces successfully bend to crip time, meaning that these spaces cater to bodies and minds that may fall outside regular clock time (Kafer, 2013; Ljuslinder et al., 2020; Samuels 2017).

Phenomenological terms inner horizon and outer horizon used to help when an individual is trying to recognize situations, structures, or objects (Merleau-Ponty, 2002). For example, if a wheelchair user approaches a building and notices that there are no ramps and only stairs, this is the outer horizon. In turn, their inner horizon tells them that the building is inaccessible (Ratcliffe, 2019). Focus needs to shift drastically to improve accessibility for all and not use the natural attitude individuals who have accessibility constraints can adapt to the issues surrounding the built environment (Carel, 2007; Kidd, 2012). Accessibility goes beyond the physical environment. Being able to communicate effectively with others also determines feelings of inclusion in everyday interactions.

Communication (other than Information Communication Technologies) deals with American Sign Language (ASL) and the barriers associated with this form of communication. I found it interesting to learn, that a lot of parents with deaf children do not sign to them at home, and that almost 95% of deaf children are born to fully hearing parents (Masten & Palmer, 2019). Phenomenological issues arose in the way deaf individuals understood and interacted with the world around them (Meek, 2020). Incidental learning was highly prevalent within the Deaf community, this form of learning occurs through everyday conversations with others as well as the ability to overhear conversations in a hallway, on the radio, etc. (Meek, 2020). Individuals in the Deaf community refers to this as this as the dinner table syndrome (Wolsey et al., 2016). Although incidental learning can happen in the previously mentioned places, deaf individuals feel that most incidental learning happens at the dinner table when trying to communicate with family and friends (Meek, 2020). This interrupts their inner horizons as they are not able to fully participate in the conversation and/or they only receive small amounts of condensed conversation, when it is repeated back to them (Jorba, 2019). Inner horizons are formed when an individual can understand the context of their surroundings and therefore form beliefs and intuition about what they are experiencing, as they are fully able to perceive their surroundings (Jorba, 2019). When an individual can perceive what is happening around them, they become more interested in the topic and are able to create a perceptual experience based on the context surrounding them (Jorba, 2019). For example, when two individuals are sitting by a fireplace, enjoying a cup of hot chocolate, each individual will explain the experience in different ways. One may focus on the smell of the hot chocolate, where the other may focus more on the smell of the fireplace; this is an example of modifications of ideality (Akhter, 2011). Furthermore, our cognitive processes are influenced by inferential associative relations (Akhter, 2011) that occur when we understand the correlation between our inner and outer horizons. For example, even though a deaf individual cannot hear the rain, they can see the rain simply by looking out the window, this is their outer horizon at work.

They will then habitually know that they will need an umbrella before going outside, this is their cognitive inner horizon at work.

In summary, the life worlds of deaf individuals can be affected when they do not have access to proper communication. However, it is important to note that just as language communicates messages to us, my next section will focus on the ability of our bodies to communicate with us through touch when participating in and using sporting equipment.

The design and delivery of programs and services, includes areas such as sports and recreation activities that help to promote a culture of inclusion. The lifeworld focuses on the experiences of being in the world which tear us out of our everyday situations that are taken for granted. This helps us to focus on lived experience by engaging in reflection that seeks meaning on behalf of groups, cultures, or individuals (Adams, 2017; van Manen, 2020). By considering the value of lived experience we reflect on our assumptions about what success entails, given that the fundamental role of humanity is to constantly keep learning and growing. We must act with a sense of intentionality and sports and other types of physical/recreational activities can support us in thinking and acting in ways that support the diversity of our lived experiences (Adams, 2017; van Manen, 2020). Apostolopoulos (2016) describes van Manen’s notion of the flesh as one that integrates sense of touch with objects and the physical body. For example, the use of a wheelchair is an extension of an individual’s legs which acts as a mediator to aid in the participation within a certain type of sport. (dis)Ability awareness through sport provides positive experiences that may help to improve attitudes toward PWD. This may help to increase the self-confidence of the (dis)Abled person themselves to take ownership of their capabilities (Tindall, 2013). The phenomenological expression the seer and the seen could be interpreted as the able-bodied (seer) and the (dis)Abled (seen) this could be related to sports in that the seer is now recognizing that the seen can participate and succeed in a sporting event and that they are no longer a disembodied knower (Cory, 2018)

This means that the able-bodied and (dis)Abled engage in an experience that is interchangeable and connected to one another. The able-bodied begin to learn and invest in the knowledge, training, experience, and skills of (dis)Ability sport and engage in similar attitude, practices, values, and beliefs (Cory, 2018) The term always already refers to pre-existing situations that we may naturally encounter as human beings, this can help us to form awareness and connections to the same embodied subjects (van Manen, 2007). This will still account for differences in perception and experiences; however, a shared bond is formed when athletic ability is validated regardless of ability. It is imperative that wheelchair athletes are respected for the skills that they bring to the sport and coaching should focus on enhancing the ability the athletes possess as much as possible (Coaching Association of Canada, 2011). Coaches may already possess the necessary technical skills to coach athletes with a (dis)Ability; however, they may lack the ability to suspend the natural attitude that coaching (dis)Abled athletes is more of a liability than coaching able-bodied athletes. This is not the case when, for example, a (dis)Abled athlete who plays rugby is not any less physical within the game than an able-bodied rugby player, it is just different in the way the wheelchairs are used. General coaching and (dis)Ability awareness applies principles of human dignity and the phenomenological concepts of welcoming the other, focused attention and emptying the mind (Copper, 2009) This does not have to be done through extensive preparation; however, it does require a sense of phenomenological wonder in which coaches realize what the unique contributions that (dis)Abled athletes bring. Phenomenological wonder does not seek concrete answers, instead it implores that wonder comes from a matter of perspective and a search for meaning. This makes a distinction between knowledge and meaning and is particularly crucial when talking about phenomenological wonder (Schinkel, 2017). In the sports context, a coach may have the knowledge that (dis)abled athletes are playing; however, they may not know all the different skills that the (dis)abled athletes will bring to the sport (Schinkel, 2017). The coach would then have to use imaginative engagement, which requires reflection on what they believe the skills could look like (Vasalou, 2016).

Imaginative engagement and phenomenological wonder must consider temporality, which focuses on time, particularly when they are within the sporting context. The skills that a (dis)abled athlete uses, depend on what is required at that moment in time during the game (Vasalou, 2016). For imaginative engagement and phenomenological wonder to be used correctly, there must be a consideration of the changing nuances in the game and how the players engage with other team members. It is also important that awareness of the (dis)Abled athletes ’contributions to the sports that they participate in, becomes part of the critical consciousness of society. This can be done through films, (dis)Ability awareness and sporting events.

A phenomenological study by (McKay et al., 2020) discusses the reactions of 20 college students to a wheelchair basketball film called Rebound. This is an award-winning film about the journey of three wheelchair basketball athletes, and their quest to win a national title (McKay et al., 2020). Studies have shown that film can assist students in discussing issues that may naturally be labeled as taboo, while bringing forward social issues to support critical thinking and to illicit knowledge through story telling (Brown, 2012). Films have been used as an appealing means of teaching students about (dis)Ability, as they can have a profound impact on (dis)Ability perceptions. Watching them creates a powerful connection through shared emotions as the viewer can become motived to act on the concepts of the film (McKay, 2017).

Common societal beliefs hold that some individuals with (dis)Abilities may have an unfulfilling future due to their (dis)Ability. However, after watching the film, students reported that their critical consciousness was raised as these basketball players were viewed with a source of pride and admiration for their determination. Additionally, mixed emotions of guilt and empathy occurred when student realized that they often may have their own excuses about exercise and motivation even though they are able-bodied (McKay et al., 2020) Students also expressed some guilt around taking their able-bodied Ness for granted and became more grateful for their own physical abilities. It is important to note that inspiration in this context came from a lens of ability rather than simply being inspiring due to their (dis)Ability alone (McKay et al., 2020). The students took part in imaginative engagement as they were able to reconsider what life may be like (in a positive way) without the use of their legs (McKay et al., 2020).

Bringing (dis)Ability awareness through sporting events can have the same impact/reaction as film (Grenier & Bourgoin, 2018). This includes feelings of empathy, raising critical consciousness about what may have been previously taken for granted, appreciation for ability rather than (dis)Ability and an overall understanding of the sense of community that is formed when individuals with similar experiences and mindsets come together (Grenier & Bourgoin, 2018). Indeed, (dis)Ability sports are a vehicle for positive awareness around (dis)ability issues and can help create feelings of inclusion within the (dis)Abled community. In my conclusion, I will discuss how ableism, hyper-visibility and invisibility all relate to the above-mentioned literature.

The Accessible Canada Act (Government of Canada, 2019) demonstrates many issues surrounding ableism, hyper-visibility, and invisibility. Issues of invisibility were spoken about in an ARCH (dis) Ability Law Report (2018), entitled Recommendations for Amending Bill C-81 to ensure a barrier free Canada. The report states the need for a central contact person when dealing with complaints and questions regarding the act. If this is not created, PWD could continue to feel invisible and unheard (ARCH (dis) Ability Law Report, 2018). Additionally, the report discusses that using words such as may instead of shall, creates a lack of responsibility for enforceability. Using the word shall denotes that the government has a responsibility to ensure that the law will advance accessibility in Canada as these regulations and standards are mandatory. Such as the mandatory appointing of a Chief Accessibility Officer, if this position is not filled with someone from the (dis)Ability community, this could lead to feelings of ableism as the collective knowledge of the (dis)Ability community may not be heard (ARCH (dis) Ability Law Centre, 2015).

The act must also come up with a stronger definition of barriers, by adding the word law the barrier definition it would help to ensure that barriers created by federal laws are identified, removed, and prevented (ARCH (dis) Ability Law Centre, 2018). In addition, meaningful participation in society could mean different things to different (dis)Ability groups and this should be monitored by the human rights commission. There are no specific timelines or dates, as to when the benchmarks of the act should be put into place, the timeline of 2040 is an extremely broad length of time for when organizations will have to implement said changes. When it comes to organizations, (dis)Ability may serve primarily as a category for naming those who do not or cannot keep the rules (Titchkosky, 2020), this means the rules that enable organizations to stay within the parameters of budgets, and (dis)Ability service delivery.

A bureaucratic interest is one that measures and documents lack of function in relation to the possible provision of services, by using ability as a yard stick to determine proper assimilation or the appropriate exclusionary practices (Titchkosky, 2020). To demonstrate the impact of this bureaucratic process, I will use a case study from a report entitled Assistive Devices Program: The Client Journey and Experience. Mary is a 68-year-old woman who obtained a spinal cord injury when she was 30. She was prescribed a rigid brace as she experienced the collapse of her right leg. Mary did not feel that the rigid brace helped her maintain her regular gate for walking and caused her more pain (Converge3, 2018). She was able to find a brace more suitable for her needs that would allow her to walk properly, however, this was not covered by funding. Mary felt frustrated and trapped in an ableist system that put more importance on the monetary value, rather than the quality of life she required (Converge3, 2018). This created conditions of invisibility, as Mary was not able to keep the rules of the funding program. Mary was passed from organization to organization trying to find funding for her more suitable brace, she finally resorted to contacting her Member of Parliament (MPP), this did not result in her receiving her brace. As a result of Mary not being accommodated, she was compelled into using a wheelchair. This caused feelings of invisibility, hyper-visibility and ableism, as grey zones were created in order to ensure that a specific archetype of (dis)Ability was upheld.

Ironically, ableism upholds and glorifies functionality (Campbell, 2019). However, if functionality needs to be achieved by using more advanced technology, then using ranking negation and prioritization create conditions of hyper-visibility, and invisibility. If ableism’s end goal is to assimilate those with non-functional bodies, into functional bodies, then funding must be made available for adaptive devices that will aid in improving the quality of life for perceived non- functional bodies instead of hindering them (Campbell, 2019). This can include areas previously discussed within the Accessibility Act, such as, Transportation, Communication (other than information communication technologies), The Built Environment and Design and Delivery of Programs and Services.

In terms of creating a relational approach to phenomenology, it is imperative to understand that lack of access to transportation for First Nations communities, creates a ripple effect that reproduces stress and separateness. Within society there are certain expectations, when being considered an active member within a community, this is a form of typification and ableism. In phenomenology, typification is a way of classifying and categorizing certain groups and individuals into a system of relevance. By definition this means that if you are a girl, you should like pink and play with dolls, or if you are a teacher, you should be patient and love kids. When requiring individuals to participate fully within society, it is important that they have access to the appropriate tools needed to participate. When these tools, such as transportation are not readily available, this can cause feelings of invisibility, hyper-visibility, and ableism.

The difficulty that First Nations people face, is the lack of transportation within their community. Transportation is identified in these communities as a social determinant of health, as it provides access to healthcare services and social connections (Chappell, 2021). It is extremely important that policy makers and planners consider ways to expand the range and time frames of transportation services in rural and remote First Nations communities (Wilson et al., 2009). They also need to acknowledge and reimburse people who volunteer their time to drive family members, when transportation is not available (Wilson et al., 2009). Ableist assumptions become prevalent when it is not considered how much time it takes to arrange transportation, as accessible and affordable transportation is limited within these communities. For example, in a rural community in Williams Lake, BC accessible and affordable transportation is only available on Mondays between the hours of 7:30am and 3pm through the Health Connections bus. However, this service is not door to door, riders need to book a HandyDART (if available in the area) to take them to the Health Connections bus stop (Mirza & Hulko, 2022). The Health Connections bus departs Williams Lake at 7:30am and arrives in Kamloops at 11:30am. Riders then have 3.5 hours to make their appointments and complete any other errands they need to do and then must be back at the stop by 3pm. The Health Connections bus will then arrive back in Williams Lake at 7pm, where the HandyDART bus (if arranged) will drive them home, making it a 12-hour day of travel and appointments (Mirza & Hulko, 2022).

Having to make arduous transportation arrangements, can lead to feelings of hyper- visibility as you must co-ordinate varies services to fit in all your needed appointments.

Additionally, the need to book HandyDART in advance, could lead to feelings of invisibility. This is especially true when this service is not available in your designated area, as your trip may or may not be fully accessible for your needs. From a phenomenological standpoint, your stock of knowledge is only considered valuable if you are aware of the affordability, scheduling, and location of the services available (Goettlich, 2011). Ableist assumptions come into play when it is assumed that the riders can map out and schedule all the variables needed for this transportation dance to work. Since ableist assumptions may often be built on the ability to achieve, an individual must have reliable resources both individually and collectively (Turri, 2022). However, if the resources are not targeted to a motivational relevance, such as getting someone to the Health Connections bus, the services then become irrelevant, and pointless. This is unless you have people who are willing to assist with the result of reaching your appointment (Goettlich, 2011). When implementing new policies around accessible transportation, it is imperative to consider the usability, functionality, and location of this critical resource for basic emotional, physical, and mental well-being.

The built environment also plays a role in reaching various destinations and may also create feelings of hyper-visibility, invisibility, and ableism. (dis)Ability justice understands that all bodies that unique and essential, and inevitably regardless of ability, needs must be met (Sins Invalid, 2015). Therefore, access must not be only the literal inclusion of (dis)Abled people but work to address all conditions that maintain the status quo (Sins Invalid, 2015). This means making infrastructure accessible for all, mothers with strollers, wheelchair users, elderly people with walkers, etc. This does not mean that access needs will come naturally, there needs to be conversation and consultations with various (dis)Ability groups, as not all (dis)Ability needs are the same. It is also critical to note that repeated consultations should happen at every stage of a new development project or policy, to gain a current understanding of what the needs may be at each stage. Access intimacy is a practice that is maintained and built upon over time, when individuals get your access needs (Mingus, 2011). Although it can be instantaneous and happen with passing strangers it is more likely to occur when there is an established relationship (Mingus, 2011).

We must suspend the natural attitude that we understand what the (dis)Abled community needs and have conversations with them to fully understand their actual needs. Doing this may decrease feelings of invisibility, hyper-visibility, and ableism, as we are giving PWD the opportunity to access their shared stock of knowledge around their life world (Huxley, 2000). This comprises of social, and cultural experiences that hold meaning for each individual based on their lived truth (Huxley, 2000). Centering the planning process on people with (dis)Abilities is imperative as it allows planners and planning experts to work with intentionality, focusing the planning around the most vulnerable communities (Huxley, 2000). Phenomenology works to combine practical based reason to integrate with policy restrictions. However, when multiple disciplines and organizational knowledge is not considered, then individual references take over collective action. It has become the stark reality that infrastructure becomes the soft governance of social life (Healey, 2007). For example, inaccessible infrastructure is not a mere inconvenience, it impacts social participation to life sustaining activities, such as work and being able to pay one’s bills. Although our affordances in life are governed by our ability to pay for them, if we cannot work the privileges and affordances, we receive are minimal. Additionally, affordances become available when our bodies are healthy enough to use objects as they are intended to be used. For example, a set of stairs allows individuals affordances to navigate inside a building however, if one is unable to use the tool provided (the stairs) then they can no longer reach the end goal of navigating inside the building.

One may use individuals as resources to achieve their end goal, or they may use their own physical (bodies) abilities as the resource. The body then becomes the motivational relevance of navigating the building (Goettlich, 2011). If the body cannot be used to navigate the building by climbing the stairs, the resource then become redundant and invisible, especially if there are no alternative options, such as an elevator or ramp. Misfitting (accessible vs inaccessible) can create ableist assumptions that does not consider that the temporal and spatial elements of something are not congruent, such as a ramp covered with snow in the wintertime (Garland-Thompson, 2011).

When things are fitting properly, such as having access to an accessible environment, then the meanings and consequences of interacting within that environment may become more positive. This may then help to reduce hyper-visibility, invisibility, and ableism. By bringing forth the role of architectural barriers and disablement we are highlighting the ableist divide between bodies that are labeled as functional and those that are not (Pascalau-Vrabete et al., 2021). By highlighting this divide and simultaneously engaging the voices of those with (dis)Abilities, a deeper understanding may be gained of the resources rights and information needed to promote opportunities for living full and independent lives (Pascalau-Vrabete et al., 2021).

Living a full and independent life, does not only include having access to the built environment, but also having access to alternative forms of ASL. Individuals who are Deaf may struggle to interact with others as they try to engage relationally (Kee, 2018). They try to form deeper bonds and create social meaning in the context of their worlds both at an individual and collective level. In phenomenology speaking speech is norm based and allows individuals to attend to deeper meanings of already sedimented language (Kee, 2018). For example, when a Deaf individual does not have access to a full conversation, they may interpret what is being discussed in a completely different way. This is especially true if similar words with two meanings are being used, for example weight and wait, or whether and weather. Additionally, without access to incidental learning (over hearing conversations, news reports), it may lead to feelings of invisibility, hyper-visibility, and ableism (Meek, 2020). They need family members to repeat parts of a conversation to understand what the conversation is about; this highlights the differences in normative abilities. For example, a hearing person is considered within the norm of hearing abilities (Meek, 2020). Personal experiences then become situated in an already existing universal experience with its own symbols and meanings, referring to the taken for granted or common-sense world (Thoma & Fuchs, 2018). Language helps to create shared habits and routines as well as shared knowledge, as a basic human need of communication and belonging (Thoma & Fuchs, 2018).

In phenomenology spoken speech is also used to connect to basic language skills, this incorporates the words, without understanding the meanings (Thoma & Fuchs, 2018). For example, when thinking of an infant they hear the words, but do not understand what they mean. When a Deaf individual does not have access to a full conversation, they may hear a word, but not understand in what context that word is being used. Therefore, the conversation can become confusing and can cause feelings of invisibility (not being included), and hyper-visibility (when having someone to repeat the conversation). As a society we must understand that there are many different forms of language including ASL, and by not adopting this form of language, we could be adding to a sense of segregation and isolation (Thoma & Fuchs, 2018). ASL provides Deaf people with the opportunity to feel recognized and simultaneously convey their presence in the world (Anglin-Jaffe, 2011). Being able to convey who a person is through their presence, comes largely from the ability to equate and interact with speech and sound (Anglin-Jaffe, 2011). Therefore, language presents a way of being in the world that holds assumptions about normalcy and societal contributions. We can understand our world better, by appreciating all the different forms of communication and (dis)Ability. A way in which this could be achieved is through programs, services and activities that can include all levels of ability.

Most motion sensing phenomenology (MSP) refers to providing vivid descriptions of moving together with another person (Smith & Lloyd, 2021). For this reason, I have chosen to use this as a phenomenon to connect individuals with (dis)abilities to sports and recreation. Through this phenomenon, PWD resist the effects of hyper-visibility, invisibility, and ableism, by showcasing their abilities to participate in an arena that has in the past been populated by predominantly able- bodied. Additionally, MSP focuses on deeper understanding of feelings and flows as it relates to interactive relationality (Smith & Lloyd, 2021). This means the ability of PWD to anticipate teammates and opponents ’strategic moves, by reading body language in the sporting event being played. Physical literacy (body language) is not only a bodily capacity, but also one that is connected to perception, experience, memory anticipation and decision making (Robinson & Randall, 2017). There is no separation between body and mind and individuals interact with the world in whatever way they can. Sports is one of the many avenues to facilitate communication with others, through a range of senses, experiences, and the ability to engage with the environment in an imaginative way (Robinson & Randall, 2017). For example, when playing wheelchair basketball, physical literacy comes in handy when trying to determine which direction an opponent or teammate may go, or anticipating if they will shoot or pass the ball.

At times athletes with (dis)Abilities feel that their bodies do not work in coordination with how they expect to perform (Abrams, 2015). However, sports are a reminder that (dis)Ability is not a burden and can work to dismantle ableist views by giving PWD opportunities to connect with their body (Richard et al., 2019). Sports helps to redefine their (dis)Abled body through functionality rather than being a hurdle to overcome. The specific type of wheelchair being used then becomes an extension of the body, as the athletes understand the capabilities of the different types of chairs. For example, when playing wheelchair rugby, there are offensive chairs built for speed and mobility, and defensive chairs that contain bumpers designed for hooking and holding other players (Paralympic Athletes Support Working Group, 2022). Therefore, by using their knowledge and intuition about the chair, they can anticipate their teammates or opponents moves. Sports may help to shift previous feelings of hyper-visibility and invisibility, by challenging ableist assumptions that (dis)abled bodies are incapable of athletic performance. It also suspends natural attitudes that may be held by some able-bodied or (dis)Abled persons that they lack the ability to perform at high levels of endurance. In the sporting arena individuals can become visible as athletes, rather than hyper-visible sights of inspiration.

One of the few data sources on (dis)Abled film is the Association of Moving Image Archivists (2020), who found that wheelchair users represented only 7.1% of individuals having (dis)Abilities with a total of 3.1% having a physical (dis)Ability. Therefore, this is an indication that film is an underrepresented avenue to display and promote (dis)Ability awareness. Its widespread abilities to potentially dispel myths of invisibility, hyper-visibility, and ableism within many settings, including the educational arena remain absent from the research. Yet this form of awareness is still used sparingly in the research (McKay et al., 2018). Access to digital media is widely prevalent and can convey stories and narratives of lived experiences that may have its most beneficial impactful when displayed in digital form (McKay et al., 2018).

In summary, the intention of this literature review was to shed light on both the historical and contemporary ways PWD may experience hyper-visibility, invisibility, and ableism. To expand societal knowledge, it is important for readers to understand that my literature review is only one compilation of scholarly work. It may serve as a reminder to all human beings, stakeholders, and policy makers, to engage in focused attention, the emptying of the mind and natural attitude assumptions. By acknowledging the ability of PWD to create and change their futures as they engage in a myriad of ways to participate and contribute meaningfully to society.
Mary hypervisibility Furthermore, when dealing with government-funded agencies, it’s crucial that they maintain compassion and empathy. Unfortunately, these qualities can often be overshadowed by bureaucracy. Personally, I have frequently felt like an inconvenience to such organizations, exemplified by Mary’s experience of being shuffled from one organization to another. Having to repeatedly share her story, increasingly intensely each time, may have led to feelings of hypervisibility. Despite her needs not being met, Mary remains exposed and at the mercy of the agency’s judgment regarding the legitimacy of her situation. This can intensify feelings of hypervisibility.
Although Mary doesn’t delve deeply into her emotions, it’s likely that, as a wheelchair user, she attracts more unwanted attention from society and is more susceptible to stereotypical and discriminatory attitudes. Such visibility can lead to unwanted attention, further contributing to her hypervisibility. It’s important to recognize that while hypervisibility is sometimes necessary for securing funding from government agencies, the outcome is often beyond the control of the wheelchair user. In Mary’s case, her hypervisibility did not result in meeting her needs.

Phenomenology elevates the voices of the marginalized and draws on shared personal meanings of lived experiences related to feelings of invisibility, ableism, and hyper-visibility. Phenomenology also reclaims and gives new meaning to experiences that have been entangled in webs of ableism, bureaucracy, invisibility, and discrimination. The benefits of researching lived experience are further enhanced by using autoethnographic methods, where my 30 years as a wheelchair user with cerebral palsy are eliminated through art, poetry, video, and storytelling.

These practical real-life applications cultivate change, awareness and collaborative allyship. The purpose of exploring hyper-visibility, invisibility and ableism is to enrich societal understanding around wheelchair users’ experiences. This will include but is not limited to the identification of research questions, employed methods, and the limitations of this study.

As a researcher, I engaged with and will continue to engage phenomenological imaginative engagement (Vasalou, 2016). This involves seeing the unique and varied accomplishments of (dis)Abled communities alongside dynamic possibilities for change in the future. My role required me to remain in a reflective stance of disengaging with my own biases and assumptions.

My personal experiences are rooted in my own understanding of hyper-visibility, invisibility, and ableism, as I identify as a woman who is a wheelchair user. Rapport was important for this research as phenomenology is about shared experiences and self- disclosure sparingly (as it wasn’t important that my experiences did not distract from the unique and collective experiences of my participants). All humans, including those with (dis)Abilities have a story to tell and have unique ways of being in the world. My role is the reminder to myself and others that regardless of (dis)Ability, that we can only help each other as far as we individually and collectively have gone.

Within phenomenology and (dis)Ability studies at large, ableism, hyper-visibility and invisibility affect the way that persons with (dis)Abilities (PWD) are perceived within society. These barriers could include, but are not limited to accessibility, attitudinal barriers and systemic barriers that promote the exclusion of those that are not able-bodied. Predominantly in (dis)Ability culture, the natural attitude of some able-bodied individuals may focus on overcoming (dis)Ability, instead of helping to create inclusive spaces that recognize and celebrate differences as a source of pride rather than shame. My research will explore the following question through a phenomenological lens.

1. How do hyper-visibility and invisibility affect the daily lives of wheelchair users? What role does ableism play within the phenomenon?

Phenomenology is a philosophical framework surrounding structures of human consciousness and experiences (Gaudiano, 2023). It was founded by Edmund Husserl in the early 20^th century and was expanded upon by various like-minded philosophers in Germany (Moran, 2008). Husserl details the exchange of a handshake and explains the intuitive nature of the human mind to predetermine the pressure to be used for the handshake (Moran, 2008). Humans can do this as we can anticipate the sequence of the interaction based on societal etiquette. In some cases, the inability to engage appropriate etiquette could be seen as disrespectful, an example of this is not being able to shake a potential employer’s hand at an interview. I have chosen to use phenomenology as it is a first-person perspective related to judgements, perceptions, and emotions. It is concerned with the life world and how humans are connected directly to their surroundings (Munger, 2011).

Phenomenology is not just about individual perception; it can incorporate lived experiences from a collection of group involvement and participation in a like-minded community (Stein, 2006). However, there is recognition that communities are not formed by a set of predetermined principles. When a community member decides to give oneself over to the group’s vision, it is normally done with a mutual awareness and understanding of the group’s mission statement (Stein, 2006). Even though you may be a part of the community and agree with the mission statement, you still maintain your own individual experiences that you may wish to share with the group (Sokolowski, 2000). That shows a form of bracketing, meaning you can put aside your assumptions that you may hold about another person’s experiences and realize that they have their own unique perspectives (Brainard, 2002).

Phenomenology is an invitation for phenomenologists to examine a community-oriented approach to worldly situations or interpersonal interactions (Stanier, 2022). In the context of my research, this means the ability to recognize that individuals are not deliberately passive or active when it comes to their decision making or interactions. An individual waiting for a wheelchair can make all the inquiries needed and fill out all the applications required, but they are at the mercy of the providers to supply that chair. This shows the ability of the wheelchair user to achieve the end results of obtaining a chair. However, there may be feelings of lack of control or choice in how and when they participate in daily activities, due to their inability to be mobile while waiting for the chair to arrive, which could cause feelings of invisibility.

In the context of my research on wheelchair users, hyper-visibility, invisibility, and ableist behaviour directly impact the intended purpose of accessibility. For example, an elevator in a shopping mall is primarily intended for PWD and strollers. However, some able-bodied individuals will use these elevators instead of walking up a flight or finding an available escalator. This can cause long wait times and feelings of invisibility. In my personal experience, wheelchair accessible washrooms hold similar issues to elevators, as some able- bodied people often use them as change rooms, as well as a regular washroom. This has caused myself and my caregivers’ great inconvenience as we must wait, even if there are other stalls available, because they are too small for my wheelchair and my assistant. At face value, it may seem reasonable for an able-bodied individual to use a vacant accessible washroom, however, some may not be considering that I cannot use a regular washroom stall. This can cause feelings of hyper- visibility, invisibility, and ableism, as some able-bodied individuals are making assumptions based on their own physical needs.

It is the assumption that PWD may be unable to speak, hear or comprehend for themselves; And if they are to do so, it will not be a coherent form of communication. For example, while out in public, the abled bodied will stare, look past you and only communicate with the caregiver, causing the (dis)Abled individual to feel invisible. This ableist interaction results from ideas of normativity, this is defined as the phenomenon of designating some actions or outcomes as good, desirable, or permissible. This may cause some able-bodied individuals to feel they are behaving in the correct way (Finlay, 2019).

I identify as a wheelchair user, with my own abilities and limitations. I require assistance for activities of daily living, such as getting up and dressed. I identify less with wheelchair users that have a spinal cord injury, who can transfer on their own and do unassisted activities of daily life. This might include things like driving a modified car. I do identify with the overarching need for dignity, independence, and respect, I believe these needs should be afforded to all human beings, including wheelchair users. However, differences can arise when the individual who cannot drive has to make scheduled arrangements to accomplish the same tasks as the wheelchair user that can drive. An individual who cannot drive still strives for independence but must work harder to achieve it due to the societal barriers they encounter. This includes things such as transportation limitations, inaccessible infrastructure, scheduling conflicts and availability of personal support. Ableist assumptions could be drawn which result in wheelchair users being viewed as unproductive and incapable of contributing to society. This is based on barriers encountered when trying to access the resources needed to fully engage in society (employment, socializing, healthcare etc.). I believe there needs to be more understanding and empathy around the invisible barriers of (dis)Ability.

Edith Stein speaks to the concept of performances to exercise empathy (Stein et al., 1964). Like acrobats who perform on a tightrope, wheelchair users are constantly analyzing their daily routines and habits to negotiate and navigate through personal encounters (Hochschild, 2012).

Many times, empathy is cultivated from the ability to understand our past, present, and future selves in a certain situation (Stein et al., 1964). However, if fear or anxiety clouds the empathetic response it is difficult to display this emotion. Therefore, this may result in ableist behavior that can cause feelings of hyper-visibility and invisibility (Stein et al., 1964). When organizations put the needs of wheelchair users at the forefront of service delivery, empathy is generally more successfully cultivated (Barnes, 2011). Further, it is important to recognize the complex psychosocial experiences faced by wheelchair users and the accumulative impact of dealing with multiple barriers (James & Hockey, 2007). When we understand the ways in which resource allocation affects individuals and how they organize their lives both individually and collectively, conspicuous compassion is less likely (Moeschen, 2016). Bureaucracy, organizational politics, and resource allocation can all impact natural attitudes and degree of empathy of service providers to wheelchair users. We must recognize the diversity of otherness. In the next section, I will discuss more of the natural attitude and how it impacts wheelchair users.

According to Stein et al. (1964), if a resource is being provided, a need is being met. For example, when two recipients require a subsidized wheelchair, we first evaluate how they meet the eligibility criteria. Eligible recipients must not have received a chair within the last five years, for the chair to be fully subsidized. They must qualify for the Ontario Disability Support Program (ODSP) and/or the Assistive Device Program (ADP). The natural attitude comes into play when bureaucracy dictates that recipient’s mobility needs remain static and will not change  within a five-year timeframe (van Manen, 2016). This does not consider the possibility that the recipients (dis)Ability needs may progress at different rates, depending on their diagnosed (dis)Ability. For example, if a recipient requires a manual chair and their (dis)Ability progresses to requiring an electric within two years, they will not be eligible to receive the upgraded chair for another three years. This can and will affect meaningful participation in daily activities such as work, getting to appointments and social events. From my personal experience, wheelchairs are an essential form of mobility that helps PWD interact with their environment. If they do not have access to proper mobility, then their quality of life becomes affected. In return this could perpetuate ableist assumptions that wheelchair uses are helpless and unproductive. This can cause the wheelchair user to feel exposed and in the spotlight (hyper- visible).

Invisibility and hyper-visibility are sometimes linked to vulnerability may be based on situations where vulnerability may occur. At times wheelchair users do not choose to be vulnerable, but they are put in positions of vulnerability. This is a direct correlation to the previous mentioned example of how the wheelchair providers can affect the independence of the wheelchair user. Drawing on a personal experience, the batteries in my power chair were not holding a charge for more than 20 min. This hindered my ability to go out, to move around the house and basically do anything without my chair battery dying. I contacted the power chair company July 20^th and did not receive my batteries until August 31st. This put me in a vulnerable position, I do not choose to be vulnerable however, to receive the batteries more quickly, I must make myself look vulnerable in the eyes of the provider. I am forced to be strategic in order to receive the support and services I require to maintain all aspects of daily living. Even though I choose not to be vulnerable. I must portray myself as vulnerable in order to receive the services I so desperately need (i.e., batteries for my electric wheelchair). Even meeting up with a friend requires strategic planning. In one instance, I had to inform the transportation company that I needed to go to the bank (which is viewed as a legitimate request for accessible transportation) that just happened to be right beside where I was meeting my friend. The needs for socialization and friendship are not considered a ‘legitimate’ request to access accessible transportation. Even though my actions at times may be strategic, this does not mean that they are any less authentic.

Phenomenology also draws on physical function by drawing attention to how the body moves and operates without thinking (Leder, 1990). For example, when an able-bodied person is riding a bike there is no thought, just instinct, once you know what to do. When the body functions seamlessly and harmoniously, movement is done without thought. However, if a person’s movements are impaired, then the thought process becomes more deliberate (Leder, 1990). This task becomes more conscious as it is being undertaken. For example, a person with no impairments just walks up the stairs with no effort or thought. However, when a person with an impairment must climb the same stairs, each step is calculated as they are mindful of distance, spacing, height, amount, length of time it will take to reach their destination and on occasion, the pain caused. This example highlights the distinction between the body as functional (Eu- appearance) or non-functional (Dys-appearance).

These words are of Greek origin (Merleau- Ponty, 2002). Often the lines of functionality can become blurred. For example, an individual who has had a knee replacement may not be able to perform the same tasks as someone who has not had the procedure. This may not be the case for a wheelchair user, as some (dis)Abilities may be permanent. This may impact ableist beliefs as people become more resentful or complacent towards wheelchair user as they may require continued rather than

temporary support. In turn this may impact the responsibilities of the able-bodied person. For example, at one of my former employers my power wheelchair broke down and I had to use a manual one for a couple of days while mine was being repaired. My employer would not allow my workplace assistant to push my manual chair as it was not in her job description. Eventually, after much discussion and explanation that my chair is part of me, they finally allowed it. This situation reinforced ableist assumptions as to my ability to perform my job affectively, as without my assistant pushing me to the locations where I needed to be, I would be unable to perform my work-related responsibilities. The manager of my department was visually impaired and had an assistant that took him everywhere, which leaves me questioning what was so different about my request. Certain (dis)Abilities may be perceived as less rigorous or demanding, but when you require assistance in all daily living tasks such as using the bathroom, eating, opening doors and scribing, the level of vulnerability is heightened.

Stein notes the state functions to get things done with a focus on standard interventions (Stein et al., 1964). When impairment or (dis)Ability support is viewed this way, (dis)Ability work can be seen as more rigorous. We are failing to see the unique perspectives and opportunities available within and among (dis)Abled communities, regardless of the level of support needed. As much as the (dis)Abled community needs physical support, it is important to understand how action or inaction affects those in vulnerable positions. There are also the complex interactions between (dis)Abled persons and their environment that can perpetuate ableist feelings towards support systems, organizations, and with individuals who may or may not be (dis)Abled (Stein et al., 1964).

When a wheelchair user is traveling with an able-bodied friend, their goal is to visit and enjoy the same sites and experiences. However, when they are presented with an obstacle (steep hill, stairs, rough terrain etc.) in achieving their goal, they will work together to overcome this obstacle. This is called habitual unification, as both individuals now share the same goal and objective (Wilde, 2021). Another term used is humans who also. This describes humans who share similar thoughts and feelings, such as, about nature, movies, travel, and lived experiences for example (Wilde, 2021).

The reason I am introducing these terms is based on the main idea in phenomenology of being in the world. When (dis)Abled people feel that they can experience one another, they feel a sense of belonging and alliance to individuals that create a connection. This allows them to feel seen and heard, creating a relational home (Finlay, 2019). Walther refers to this as the inner bond or feeling of togetherness (Osler, 2022), as the shared feelings can transition from an individual to a specific group of people. For example, I am currently part of a (dis)Abled women’s group that is working on a paper about (dis)Abled women in the workplace and educational arenas. When I think about my experiences with the employment and educational sectors, I can sometimes feel drained and discouraged. However, when we all meet to discuss our shared experiences, I feel better and energized by their supportive nature and ideas for change. Even though our goals may be different, we are all human and we share a common bond and a we experience (Zahavi, 2016) of marginalization, (dis)Ability and striving for change. Due to preconceived ideologies society may have about function and ability, it may influence how we perceive each other in the world around us. This includes, but is not limited to, ableism. I will discuss this in the next section.

In this section, I will draw from personal experiences and refer to literature that demonstrates many aspects of being in the world, which is an over-arching phenomenological concept. This concept, along with phenomenological terminology such as the natural attitude means the natural unconscious belief structure that most people live by (van Manen, 2016). At times this can be influenced by what we see, hear, or learn, either by others or by social media. This contrasts with the ‘phenomenological attitude’ which is the hope that individuals will not look at (dis)Ability as incompetent, but rather as capable and deserving (van Manen, 2016).

The study follows young people who are wheelchair users with cerebral palsy and explores how the young people relate to their bodies and the space around them, in relation to the expectations society places on them because of their (dis)Ability (Boyle et al., 2023). Many of the expectations were born out of stereotypical and ableist assumptions. One of the participants recounted a story where he was told by a staff member at an employment center, that because he was (dis)Abled and on ODSP, according to a participant in Boyle’s study, he was written off for life (Boyle et al., 2023). The staff member implied that there is no expectation on him to find appropriate and meaningful employment. Even though this comment was stated by one individual, it left the participant feeling hopeless and mistrustful of the entire agency.

Assumptions play a huge part on both sides, the service provider may have mistrust, disrespect, or misinformed opinions about the (dis)Abled client, and the client may have the same feelings about the agency. This is due to past experiences of being ignored, passed over or not being taken seriously. From my personal experience, I can recall a similar situation where an employment agency employee told me that the only job, I would be able to get was at McDonalds. At the time, I was working on my second degree. I understand that there are many students that work at McDonalds, Tim Hortons or wherever else to make money for school.

However, in this situation, she was insisting that this would be the only job I would be qualified for. Based on my physical limitations, the assumption that I would be physically able to complete tasks at a fast-food restaurant was ridiculous. This is a prime example of how ableist beliefs can affect the corporeality of PWD (van Manen, 2016). Corporeality means the way in which you view your body in relation to others and it can highly impact the lives of PWD (van Manen, 2016). This can leave (dis)Abled individuals feeling ignored, hopeless and frustrated. To put this in perspective from an able-bodied point of view, if you walk into an employment agency dressed in dirty clothes (maybe because you got a flat tire and had to change it), you will be judged based on how you look, not on who you are and what you are capable of even before a conversation begins. This holds true for wheelchair users, as you may be judged only based on how you look, not on your capabilities as on individual.

Another example of how ableism can affect wheelchair users’ relationality to the world (how one relates to others) would be, when I was employed through abc company, as a (dis)Ability Awareness Coordinator, the funding was not renewed for my scribe. The reason I was given, was that the company was no longer able to afford to pay double wages for one position. This was after I had been employed by them for two years and was given constant assurances that the funding would be renewed. This left me feeling that the work I had achieved during my two years of employment was not appreciated or respected. This is a good example of how the phenomenological attitude would have aided the employer in understanding that even though I required an assistant, the work I was achieving was above the specified expectations.

Unfortunately, their natural assumptions took over and their (dis)Ability awareness was not something they intended to look at. They believed that hiring one individual to do my job would be more beneficial and cost effective.

An illustration of how ableist beliefs can affect PWDs, is an experience I had as a co-op student in a Special Education class for students in grades 9-12. The students had varying levels of (dis)Ability; however, they were all deemed to be at the same ability level.

This was very upsetting to me, as there was several of them that were very capable of learning math skills, money management, writing skills, telling time, reading and any other basic life skills. However, this was not what they were being taught, there were no expectations or encouragement to help them achieve their highest level of potential. All they were asked to do was colouring, cutting, and pasting shapes. I decided to do an exercise with the class on creating their own self-portraits. It was important for me as a co-op student to understand how they saw themselves through art interpretation. The outcome of this exercise was extremely enlightening and spoke volumes about how much these students felt unheard, invisible, excluded, and lonely. For example, there was one young woman that drew herself with barbed wire across her mouth with a lot of red, this represented her voice being silenced and the feelings of anger that were evoked when she felt unheard. Another young man in the class drew himself sitting at a lunch table by himself staring at the people around him. This represented loneliness and isolation.

When asked what colour he would use to represent this feeling, he said black and when asked what shape he would give it, he said a hole. These two combined give you a black hole.

The reason I wanted to use the examples above is because within phenomenology this is a technique called the draw-talk process (Boden et al., 2019). This is a process in which feelings and communication can be achieved through drawing. There are three stages within this technique, which include 1. Representing yourself through words, symbols, or images; 2.

Drawing, talking, or writing words that represent your relationship with others; and 3. A facilitator was standing in to help them interpret the meaning of their drawings and determine what their ideal present and future could look like (Boden et al., 2019).

It was important to me to discuss with the students what they wanted to see change. For example, the young lady that drew barbed wire over her mouth, told me that she wished people would listen to her more and respect what she had to say. This is something that she needed, not only from her teachers, but from parents, friends, family members and service providers. The young man who drew a black hole wanted to feel more integrated with the able-bodied students and not feel so isolated and centered out. In the high school he attended, the special education students were made to sit at a separate table in the cafeteria at lunch and they were also given a different lunch schedule than everyone else. I do not know why this was put in place, but I feel it wasn’t in the best interest of the students. I feel that it is equally important to mention, that students who are non-verbal have similar desires to express how their lived experiences affect them. So, I used the Kurzweil 3000 app which allowed the non-verbal students to point at words, colours, pictures and/or small sentences, which represented emotions/feelings and situations. The students were very responsive to this exercise and where able to share what made them happy, sad, and angry. I remember one young man who required assistance to eat. He told me through this app that he didn’t like it when he was fed quickly, when his food was mixed and he did not like it if, when he was finished, nobody helped him clean his face.

In summary, the draw-talk process further deepens our understanding of relationality and lived space (Boyle et al., 2023). This means we can get an introspective look into the perceptions of others and how these perceptions influence self-identity and feelings about bodily differences. We can then work towards relationships built on understanding, community, and improving the security of spaces we cohabitate in (Boyle et al., 2023).

The natural attitude within phenomenology would dictate that some individuals would automatically assume that if you are non-verbal or in a special education class you are not capable of self-expression (van Manen, 2016). However, the exercise I asked the students to participate in proves that not all (dis)Abled individuals are incapable of being in the world. They are also not incapable of knowing how they want to exist in the world and how they wish to be treated within the world. Within the (dis)Abled community some individuals are always trying to fit in with society. This fitting in is also applied to their life narrative and connects moments in space and time into a life story. Unfortunately, the life stories that are present for PWD are often centered around their physical (dis)Ability. These stories become a result of the interactions between people with impairments, attitudinal barriers, and their environment (Bynum, 1999). At times, some wheelchair users may not have the opportunity to voice how they want to be seen in the world. They may feel invisible or receive unwanted attention, the next section will describe these phenomena in greater detail.

Hyper-visibility is defined as the state of being extremely visible, this may create negative stereotypes that mark differences as deviant (Ryland, 2013). Invisibility is defined as an individual not being fully valued or recognized, they are denied power and voice (Brighenti, 2007; Simpson & Lewis, 2005). Both hyper-visibility and invisibility are perpetuated by social structures within some dominant groups, such as certain able-bodied individuals and some government organizations and policies. For example, accessibility, transportation, workplace assistance and adaptability (Lewis & Simpson, 2010; Simpson & Lewis, 2005).

There are six conditions that create hyper-visibility and invisibility: 1. Power Dynamics, this is where some able-bodied individuals feel that they are more capable of fulfilling all tasks put to them (Buchanan & Settles, 2019); 2. Asymmetry, this creates conditions of strategics inequality (Buchanan & Settles, 2019); 3. Status, this depends on your social status of being marginalized or privileged (Lewis & Simpson, 2010); 4. Social Hierarchies and Boundaries, this is where privileged groups assert and maintain their social position, while continuing to devalue the marginalized groups; 5. Distortions, is the tainted perceptions of marginalized groups (Brighenti, 2007); and 6. Socially Constructed, is something that is not biological, but rather is socially constructed according to the narrative attached to marginalized groups (Smedley & Smedley, 2005).

For example, when a wheelchair user does superior work, some able-bodied individuals assume they must have had help. From my personal experience, I was employed as the Disabilities Awareness Co-Ordinator. After two years of employment, I was told that my position was being re-worked due to lack of funding. This was very confusing to me, as I was praised for having the most original and creative ideas of anyone holding this position. I was contacted one month after I had left the position, by my former supervisor and asked if I would be willing to mentor my replacement at no compensation to myself. This left me with a feeling that my contributions while employed were used to their advantage. When I was contacted later, they were basically doing the same thing. This is a way of devaluing my contributions, thus creating distortions around my unique capabilities. They strategically used their power to better their organization, while keeping me in a marginalized position.

To this point, I have described some of the difficulties with employing lived experience when examining the lives of PWD. However, I do believe that phenomenology does draw on lived experienced successfully. In the next section, I will draw on the potential of lived experiences within a phenomenological approach. (dis)Ability provides fresh ways of thinking about the complexity of embodied identity (Garland-Thomson, 1995). When (dis)Ability is appreciated and accepted as a legitimate way of moving about in the world, life experiences then promote (dis)Ability awareness and opportunities rather than being seen as an inability (Garland-Thomson, 1995). One of the ways this shift can occur is by moving personal responsibility for impairment towards a collective one. Additionally, when society acknowledges the infallibility of the entire human race, steps can be taken towards learning about and cultivating opportunities for optimal potential within the (dis)Abled community.

Incorporating lived experience validates that (dis)Ability is part of the spectrum of human variation and life course (Garland-Thomson, 1995). Seeing (dis)Ability as part of the human variation aids PWD in resisting ableism. In my experience, being (dis)Abled is not an occupation that you learn, nor is it something you train for and learn about. Today, (dis)Ability is a way of being in the world. The human body must justify its existence. This holds many expectations around what is and what is not possible (Garland-Thomson, 2012). It is essential to acknowledge that PWD live their daily lives within the constraints of physical and material norms (Garland- Thomson, 2012). When drawing on how phenomenology uses the lived experiences of PWD, I believe its inherent strength is how collective struggles of oppression weave so differently through the lives of the (dis)Abled person. Therefore, the message must stay consistent around remaining in solidarity to be seen and heard.

I will be studying the impact of ableism and how it influences hyper-visibility/invisibility for wheelchair users. For example, hyper-visibility refers to being on display. This is where staring, disgust and stereotypes begin, whereas invisibility is just that, you are invisible, ignored and not important enough to be noticed (Mortenson et al., 2021). I could share many instances of my experience with hyper-visibility and invisibility. Such as going to a restaurant with a friend and my dad having to struggle to get my chair into the door as there was a step and the door was too narrow for my chair to go through, which lead to everyone in the restaurant looking over at me. My invisibility story is as simple as going for a walk and people ignoring me as if I’m not there instead of saying a simple hello. Many times, wheelchair users find themselves caught in the crossfire of experiencing a mismatch between self-identity, societal treatment and the physically built environment (Anderson, 2006). Ableism can become so ingrained it is often difficult to move away from the medicalizing gaze that systematically devalues the knowledge of (dis)Abled persons (Anderson, 2006). The interplay between (dis)Ability, cultural perceptions and lived experience leaves PWD caught in a cycle of relational repair (Anderson, 2006). For PWD, there is incongruence between self and societal perceptions due to the treatment they must endure. The able-bodied must engage in the complex and often uncomfortable learning process of redefining their relationships with wheelchair users. By constantly reflecting and engaging with wheelchair users, the able-bodied can strengthen their critical skill of viewing relationships with wheelchair users from a framework of mutuality rather than dependence.

I have chosen to do interviews because in order to explore the phenomenological term the life world, described as the taken for granted world, the normal world. I will need to understand and contextualize each individual’s life experiences (Schutz & Luckmann, 1973). In the context of

wheelchair users, I will be exploring their everyday normal experiences as well as immersing myself in their life world. The life world provides a backdrop for personal life experiences. (I will be using a combination of structural and descriptive questioning, as it is most commonly used within the phenomenological framework (Bevan, 2014). For example, can you please describe what awkward interactions you have experienced with some able-bodied individuals? It would be inappropriate for me to assume how others will respond to this question however, if I were to answer, it would be to say when they speak to me in a patronizing tone. The descriptive question that I would follow up with would be, can you please explain to me what you mean by patronizing?

The reason for using the structural and descriptive questioning model, is to allow me to not only ask a specific question, but to then dive deeper into the response and obtain further contextual information on how wheelchair use impacts individual’s daily interactions (Bevan, 2014). This will add depth and breadth to the lived experiences being shared. When you are interviewing individuals, you are trying to access real life situations, emotions, and reactions that your participant has experienced. This type of interaction allows for real-life accounts, so that stories begin to build a picture of how wheelchair users experience ableism within society.

Autoethnography is used to study and analyze the personal experiences of the researcher and recognizes that the researcher is both an observer and a participant in the phenomena under investigation (Bochner, 2017). This method pairs particularly well with phenomenology because a relational interaction occurs between the storyteller (the participant) and the story listener (the researcher) (Bochner, 2017). The amount of in-depth reflection required by both autoethnography, and phenomenology gives these methods their power. Reflection is the heart of autoethnographic storytelling and revolves around decisions being made, feeling being clarified, and actions being understood (Bochner, 2017). Stories can never be stable truths and therefore, are ever changing as we go through our life worlds in relation to others and our environment (Bochner, 2017). Autoethnography understands and appreciates the views of everyone involved and it is critical to understand that it is not important what we get out of a story, but how we get into it (Greenspan, 1998). This means focusing on how the story is shaped, how the story has made both the teller and the listener feel and how those influence actions, reactions, and outcomes.

Thus far, I have used my own personal examples which are autoethnographic in nature. This helps to bring new meaning to what it is like for me to live in the world as a wheelchair user and how it pertains to my research. In the next section I will discuss how and why my participants were selected.

In a community, everyone has their own experiences, but they also share some experiences as a group. Even though people agree with the group’s goals, they still have their own unique views. Phenomenology involves setting aside our own assumptions to better understand others’ perspectives. It’s about looking at how people interact with the world and with each other, especially in communities.

In my study on wheelchair users, phenomenology helps to understand how these individuals are viewed by society. For instance, when people use facilities meant for wheelchair users, like accessible bathrooms or elevators, it can make wheelchair users feel ignored or too visible. Also, people often make incorrect assumptions about the abilities of wheelchair users, which leads to feeling invisible. My own experiences as a wheelchair user shape how I view these situations.

Different wheelchair users have different experiences and abilities. For example, I have more in common with wheelchair users who need more help than those who can drive modified cars. We all seek dignity and respect, but our experiences can vary greatly, especially when facing societal barriers like transportation or accessibility issues.

Edith Stein, a philosopher, talked about the importance of empathy and understanding each other’s experiences. For wheelchair users, it’s like constantly balancing on a tightrope, always having to think about how to navigate the world. It’s important for organizations to understand and empathize with wheelchair users to improve their services.

Wheelchair users often face challenges in daily life due to accessibility issues. For example, I’ve had difficulties with my wheelchair that affected my ability to move around, making me feel vulnerable. There’s also a need for strategic planning in everyday activities, like using transportation services.

Phenomenology also looks at how the body functions. When movements are impaired, tasks that others do without thinking, like climbing stairs, become more challenging and deliberate for someone with a disAbility. This highlights the difference between functioning and non-functioning bodies.

Finally, phenomenology is about how people, disabled or not, connect with others and feel a sense of belonging. When disabled people feel understood and part of a community, it creates a positive connection. This is important in overcoming societal biases and promoting inclusion.

Phenomenology looks at how people experience and interpret the world. For people with disabilities (PWD), this often involves dealing with assumptions and stereotypes. For instance, a service provider might unfairly assume that a person with a disAbility can’t work effectively, which can leave the person feeling disrespected and hopeless. This is a part of what’s called ‘corporeality’ – understanding our bodies in relation to others, which is a big deal for PWD.

There are many situations where people with disabilities face misjudgments. For example, I was once told by an employment agency that I wouldn’t be able to work anywhere other than a fast-food restaurant, despite my qualifications. This is an example of ableism – where people are judged and limited by their physical abilities.

How wheelchair users relate to the world and to others can be affected by these kinds of assumptions. In one of my jobs, my work was undervalued because I needed a scribe due to my disAbility. This showed a lack of understanding from my employer about my capabilities.

Phenomenology can use creative methods to understand experiences. For example, I used a ‘draw-talk’ process with students in a Special Education class. They expressed their feelings through art, showing feelings of being unheard or isolated. This process helped to understand their relationality – how they see themselves in relation to others.

In phenomenology, hyper-visibility means being too noticeable in a way that leads to negative stereotypes. Invisibility means not being recognized or valued. People with disabilities often experience both. These issues are influenced by power dynamics, social status, and social constructions. For instance, if a person with a disAbility does great work, others might wrongly assume they had help. This undervalues their abilities and contributions.

Phenomenology helps us understand the unique perspectives and experiences of people with disabilities. It highlights the importance of seeing beyond physical abilities and recognizing the individual capabilities and contributions of each person.

Phenomenology appreciates the unique experiences of people with disabilities (PWD). It recognizes that disAbility is a natural part of human diversity. By focusing on lived experiences, phenomenology helps in understanding and accepting disabilities. It shifts the focus from personal responsibility for disAbility to a shared societal responsibility, promoting awareness and opportunities for PWD.

Ableism, or discrimination against disabled people, greatly influences how they’re seen in society. For wheelchair users, this can lead to being overly noticeable (hyper-visibility) or completely ignored (invisibility). I plan to explore these experiences through my research. For example, I’ve faced situations where I was the center of unwanted attention or completely overlooked, highlighting the mismatch between self-identity and societal treatment.

To understand the everyday experiences of wheelchair users, I will conduct interviews. These interviews will use both structural and descriptive questions, allowing me to delve deeper into the participants’ experiences and understand how they navigate daily life with a wheelchair.

Autoethnography is a method where researchers use their own experiences as part of the study. It pairs well with phenomenology because it involves deep reflection and storytelling, offering insights into how people relate to their environment and others. My own experiences as a wheelchair user will help illustrate these points in my research.

Participants were full-time wheelchair users for at least two years and were 18 years of age or older. They were also able to communicate their thoughts in English and live within the Eastern Standard and Atlantic Time zones, this was due to my assistant’s availability. If they met this criterion, they were eligible to participate in my study focusing on invisibility (unseen) and hyper-visibility (draws attention) and how it may have impacted them (ableism), the (dis)Abled body and society’s expectations.

A detailed informed consent form was sent via email to the participants, outlining (but not limited to) what the research is about, their voluntary participation in the study, and the fact that they could decline in answering any questions and were free to withdraw from the research before data analysis began. Also included was the nature and length of their involvement, potential benefits, risks, or discomfort arising from participating, how information will be used and stored, and confidentiality and choice of anonymity. No compensation is provided to participants for their involvement in the study. I encouraged participants to ask any questions about the informed consent form via email or phone. Participants either emailed the signed, scanned informed consent form to my university email address or verbally consented during the recorded interview.

All interviews took place over Zoom Video Conferencing, selected for its accessible features. Interviews were via audio and/or video/audio recorded using a high-quality microphone to assist in information accuracy. I conducted all interviews in a private setting with a ‘Do Not Disturb’ sign on the door. My academic assistant signed a consent form so that she could provide me with assistance. Once the interview started, I locked the meeting to ensure that there was no Zoom-bombing unwanted interruptions.

Participants were located in a comfortable spot of their choosing, be it their homes, workplaces, or coffee shops. I conducted all meetings from my home. My accessibility plan included accommodating day and time restrictions as much as possible given my own needs. During the interview process, I reminded participants that all information is confidential and is being stored on my password protected laptop. I also informed them that at any time, if they wish certain information not to be used, they had the option of removing it.

Can you check your REB because these two are different consent forms?

I used purposive sampling, which means selecting participants who specifically fit the criteria of my research, such as experiences with hyper-visibility or invisibility and thoughts on ableism. A smaller group of 7 participants was chosen to allow for a deeper understanding of each individual’s experience.

As a wheelchair user and student with cerebral palsy, my own experiences drive my passion for this research. My aim is to create a space where the voices and stories of disabled individuals are heard and valued.

My research in phenomenology focuses on lived experiences of people with disabilities (PWD), specifically wheelchair users. This approach values disAbility as a legitimate way of life, promoting awareness and opportunity. In phenomenology, disAbility is seen as part of human diversity, helping resist ableism—the discrimination against disabled people.

I’m studying the impact of ableism on hyper-visibility (being too noticeable) and invisibility (being ignored) among wheelchair users. Hyper-visibility might involve being stared at, while invisibility can be as simple as being ignored during a walk. These experiences often lead to a mismatch between self-identity and societal treatment.

To explore the ‘life world’ of wheelchair users—their everyday experiences—I will conduct interviews using both structural and descriptive questions. This method allows for an in-depth understanding of how wheelchair use impacts daily life and interactions.

Autoethnography, where researchers use personal experiences as part of the study, complements phenomenology. It involves deep reflection and understanding how stories shape us and our actions. My own experiences as a wheelchair user bring unique insights to this research.

Participants are full-time wheelchair users over 18 years old, fluent in English, and living within certain time zones. They were recruited through Para-Sport Ontario and Facebook. My research aims to create a space for disabled voices to be heard and valued.

I used purposive sampling to choose participants who have experienced hyper-visibility, invisibility, and ableism. A small sample of 7 participants allows for a detailed exploration of their experiences. Interviews were conducted via Zoom, focusing on participants’ experiences and perceptions.

Phenomenological practice is ethical in nature, so I intertwined my data analysis through an ethical and relational approach (Fisher & Tronto, 1990). This means that when I analyzed the data, I took an ethical approach by adjusting my way of relating to participants’ stories. I did this by showing care and focused attention. It is important to note the difference between caring for and caring with. Caring for is defined as needing assistance; however, caring with means that you identify with participants goals and aspirations (Tronto, 2018). Care ethics is foundational to the practice of phenomenology and could be defined as everything we do to maintain and repair our world, so that we may live in it as well as possible (Tronto, 2018). This includes our bodies, our environment and ourselves. Caring becomes the premise of ethical human experience that is centered on inter-dependence. All individuals are care providers and care receivers (Tronto, 2018). In this way we suspend the natural attitude that wheelchair users are helpless and dependent and instead look at wheelchair users as valuable, insightful, and inter- dependent.

The world of human experience is complex, the goal of phenomenology is for us to use our intuition to understand these complexities (Dahlberg, 2006). There is no need to hypothesize or look for the right answers, as every lived experience is valid. Through phenomenology it allows researchers to shed their own insecurities about what the right answer might be and helps use to create a well-traveled road map that we create ourselves with the participants (Zambrano, 2010). The essence of phenomenology focuses on our ability to see the real world through individual and shared experiences, without judgement (Zambrano, 2010). Phenomenology engages in creative insight in which any given problem is seen in a new and unexpected way, but never solved as lived experiences are ongoing and forever changing (Cosmelli & Preiss, 2014). However, engaging in creative insight helps us to accept individual truths and can lead to moments of clarity and understanding. Within phenomenological practice, it is important as a researcher to have faith in the phenomena and the power of intuition for not only us, but also within each participant (Hyde & Rouse, 2022). The phenomenological term believing in the otherness of the other, means acknowledging the unique perspective of the participants (van Manen, 2020).

Stories are not neutral. They are not simply individual constructions; I paid attention to the lived experiences that are often messy, nuanced, and full of gaps. (Brown, 2016; Esposito & Perez, 2014; Horton, 2007; McWade, 2016; Morrow & Weisser, 2012; Sakellarion & Rotarou, 2017; Weisser et al. 2011) Stories bring us into a relationship with ourselves and others, bringing personal struggles into the collective realm (Campbell, 1970). Subsequently, I chose to use phenomenology because life storytelling can provide symbols and motifs and can speak to us on a fundamentally human level (Campbell, 1970). They can connect us to the deepest parts of ourselves and others and bring about a sense of respect, humility, and gratitude for human experience (Mortari, 2008). Stories engage us and using phenomenological tools such as open attention helped me to release any kind of attachment to a hypothesis and allowed me to perceive something with intrinsic value in a relaxed disposition (Mortari, 2008). By applying a relaxed disposition, I allowed the participants stories to flow without interruption or a non-goal attitude.

My interview questions were qualitative in nature, looking at the lived experiences of wheelchair users and how they relate to others in the world around them. It was important for me to look beyond the impairment and see the daily challenges that the participants faced within society.

Looking beyond impairments helped me to suspend my assumptions that I took for granted about how individuals experienced ableism. Conscious decisions were made around understanding that the natural attitude I take on with this research should be informed by the participants’ life experiences and not wholly influenced by my interpretations of my own biases (van Manen, 2016). This is known as welcoming the other. You welcome the other by emptying your mind and creating a sense of placelessness. This means you are rooted in the absence of a place; however, you are doing so to achieve a deeper new understanding of knowing (Mortari, 2008).

One of the phenomenological approaches to analyzing data is about reconstructing the participants’ lived experiences through the here and now and there and then, so insight is gained into the primary memories being shared (Giorgi, 2009; Seidman, 2019). For example, by discussing similar topics with multiple participants, I then ascribe collective meaning to the data. When my participants shared similar experiences, the analysis was then changed from ‘I’ to ‘they’ (Leigh-Osroosh, 2021). This is known as phenomenological reduction; each story is one piece of the collective narrative (Leigh-Osroosh, 2021). In my efforts to understand the research I collected it was important for me to bring together a coherent narrative of lived experiences.

The natural attitude was utilized in two different ways (van Manen, 2016). First, I utilized the natural attitude. I did this by looking at the natural unconscious belief structure of society.

Then, I applied the same principle to the unconscious belief structures that we may hold about ourselves because of societal perceptions (van Manen, 2016). Therefore, the natural attitude is utilized on both collective and individual levels and becomes a necessary component to engage with the multifaceted meanings of the participants stories.

Upon completion of the interview, participants were provided with a copy of their transcription, and they were able to make any necessary changes. This is a method used in qualitative interviewing known as member checking (also known as participant or respondent validation). Member checking is a way to assess the trustworthiness of qualitative research, while simultaneously verifying its accuracy (Doyle, 2007). Member checking also has therapeutic benefits, as research participants can gain self-awareness by finding a voice and venting repressed emotions. Often ultimately, member checking creates a stronger sense of rapport between the participants and researcher (Brigham & Joanning, 1999).

All transcripts of the interviews are securely stored on One Drive on my personal password protected computer. Currently, the Dalhousie Research Ethics Board has no official duration requirement for data retention. However, the data I collected will be stored securely on a password protected external hard drive for five years. This is for possible future publication of the research.

Phenomenology is used as an approach to understand and describe the universal essence of a phenomena. Essences describe the everyday experiences of human beings and believes that all people have unique perceptions and behaviours that structure their everyday realities, based on their experiences of being in the world (Bliss, 2016; Qutoshi, 2018). Due to this we must work to suspend assumptions and stereotypes that are referred to in phenomenology as the natural attitude. Taking on a phenomenological attitude helps researchers to suspend judgements about themselves and focus on the participants stories as they unfold (Bliss, 2016; Qutoshi, 2018).

I used an interview guide (Appendix E) to explore issues of hyper-visibility, invisibility, and ableism as it related to the experiences of the participants. These interviews were conducted using the Zoom platform. In some ways, online interviews enhanced the richness of my experience interacting with others. The reason for this is that there are little to no environmental distractions. You can focus more on the participants eyes and facial expressions, which facilitates knowing when we were connected in an experience of mutual understanding as it related to the topic at hand (Hyde & Rouse, 2022). The participants and I would enter a relational mode that created an ethical responsibility on my part for care. Participants often asked me questions, allowing me to offer my own experiences, further creating the perception of a shared ‘we’ experience (Hyde & Rouse, 2022). For example, how do I feel when people ask me if I wanted to get married? This is a hard question to answer, as I do not know the future or if I even want to marry at this stage in my life. By providing the best answer I could, it helped to reinforce that experiences do not have to be concrete, they can be ever changing and unfolding as we enter them. Additionally, by drawing on this marriage example, I emptied my mind and allowed the participant who asked me the question to draw their own conclusion and return focus back to the research.

The following is a chart provides participant demographics. Participants gave consent for their real first names to be used, other than (S). I want to make note that I appreciate the value of race and ethnicity. However, the only respondents to my invitation were homogenous demographics (white Caucasian). The lack of representation albeit a limitation, in my view it did not diminish the universal shared essence of belonging, acceptance and understanding.

Regardless of the demographics collected and the complexity in issues related to experiences of hyper-visibility, invisibility, and ableism. My approach to data collection draws on the essence of human desire regardless of (dis)Ability, age, race, or ethnicity.

Ethical considerations in phenomenological research involve caring for and empathizing with participants. It’s about understanding and valuing their experiences without judgment or assumptions. I made sure participants understood the research and consented to participate, ensuring confidentiality and respect for their stories.

In analyzing the data, I focused on the shared experiences and stories of the participants. Phenomenology seeks to understand these experiences without preconceived notions or hypotheses. By engaging with participants’ stories, the research aims to uncover the universal essence of experiences related to disAbility, hyper-visibility, and invisibility.

The participants who responded to my study were primarily white Caucasians. While this limits demographic diversity, the focus of the research is on the universal experience of disAbility, transcending race, age, and ability  Researchers Perspective on Participant Diversity

In my study, the varied age ranges and durations of wheelchair use among the participants added depth to the analysis. Understanding experiences of hyper-visibility, invisibility, and ableism from those who have used wheelchairs since birth or since their teenage years provides a rich perspective. This diversity highlights that reliance on a wheelchair and awareness of disAbility can occur at any stage of life.

Each participant’s journey with their disAbility offers unique insights and lessons. Their stories reflect how perceptions shift and adapt over time due to their experiences. These narratives are crucial in comprehensively understanding the phenomenon of disAbility, particularly in the context of societal attitudes and barriers

By including participants with different backgrounds in terms of the onset and duration of their wheelchair use, the research embraces a wide spectrum of lived experiences. This approach ensures that the study reflects a broader range of perspectives, enriching the understanding of how disAbility is experienced and perceived in various life stages

The participants’ stories contribute to a deeper understanding of the complexities surrounding disAbility, particularly in relation to societal attitudes like ableism. These narratives are vital for educating others, fostering empathy, and advocating for more inclusive and understanding societal attitudes towards people with disabilities.

Paul, one of the participants in my study, became disabled in his 70s. This is significant because it shows how perceptions of wheelchair users can change based on personal experiences. Paul’s story helps us understand how someone’s views on the productivity and capabilities of wheelchair users might shift after they themselves become wheelchair-dependent later in life.

All the participants, regardless of their age, shared experiences of being overly noticed (hyper-visibility), being ignored (invisibility), and facing discrimination (ableism). These experiences were common in different stages of their lives, like during their education, in the workplace, while living independently, and in their relationships with friends, family, teachers, and co-workers.

A key part of their experiences was learning how to deal with ableist attitudes and interactions. This involved finding ways to engage with others and handle situations in a manner that matched their own values and desires. By sharing these stories, we get a clearer picture of the challenges wheelchair users face and how they adapt to different life circumstances.

The aim of phenomenological thematic analysis is to describe how individuals understand and interpret situations, this can then bring meaning to their lived experiences (Dokumaci, 2020). The thematic analysis process I used centered around the self and others (how individuals see themselves and relate to one another), the body, the environment, and the interconnection between individuals and their shared experiences (Dokumaci, 2020). What I referred to as shared co-presence, was foundational to my thematic coding and analysis process. Additionally, I set aside my own personal biases and potential societal assumptions that have become culturally embedded in how we think of and interact with PWD. At times this may result in unconscious and sometimes automatic behaviour (natural attitudes) and may lead to feelings of hyper-visibility, invisibility, and ableism. This could be due to the potential of prejudicial stereotypical and discriminatory behaviour. Which may form out of learnt behaviour, causing feelings of exclusion. As a researcher, I welcome a phenomenological attitude that respects the dignity and worth of all human beings regardless of (dis)Ability. See figure 1 for step-by-step process of phenomenological thematic analysis and coding.
Figure 1.
In my research, I analyzed the interviews by identifying common themes. This process, called thematic coding, helps understand how wheelchair users perceive and interpret their experiences. The themes focused on self-identity, relationships, body image, environment, and shared experiences. I made sure to set aside my own biases to accurately reflect participants’ experiences of being too noticeable (hyper-visible), ignored (invisible), and facing discrimination (ableism).

As the researcher, I continually reflected on how the data related to my own life as a wheelchair user and how it differed from the participants’ experiences. This reflection was essential to ensure that I accurately captured the participants’ stories without letting my personal experiences overshadow theirs.

After interviewing participants, I transcribed the conversations word-for-word. Participants were then asked to review their transcripts to ensure accuracy and make any necessary changes. Most did not make any changes, but one participant edited out some personal details.

The study included seven wheelchair users, varying in age and time using a wheelchair. Their backgrounds ranged from students to professionals, offering diverse perspectives on their experiences with hyper-visibility, invisibility, and ableism.

Participants shared their stories about how being a wheelchair user affects their daily lives. They discussed challenges related to visibility and discrimination, and their suggestions for improving awareness and respect for people with disabilities. The findings revealed the resilience of wheelchair users and their desire for recognition of their capabilities, beyond their disabilities.

I connected participants’ stories to existing research, highlighting the real-world implications of their experiences. The study underscores the need for societal changes to better acknowledge and accommodate the needs and dignity of wheelchair users

For direct quotes  for all themes go to website thesis eportfofo metholgy wheelchair users speak out

Understanding Ability in disAbility

 This theme, “(dis)Ability is Not Fragility: The Eye of the Ability Holder,” highlights how participants in the study understand and use their abilities to challenge the stereotypes and prejudices often associated with disAbility (ableism). It emphasizes that people with disabilities (PWD) have unique strengths and capabilities.

The participants demonstrated that their motivation to achieve their full potential is not just about proving their capabilities to themselves. It’s also about educating others and raising awareness about disabilities. This approach helps break down misconceptions and shows that having a disAbility does not mean being fragile or less capable.

The theme also reflects how participants find empowerment and self-respect in doing things their own way, whether in sports, work, or daily activities. They seek freedom and autonomy, challenging the notion that disAbility equates to a lack of ability.

In my personal experience, I have many feelings about the word inspirational. I do not feel it is inspirational to get up in the morning or brush my teeth. However, I do feel that being acknowledged for the extra effort and planning it takes to attain proper supports etc. is valuable to portray an accurate representation of my life as it is truly lived.

Inspiration is often connected to disAbility as a way to understand people based on what others think their abilities are. How people fit into the world is judged by how close they are to what is considered normal. This includes how they think, act, and create their own space.

For example, Chris’s experiences show that there can be a big difference between how he sees himself and how others see him. When disAbility is seen in this way, it leads to a misunderstanding of what living with a disAbility is really like. It oversimplifies the experience and assumes that all people with disabilities have the same experiences, without recognizing each person’s unique abilities.

Allowing students with disabilities to participate in sports shows consideration for attentional reconfiguration. This means recognizing (dis)Abled individuals can do the same or similar things as able-bodied individuals However, they may have to do it a different way, or in their own way. This way of thinking draws attention away from the problem with the body and more towards a problem with societal assumptions that (dis)Ability means inability. This is not the case and when (dis)Abled students are given the opportunity to showcase their ability through sports, it then becomes possibilities for not who I am, rather what I can become.

Ableist assumptions can limit not just the physical and professional abilities of individuals with disabilities but also opportunities for creating universally accessible designs and collaborative work that benefits everyone. For instance, wheelchair users might not be common in real estate, but their involvement can bring significant advantages. They can provide valuable insights for home buyers with disabilities and offer unique perspectives to able-bodied clients. This approach maximizes the potential use of environments, ensuring they are accessible and useful for everyone. Recognizing the expertise of realtors with disabilities is important, and their skills shouldn’t be overlooked just because of assumptions about their abilities.

When stories about bodies not working ‘normally’ are shared, they often support the idea that bodies should be perfectly functional and free of disabilities. This suggests that the ideal body should work well and not have any disabilities. But it’s important to remember that no one is completely independent. Everyone has their own way of moving, though some people don’t have to think much about it. Some environments are designed with certain bodies in mind, making it easy for them to move around without any obstacles, but this isn’t the case for everyone.

Including: invisibility, advocacy/education, vulnerability, and allies.

One wheel at a time, describes participant’s ability to overcome vulnerability, while simultaneously building communities of allies and support around themselves. This can help to help reduce feelings of invisibility.

Allyship means actively learning and constantly rethinking how to work in solidarity with marginalized groups. It’s a continuous process, involving collaboration with those you want to support. It’s based on the idea of helping others progress as fellow human beings, rather than just seeing them as part of a marginalized group. This concept is vital for both allies and those in  disabled communities. As Tabetha suggests, people’s perceptions matter a lot. When we support others’ experiences, the way we relate to them can significantly influence the results.

Allyship doesn’t always have to be about big, bold actions. Even small, simple efforts can make a real difference  Everyone faces challenges, and many can benefit from support and advocacy. When we understand allyship like this, it means anyone can get involved and offer useful ideas for making a positive change

As a student who is a disabled woman and wheelchair user, I find inspiration in the writings of other disabled scholars. Sometimes, though, I’m so eager for change that I doubt my own ability to make a real difference. It’s crucial for me to remember that other voices should add to mine, not take away from the special view I bring.

when thinking about fairness and including everyone in sports, we should not stick to the usual way of thinking that “one solution fits all” or that people with disabilities (PWD) can’t contribute to sports. Each person is different, so the way we include and support them should be different too. It’s important to appreciate and celebrate what each person adds to the mix. By doing this, we can help bring in more leaders who deserve fairness, including in sports.

Reverse integration is a practice where most players are not disabled. This approach helps build a community based on friendships and shared experiences. Being physically active helps people feel more included and confident. It makes them more aware of their social roles and helps create a social reality shaped by social or cultural norms. With reverse integration, a new kind of social world is formed, and for existing sports teams with disabled and non-disabled players, this helps keep strong personal connections.

There’s a door, but where’s the key a metaphor for the challenges people with disabilities (PWD) face in accessing transportation and navigating different places. It means that even though there might be opportunities or services available (the door), the means to use them effectively (the key) are often missing. This points to the need for policies that truly consider the diverse needs of PWD, ensuring they can fully participate in community life without obstacles the idea is that our bodies adapt and change based on what we need them to do. How we use our body is shaped by the tasks and actions we need to perform. For instance, we naturally position ourselves in a way that best suits the activity we’re doing. In the case of people with disabilities (PWD), they might have to hold their bodies in a different, possibly less typical way, to get things done. This shows how flexible and adaptable the human body is in different situations.

Our body is like a space that holds our wishes and abilities, guiding us to do meaningful things. Usually, people without disabilities move in certain ways that are considered normal, like climbing stairs or moving through small spaces. These movements are expected for getting around in most places. But when spaces are designed to be accessible for everyone, it can help reduce feelings of being left out or discriminated against because of a disAbility. Making spaces accessible allows everyone to feel welcomed and able to contribute fully in that space.

Being able to move around easily depends not just on our physical abilities but also on how the environment supports a regular, manageable pattern of life. This means having a daily routine that lines up with our need to be independent and free. This routine can involve things like transportation, easy access to places, and work. These aspects are important because they help maintain our sense of identity and place in the world.

People manage to deal with being too noticeable or not noticed at all by taking on leadership roles, both official and casual. In doing so, they might sometimes mix up different aspects of their life, but they keep challenging the idea that people with disabilities are less capable.

Discrimination can start as unintentional bias, where the person discriminating might not realize what they’re doing. But if they keep acting the same way even after understanding the impact of their actions, it turns into bullying. This bullying comes from a place of knowing what they’re doing and wanting to do it. When someone expects a certain result and uses their power to try to get it, but it doesn’t work out, this is considered a form of behavior that unfairly favors able-bodied people over those with disabilities.

This emphasizes the importance of inclusivity in leadership and the need to challenge conventional notions of space to accommodate diverse minds and bodies. This perspective aligns with phenomenological theories, which examine how different types of bodies experience and are integrated into their environments. The emphasis is on reimagining leadership spaces to be more welcoming and diverse, recognizing the interconnection of minds and bodies and their role in enhancing visibility and interaction within leadership roles. This approach advocates for a shift in our understanding and structuring of spaces, to disrupt exclusionary practices and foster an environment where varied abilities and perspectives are valued and integrated.

Researchers Voice

 The participants amount of time in a wheelchair and age range, enriched my data analysis. This was done by bringing to light feelings of hyper-visibility, invisibility, and ableism analysis. Most participants were wheelchair users since birth or teenager years. It was important for the readers to acknowledge that becoming reliant on a wheelchair can happen at any age (Paul). ( (dis) Abilityawareness can also happen at any age; this can shift perceptions and teach valuable lessons along with personal experiences.

Researchers Voice

It is noteworthy to mention, that Paul became (dis)Abled in his 70’s. Including this data, shows how his perception towards the productivity of wheelchair users in relation to his lived experiences. Regardless of age participants experienced feelings of hyper-visibility, invisibility and ableism across their life transitions (post-secondary education, employment, independent living, changing relationships and perceptions of friends, family, teachers, and co-workers). This required the ability to navigate ableist interactions and engage with others and situations in ways that align with their values desires.

Researchers Voice

When I played baseball, it was an adaptive sport for people with all abilities, however, most of the individuals did have some type of (dis)Ability. A partnership was created between my organization and local high schools for students to receive volunteer hours for helping out in this sport. This is a type of reverse integration that increased (dis)Ability awareness and knowledge of the self-efficacy of persons with (dis)Abilities (PWD). This was also similar to when I was in a (dis)Ability exercise program and upper year Kinesiology students helped PWD.

Researchers Voice

When drawing on my workplace experiences, I can remember a particular incident where entrance to the actual building was accessible. However, once I was inside, access to my actual office was heavy doors that I needed someone to open for me. If there was no one available, I would be stuck inside or outside of my workspace.

Researchers Voice

I face similar challenges when it comes to transportation. These are particularly compounded by living in a smaller community and only having a transportation company whose mandate is medical transportation first. Although I appreciate access to these services, it does limit my ability to do things on a just social level. Unfortunately, access taxi’s can be very expensive and hard to find.

Once the interview was completed and recording stopped, we spoke about next steps, including the transcript verification process. I reminded participants about the debriefing resources (Appendix F – Debriefing Resources), which had information on resources and referrals for support and counselling as needed. I also acknowledge that it is not easy to relate one’s own experience, especially when it comes to noting our vulnerabilities. Sharing that I understood this journey as I had been through it myself hopefully eased their concerns and built a trust on commonality.

Transcription within phenomenology is done by the researcher, the phenomenological term used is data lodgers; this means that the data lives within me, the participants, and the reader as a similar experience (Engward & Goldspink, 2020). I was in constant reflection of how the data related to my own life and how this was similar or different from my participants. It became critical to engage in supervision during transcript verification, so that I could make these distinctions more clearly (Engward & Goldspink, 2020).

Interview audio recordings were transcribed verbatim. There were 106 pages of single- spaced text transcribed from the seven interviews. Each transcript was then checked and reviewed against the audio recording before sending it to the participant for transcript verification. Each participant was contacted via email with the request to review, verify, and edit their interview transcript of any information they did not want shared. Most participants elected not to make any changes to their transcripts. One participant edited a detail pertaining to identifying information. Through the seven interviews, there were approximately 28 minor technical difficulties due to audio issues. This was present mostly in the first interview, due to the participants speech difficulties. The issue was corrected, and the subsequent interviews only had minimal audio interruptions.

The aim of phenomenological thematic coding and analysis is to describe how individuals understand and interpret situations, this can then bring meaning to their lived experiences (Dokumaci, 2020). The thematic coding process I used centered around the self and others (how individuals see themselves and relate to one another), the body, the environment, and the interconnection between individuals and their shared experiences (Dokumaci, 2020). What I referred to as shared co-presence, was foundational to my thematic coding and analysis process. Additionally, I set aside my own personal biases and potential societal assumptions that have become culturally embedded in how we think of and interact with PWD. At times this may result in unconscious and sometimes automatic behaviour (natural attitudes) and may lead to feelings of hyper-visibility, invisibility, and ableism. This could be due to the potential of prejudicial stereotypical and discriminatory behaviour. Which may form out of learnt behaviour, causing feelings of exclusion. As a researcher, I welcome a phenomenological attitude that respects the dignity and worth of all human beings regardless of (dis)Ability. See figure 1 for step-by-step process of phenomenological thematic analysis and coding.
Figure 1.

Thematic analysis and coding

Meaning Units

Categorizing things into basic, meaning units. Such as themes of hyper-visibility, invisibility

Essences (shared co-presence)

Find the phenomenological essence core meaning of my participansts shared experiences as it relates to living and being in the world with others

Reflexivity (questions)

What are the natural attitudes or in assumptions being displayed here?,How may society perceive or understand this issue ?and how did it contrast /compare to what I heard from my participants? How have I experienced this in my own life?

Phenomenological attitude

Single sentence themes around suspending judgements and assumptions

New shared Meaning, Units/Narratives. One wheel at a time
(Includes: Invisibility, advocacy/education, vulnerability, and allies). One wheel at a time describes participants ability to overcome vulnerability, while simultaneously building communities of allies and support around themselves. To help reduce feelings of invisibility.

The following sections will explain why using a phenomenological approach is preferred in the context of ableism, and (dis)Abled bodies. Phenomenology is the approach I used to present facts and accepting them without needing to be shifted. I used the naturalist paradigm as a foundation for analyzing my phenomenological research on wheelchair users. This paradigm focused on the real world. Additionally, the research was not controlled or manipulated (Westhues et al., 1999). This was especially important for wheelchair users as it gave them a safe place to fully express their thoughts and feelings around the inaccessibility and ableist attitudes they face daily. Focusing on real life experiences is imperative for the naturalist paradigm and therefore, is the most suitable option for this research. Often wheelchair users may have little control over societal barriers, such as inaccessible environments, ableist attitudes and stereotypical beliefs. Therefore, it is important to focus on the real-world experiences of individuals, as no experience is the same and each experience can contribute to a phenomenological understanding of being in the world with others (Westhues et al., 1999).

I believe that PWD are experts in their own lives and have faced many years of coercive power. Suppose I did not acknowledge the rawness and authenticity of people’s stories as they were told. In that case, I was at risk of reproducing feelings that lead to loss and, as a result, continued to silence wheelchair users. Human experiences cannot exist in total isolation; therefore, it is vital to display experiences. Wheelchair users are often told by others that they would be better off dead; should not have been born; or should have died at birth. Unlike narrative therapy, it is often hard for PWD to find freedom inside and outside of their story because of the factors that culturally oppress them. PWD are subject to the term normate that designates them to a position of subordination in relation to those who identify with able-bodied appearances. In this way, the able-bodied can step into a position of authority and wield the power this grants them (Thompson, 1996). People with severe (dis)Abilities will always be dependent on someone else to some extent, which exposes them to power imbalances with the potential of creating feelings of inadequacy. Help is tied to normative judgements of what success looks like. Consequently, if desired goals are not reached, resiliency will be questioned, and punitive measures will be taken as an act of discipline (McClure & Caspian, 2021). For example, someone who does not meet desired goals may be subject to loss of wages, employment, or demotion.

Phenomenological approaches are not exempt of criticisms and limitations.

Phenomenology may be viewed as lacking objectivity, due to disagreements about validity and limitations in reliability, compared to other research methodologies (Ngo, 2016). Within phenomenology the focus may seem to be on the researchers’ reflection and collaborative meaning making. Therefore, it may run the risk of a researcher letting their values overshadow participants stories and thus, invalidating the research process (Ngo, 2016). Phenomenologists counter these critiques by relying on the life world of others while bracketing their own experiences (van Manen, 2016). It is easy for phenomenologists to miss what is hidden in plain sight, until they bracket these hidden stories. Bracketing is the preliminary step in the philosophical movement of phenomenology, describing an act of suspending judgment about the natural world to instead focus on analysis of experience (van Manen, 2016).

The phenomenological approach utilizes privilege, shared experience, and objectivity in order to see the varied meanings of life experiences (Engward & Goldspink, 2020). Self- reflection is key in phenomenology and must be used as a gateway to understand that participants’ experiences should not be used in a generalizable manner (Engward & Goldspink, 2020); Instead, they should be seen as one piece of the puzzle to describe, understand, and interpret the phenomenon under investigation (Smythe & Spence, 2012).

Limitations to sampling and interviewing in this study are also a consideration. I did not attend to issues of diversity or race/ethnicity when it came to challenges faced by wheelchair users (Orbe, 2000), as my focus was on their experiences as a wheelchair user.

It would be interesting to delve into cultural and race-based experiences of wheelchair users as a separate study following this preliminary exploration. This research is a starting point for future studies including understanding the experiences of wheelchair users as they relate to instances of ableism, hyper- visibility, and invisibility linked to gender identity, sexual orientation, race, and culture.

The experiences of wheelchair users who experience hyper-visibility, invisibility and ableism is an under explored topic. Through this study seven participants shared insights into their experiences as well as their suggestions for creating awareness and enhancing the dignity of PWD. From the phenomenological interviews, initial understandings were developed around what wheelchair users face in their everyday life. Alongside these findings are autoethnographic contributions entitled researchers voice, where I will share my own experiences as a wheelchair user. I differentiate my experiences by using text boxes as I cannot speak directly of the experiences of other wheelchair users.

The next section will focus on research findings explored through data analysis crafted from wheelchair users storied experiences. The general description of wheelchair users that experienced hyper-visibility, invisibility and ableism emerged from the final meaning units and the following themes occurred within a phenomenological framework which included:

• (dis)Ability is not fragility: The eye of the ability holder
• One wheel at a time
• There’s a door, but where’s the key?
• Whose line is it anyway?

The general description incorporates all the participants’ experiences of living in the world as a wheelchair user and how they navigate through the emotional and physical complexities they may face. It also shows their resiliency and how the challenges they face does not stop them from being or becoming who or what they want to be. En-wheeled is a concept intended to point at a way of being in the world, that is not merely mechanical or practical, but deals with the everyday routines of being a wheelchair user (Papadimitriou, 2008). En-wheels is not a concept my participants used; however, it helps to describe the transition between the unnoticed and taken for granted dimensions of the world with inhibited intentionality (Papadimitriou, 2008).

This mean the affordances given by the environment can at times be limited as a wheelchair user, for example, physical accessibility. When this is the case perceptions of access and inclusion can change (Toro et al., 2020).

All the participants had insights into what they wanted to see improved. This mainly began at the most basic level of human dignity and the recognition that capabilities are present regardless of (dis)Ability. All participants advocated for action that focused on considering the I and the other, this actively demonstrates that participants were able to verbalize their experiences for themselves (the I) and for the public (the other) to educate (Spencer, 2023). As advocated by Gallagher (2018), participants felt that they wanted to create new understanding and improve ways of doing things, by increasing their own practical knowledge of their bodily capabilities.

The introduction provides a comprehensive and deeply personal insight into the experiences and struggles of (dis)Abled communities, particularly focusing on the concepts of hyper-visibility, invisibility, and ableism. You’ve effectively woven in historical contexts, like the eugenics movement and ugly laws, to highlight the longstanding nature of these issues.

Mia Mingus’s quote underscores the importance of acknowledging and preserving the history and experiences of (dis)Abled individuals. Your decision to use a nontraditional e-portfolio as your thesis presentation medium is innovative and apt, given the diverse and dynamic nature of lived experiences in (dis)Abled communities. This approach not only makes your research more accessible but also adds a creative and personal touch.

Your exploration of the Accessible Canada Act and its implementation issues offers a critical view of current policies and their impact on the community. This is important for understanding the gap between legislation and actual experience on the ground.

The definitions and discussions of invisibility, hyper-visibility, and ableism provide a clear framework for understanding these concepts. You’ve highlighted the systemic nature of ableism and its impact on various aspects of life for PWD, which is crucial for understanding the breadth and depth of these issues.

Your personal journey adds a powerful and intimate dimension to your thesis, demonstrating the challenges and triumphs of navigating academia as a (dis)Abled individual. The phenomenological and auto-ethnographic approach of your study offers a rich, detailed perspective on the lived experiences of wheelchair users, emphasizing the need for a holistic approach to addressing the challenges faced by PWD.
These reflections situated within scholarly research serve as a starting point for meaningful engagement with individuals with disabilities and organizations, policies, and individuals that end up serving this population (Ungar, 2018).
What goal of the current needs assessment in your organization?
What is the current thinking around this issue?
Consider differing viewpoints new hires, senior staff, management service users.
What are some challenges that may be faced (budgetary restrictions, staffing
Shortages, lack of expertise in the given area).
Have there been other program models that have been successful in achieving your desired goal (consider an environment scan of related policies/programs and procedures)?
What are of the assets within your organization that you can use to implement this vision (consider staff roles, organizational values/mission statement).
How might your organization implement service user feedback? Written feedback? Consider speakers panels or creative-based methods including creative writing, video making, painting poetry, etc.)

These questions were formed out of anecdotal discussions and community organizing discussions I have been a part of; these questions can serve as a starting point to building more accessible inclusive policies practices and communities.

In summary, my Thesis is a heartfelt and scholarly exploration of the experiences of the disabled community, with a focus on wheelchair users. It offers valuable insights into the complexities of hyper-visibility, invisibility, and ableism, backed by both personal experience and academic research. My work is poised to contribute significantly to the discourse on disAbility and social justice.

• (dis)Ability is not fragility: The eye of the ability holder
• One wheel at a time
• There’s a door, but where’s the key?
• Whose line is it anyway?

The general description incorporates all the participants’ experiences of living in the world as a wheelchair user and how they navigate through the emotional and physical complexities they may face. It also shows their resiliency and how the challenges they face does not stop them from being or becoming who or what they want to be. En-wheeled is a concept intended to point at a way of being in the world, that is not merely mechanical or practical, but deals with the everyday routines of being a wheelchair user (Papadimitriou, 2008). En-wheels is not a concept my participants used; however, it helps to describe the transition between the unnoticed and taken for granted dimensions of the world with inhibited intentionality (Papadimitriou, 2008).

This mean the affordances given by the environment can at times be limited as a wheelchair user, for example, physical accessibility. When this is the case perceptions of access and inclusion can change (Toro et al., 2020).

All the participants had insights into what they wanted to see improved. This mainly began at the most basic level of human dignity and the recognition that capabilities are present regardless of (dis)Ability. All participants advocated for action that focused on considering the I and the other, this actively demonstrates that participants were able to verbalize their experiences for themselves (the I) and for the public (the other) to educate (Spencer, 2023). As advocated by Gallagher (2018), participants felt that they wanted to create new understanding and improve ways of doing things, by increasing their own practical knowledge of their bodily capabilities.

The seven participants all are wheelchair users, all over the age of 18 and lived within the Eastern Standard Time Zone (EST), except for one participant who was in the Atlantic Time Zone (AST). There were two men and five women included in the study, one man is retired from the social work field, one man is actively volunteering as a wheelchair basketball coach, one woman is a current psychology student, and four women are career professionals. All female participants are wheelchair users since birth, and the two male participants are wheelchair users from the ages of 13 and 70 respectfully. Each participant shared their experiences around hyper- visibility, invisibility, and ableism.

Within the next sections, findings from the narratives and stories shared by the participants about their experiences as wheelchair users and how hyper-visibility, invisibility and ableism affect their daily lives. Also included is a discussion with connections to the literature.

(dis)ability is not fragility: The eye of the ability holder.

Including: Ableism, sports, doing things our own way, freedom, and self-respect.
Click above link
Within the next sections, findings from the narratives and stories shared by the participants about their experiences as wheelchair users and how hyper-visibility, invisibility and ableism affect their daily lives. Also included is a discussion with connections to the literature.

(dis)Abilitynot fragility: The eye of the ability holder describes participants abilities to recognize and utilize their abilities in ways that dismantle ableist attitudes. At times when PWD are motivated to reach their greatest potential it is not only to form a strong sense of self, but also for educational and awareness purposes.

I hate the word inspirational, Well I shouldn’t say hate, I don’t hate anything. But one of the biggest things I find, and I talk to people who come visit my basketball team, is they don’t use the ‘I ’word, because it’s not… We’re not…we are inspirational in a way, but not to you. [chuckle] Like if there’s a young kid who wants to get into wheelchair basketball, then maybe Pat Anderson, who’s the best wheelchair basketball player in the world, is an inspiration. But it’s on that level. It’s not because we brush our teeth in the morning by ourselves or get up in the morning, whatever. I’m not an inspiration for that. ~ Chris

Researchers Voice

 In my personal experience, I have many feelings about the word inspirational. I do not feel it is inspirational to get up in the morning or brush my teeth. However, I do feel that being acknowledged for the extra effort and planning it takes to attain proper supports etc. is valuable to portray an accurate representation of my life as it is truly lived.

Inspiration can be linked to (dis)Ability as a regulatory mechanism for understanding specific groups of people based on their perceived ability level (Smilges, 2023). Ways of being in the world are measured by an individual’s proximity to normativity. Measurability works to distinguish roles including ways of thinking, acting, being in the world and how one chooses to construct the space around them (Smilges, 2023). This means how they wish to be portrayed.

Through Chris’s quote it is exemplified that sometimes there will be a disconnect between how an individual see’s themselves, as opposed to how someone else may see them. When (dis)Ability is viewed this way, it provides a conflation of the (dis)Ability experience, that distorts and fails to engage with (dis)Ability as it is lived (Zaks, 2023). This may continue assumptions that (dis)Ability experiences are assumed and universalized, without considering each individual’s unique and varied abilities (Zaks, 2023).

Most of the first comments I got as soon as I got my license was, “Why would you get into real estate? How are you going to get into houses?” Like right there, I was like, “Wow, okay. This is going to be interesting.” So, it’s been very challenging because even after some people have sold their houses, they were like, “Oh, we were going to hire you, but we didn’t want to offend you by asking you how you did your job.” And I’m like, “Okay, two things. Why do you think I want to hear that now? And why the hell didn’t you just ask me.” ~ Tabetha

Ableist assumptions not only diminish an individual’s physical and professional abilities, but they can also hinder opportunities for universal design, and collaboration that can benefit all individuals involved. Although, it may not be commonplace for wheelchair users to be in real estate, something can be gained by their presence. This can offer affordances to home buyers with (dis)Abilities and can offer a different perspective to able-bodied clients (Liebergesell et al., 2023). This means the potential an environment has in which it can be utilized to its fullest potential. This is a good example of how drawing on the knowledge of (dis)Abled realtors should not be discounted solely based on their perceived ability.

Accounts of the body gone awry feeds into ableist assumptions that reinforce the need for the body to be both present and absent (Hall, 2021). Meaning that the body must be present in its optimal functioning and absent of (dis)Ability. However, it is important to note that regardless of ability, no one is totally self-sufficient, and we all have a physiological process to how we move, we just may not have to think about it (Zaks, 2023). Some structures in the environment are built around particular bodies whose movements do not get obstructed when going from place to place (Butler & Bowlby, 1997).

Researchers Voice

I have experienced physical environments that do not privilege my type of movement as a wheelchair user. This leaves me to have feelings of invisibility as I cannot interact with my environment at the level I wish.

It has also made me become aware of people’s definition of ‘accessible’, for example, an elevator after

having to navigate three flights of stairs is not useful.

Researchers Voice

As a current student who identifies as a (dis)Abled woman and a wheelchair user, I often find hope and comfort in reading the work of other (dis)Abled scholars. However, at times I can long for change so deeply that I mistrust the power of my own voice to make an impactful statement towards change. It is important for me to remember that other people’s voices should enhance my own, not overshadow the unique perspective I have to offer.

Including: invisibility, advocacy/education, vulnerability, and allies.

One wheel at a time, describes participant’s ability to overcome vulnerability, while simultaneously building communities of allies and support around themselves. This can help to help reduce feelings of invisibility.

It’s very challenging, so, one of the first houses I sold to a buyer, the listing representative, he obviously had checked out my social media and kind of understood my little speed bump, if you will. He said, “Well, I’m willing to help you. I’m willing to be your legs.” I have one specific person that I usually work with. I’ve always looked at my life like there’s always a way around it. It’s always just the perception of how people see it. So, I wasn’t really worried about the accessibility of houses because I knew independently, I wasn’t going to change how houses all have stairs. ~ Tabetha

Allyship can be defined as an active and consistently challenging practice of learning and reevaluating. What it means is to work in solidarity with a marginalized group (Oppong, 2023). This is a lifelong process that should be built in collaboration with those seeking an allied relationship (Oppong, 2023). It is important that allyship is cultivated under the assumption that allies want to see fellow human-beings progress, rather than seeing them as a marginalized group. This not only applies to allies but supports and collaborates the views of (dis)Abled communities. For example, how Tabetha states “it’s always just the perception of how people see it”. When supporting lived experiences, relationality is crucial, however, the way we choose to be in relation to another person can impact the outcome.
The elevator broke down for a few weeks and people were like, you need to get that fixed, it needs to be working for Lesleigh. She needs to be able to use it. It’s nice when you have those people doing your battles for you in a way. ~ Lesleigh

When engaging in advocacy efforts, one is often praised for doing original, daring, and stimulating work, however, allyship can happen on simple levels, and still be impactful (Lamont, 2019). We need to recognize that most of the world is dealing with some kind of obstacle that can benefit from advocacy and allyship. When we look at allyship in this way, anyone is invited to engage in and give valuable insights into potential roots for advocacy and change (Lamont, 2019).

As a current student who identifies as a (dis)Abled woman and a wheelchair user, I often find hope and comfort in reading the work of other (dis)Abled scholars. However, at times I can long for change so deeply that I mistrust the power of my own voice to make an impactful statement towards change. It is important for me to remember that other people’s voices should enhance my own, not overshadow the unique perspective I have to offer.

That’s the unfortunate part of life. The mindset I have is like, you just might not be good enough for whatever (dis)Ability or no (dis)Ability. I’ve had pretty good conversations with people. It takes years and years of building a relationship to have that conversation. I had two young girls who both made Team Ontario Juniors, they’re not going to make the senior Ontario Team or the national team. It’s just unfortunately not in the cards. It’s reality. Now they’re both getting into coaching at the national team level. ~ Chris

From a phenomenological perspective when considering sports equity and inclusion for all abilities, it is imperative to consider dismantling the natural attitude and stereotypical assumptions that one size fits all, or that PWD are incapable of contributing to the field of sports (Gurgis, & Kerr, 2021). This means that principles of inclusive, equity, accessibility and acceptance should vary from person to person. It should also continue to be recognized and celebrated based on what everyone brings to the table. By prioritizing this world view, we can continue to recruit equity deserving leaders in all areas, including sports (Gurgis, & Kerr, 2021).

I found that I’ve become close with my teammates, there’s no way that I could say it doesn’t mesh well just because of how open we’ve all been with each other and how easily it has been to kind of work with one another. That’s not to say that when I did that kind of introductory to adaptive sports in high school, that it wasn’t taken with a bit of hesitance to all the other able-bodied students that we had because I was the only disabled student that had ever tried any of these sports before. It was kind of their curriculum for those students. So, they kind of had no choice but to try it for the grade. But when I see it as a club or a Team Ontario type thing, the people that are there that are able-bodied, they choose to be there, right? They understand what it comes with. They want to be there. The desire to be there and to learn and to be a part of it is there. And I think that is what meshes it so well. ~ S

It’s funny you mentioned that cause I’m also a published writer, I’m writing another one, it is a children’s book and I took the service dog that I retired, she’s answering every question that I have been asked by little kids. And I put it into a story. I was at work just recently and we had a security guard and the security guard saw me every day come in with my service dog. One day he asked me can I see your papers? I said, you know I have been working here for a while, right?

He says, “yeah, but I need to see your papers.” I said “Well, in Canada we don’t have papers.

What we have is a photo ID. “Well, can I see them, or I can’t let you in.” I argued with him for 15 minutes. I finally got in the building, and I told my boss, and he went and talked to him. He should not be asking right? ~ Liza

Discrimination can result from patterns of bias that manifest from an experience in which the discriminator may not recognize their behaviour (Hedges, 2022). However, after the facts have been presented and an individual still chooses their original behaviour, it then becomes a form of bullying, which stems from a place of knowing and/or intentionality (Hedges, 2022). When outcomes are anticipated, (phenomenologically known as intentions of anticipation) and the optimal outcome is not attained through asserting authority, this then becomes a form of ableist behaviour (Hedges, 2022).

Researchers Voice

When I first moved from Hamilton to Caledonia, service dogs were not permitted in our local library, as it could cause allergens for the patrons. After some time and advocacy, a new policy along with a sign indicating service dog are permitted was posted. Due to the library being a public space, I felt excluded from one of the only social spaces within our small community at the time

It would be nice to see more people in senior leadership who look like us. If you look at leadership, there is nobody at those tables with (dis) Abilities. I think if there was, Cassie, that would be the door for other people like me to get in to help educate. So, my goal would be for individuals in leadership roles to come to the training that I provide to staff. I think even if they try to attend training, it might open their minds up to the possibility of PWD in leadership roles. It’s just a matter of how do you make sure that they attend training? Because I think training is a key to build awareness because then once you build awareness, then you can work together, hopefully to create a meaningful change. ~ Melissa

(dis)Abled bodies need to reorient themselves within spaces of leadership. These bodies do not have to mark the boundaries or edges of change, rather resist the desire to exclude bodies (Vitry, 2021). We must create spaces that intend to extend and inhabit different types of minds and bodies. We must disrupt the taken for granted assumptions of space and reorient our minds and bodies into welcoming and diverse spaces (Vitry, 2021). Phenomenology focuses on spatiality and how certain types of bodies take up and are included in the spaces they inhabit. Bodies and minds are often interconnected and become a critical tool in increasing visibility within leadership roles and how some interactions with others are formed (Vitry, 2021).

So back in May, the 8th of 2022, I did a podcast consistently for 184 days, then for some reason in November, one day I stopped. So now I’ve just given myself the challenge to go live at least once a day just with something, I never have a prescribed, “Okay, this is my content today.” I just go with whatever’s in my head that day, it really helps with visibility. Would it be okay if I talk about this interview? I was gonna be live today, but I didn’t know if it was allowed. ~ Tabetha

Social media awareness helps bring visibility to so many issues, including (dis)Ability awareness (Zingale, 2013). Using live streaming, individuals can further understand that PWD may have similar interests, experiences and struggles that able-bodied individuals can relate to. This also educates society to the fact that PWD are productive members of society and that we have freedom to choose our own paths. Social media invites audiences to “go visiting” (to mentally imagine the lives of the content creators) and increase awareness about whatever issue is being discussed, including (dis)Ability awareness (Zingale, 2013).

Researchers Voice

My approach to conversations around (dis)Ability are preferably informal and authentic. I like to give individuals the space to shape and lead the conversation. That way I am simply the facilitator of open communication. This gives individuals the ability to lead the conversation in a way that makes them feel comfortable and heard

A woman who was in a motorized wheelchair told me that she went to the doctor and he said, you’re not gonna have kids, are you? She replied, I don’t know. He said, well, you ought to get sterilized, I don’t think you ought to have kids. She told him, that she would not be back to see him. Stuff like that is disturbing. ~ Paul

 Ableist assumptions that PWD are unable to have sexual relations, become pregnant, carry babies to full term and be loving parents is demeaning at best (Jorba, 2019). In this case an individual’s outer horizons (the doctor’s attitude) has a direct impact on the individual’s sense of self (inner horizons) (Jorba, 2019). When faced with this type of discriminatory behavior, especially from a medical professional, your inner horizons could signal that you are not seen as a whole person.

A woman who was in a motorized wheelchair told me that she went to the doctor and he said,

you’re not gonna have kids, are you? She replied, I don’t know. He said, well, you ought to get sterilized, I don’t think you ought to have kids. She told him, that she would not be back to see

him. Stuff like that is disturbing. ~ Paul

Participants were passionate about (dis)Ability advocacy for themselves and others. However, the main desire shared throughout the interviews, centered around their ability to maintain a positive identity that included a high level of confidence in their abilities, regardless of if they did this in their own way. Findings from the participants’ interviews and the discussion linked to this literature were presented in this section. The seven participants shared multi-faceted experiences of hyper-visibility, invisibility, and ableism, as well as experiences of resistance. These seven participants who identify as wheelchair users shared their experiences in honest and candid ways, while continuing to move forward authentically with their desired goals. The findings revealed that wheelchair users face many challenges that can result in feelings of exclusion. However, there is much potential for change if (dis)Abled voices are heard and listened to.

Ableist assumptions that PWD are unable to have sexual relations, become pregnant, carry babies to full term and be loving parents is demeaning at best (Jorba, 2019). In this case an individual’s outer horizons (the doctor’s attitude) has a direct impact on the individual’s sense of self (inner horizons) (Jorba, 2019). When faced with this type of discriminatory behaviour,

especially from a medical professional, your inner horizons could signal that you are not seen as a whole person.

Accessibility and the ability to participate fully in society as a human right. Canada has agreed to commit to the entitlement of PWD to engage fully in their communities (Collaborative Specialization in Accessibility, 2023; Human Rights Commission, 2022). As I established, PWD are vastly underrepresented as leaders, when it comes to organizations, workplaces, and the global landscape at large. By committing to the design and delivery of environments products and services society at large is making a commitment to a more innovative resilient and usable way of living for all individual the commitment to a more (dis)Ability inclusive society does not mean we keep PWD stuck in representation spirals of cures and victims. Instead, and means that we include PWD in organizations, listening to voices that are typically silenced around the table. In doing so, these actions bring forward possibilities for creativity, beauty, innovation, and power (BleWett et al., 2016; DeWeet et al., 2023; Kattari et al., 2020; Tussing, 2022).

In my researcher fieldnotes, I was continually struck by how participants coloured themselves and other humans (no labels). This is from a field note reflection I had made in my journal. As I conducted each interview, there were no labels for their (dis)Ability, they took pride in doing this and doing this their own way, there was a not and then and then knowledge meant that society may still label individuals as less than human. However, there is a resistance towards the ableist thinking. Additionally, my interpretation of what I heard my participants say is learning how to colour someone human; with no labels means recognizing what we do not know, what we can benefit from learning, and applying this to initiate change.
Plain language, conclusionThe conclusion presented effectively synthesizes various themes and research findings related to disAbility, inclusion, and leadership from a third-person perspective. It emphasizes the societal need to fully integrate people with disabilities (PWD) into leadership roles, advocating for their inclusion not just as representatives but as integral and influential members of organizations and communities.

The research highlights the significant underrepresentation of PWD in leadership positions, especially in executive roles, and points out the diversity within the disAbility community itself. The concept of “social imagination,” as introduced in the research, is pivotal. It encourages envisioning a more inclusive society where the needs and contributions of PWD are recognized and valued as sources of innovation and change.

Personal reflections based on field notes and interviews with wheelchair users add a valuable and humanizing perspective. The research emphasizes the importance of seeing PWD as complete individuals, not merely defined by their disabilities or assistive devices.

Proposed future directions for social work practice focus on deepening the understanding of the experiences of PWD. These include employing creative approaches for advocacy and awareness. The strategy for disseminating this research through an e-portfolio and collaborations with non-profit and governmental organizations demonstrates a proactive approach to instigating change.

In summary, the research calls for a paradigm shift in societal attitudes and structures towards greater inclusivity and respect for PWD. It acknowledges the complexity of these issues and proposes multifaceted strategies to address them, ranging from individual storytelling to systemic changes in organizational policies and practices. This holistic approach is essential for fostering a more inclusive and equitable society.

As I had mentioned in the beginning of this session, PWD are chronically underrepresented as leaders in organizations. When it came to representing executives with disabilities in leadership roles. Furthermore, a third of the executives with (dis)Abilities have a physical and mobility impairment which accounted for the highest proportion of executives at 356% (Government of Canada, 2019). This percentage is significant because although the study did not indicate the sample size, this was the highest percentage of executives with physical and mobility impairments even though it’s very low with no specific characteristics given it’s a notable reminder that if you don’t have PWD in leadership roles, it can be more difficult to accurately represent the needs of the (dis)Abled community. It is important to be mindful that not all PWD have the same needs. Even (dis)Abled people in leadership roles need to be all (dis)Abilities are unique and both (dis)Abled leaders and community members can engage and serve one another.

It is equally important to understand leadership at the local and community levels. We must understand what is possible through social imagination this refers to the possibilities we can imagine for the future (Joshi & Pappageorge, 2023). This way of thinking can give individuals with (dis)Abilities and communities the chance to imagine and envision alternative ways of living and being in the world. Including alternative ways of organizing and alternative opportunities for innovation and change (Cross, 2001; Daitue, 2016). By doing so, we’re opening and keyway for individuals to better understand their own lies and experiences as well as the experience of others.

Social imagination can create engagement and empower communities to envision the future and to critically examine the structures that underpin our current beliefs and how these current beliefs and assumptions may perpetuate or impede change (Battalova et al., 2020). Social imagination provides the possibility for regaining back control, autonomy and dignity in ways that are meaningful for the (dis)Abled community. Social imagination can enrich our lives, making the work and projects we undertake more meaningful. When this is the case, find comfort and hope in the recommended decisions provided by Peterson et al., (2020), who encourages all communities to promote actions of self-advocacy and change in community attitudes. With the call to action around give me a man community development, striving to create opportunities for learning and reflection from others, society is working towards a more (dis)Ability progressive future. Generating new ideas may create gateways for planning that have the potential to shape action and knowledge when it comes to creating an adequate and sustainable approach to fulfilling the needs of any community (Peterson et al., 2020).

In summary, it is essential commitment to examine self-perceptions and decisionmaking processes that may at times create bias or bureaucratic practices of exclusion. Leadership approaches should provide opportunities for full participation, dismantling of ableism and hyper-visibility, and invisibility. By having the opportunity to influence organizational structures leadership practices and policies that affect so many. This bottomup approach can be a potential catalyst for reimagining a future where the idealized way of living and being in world is not entrenched in ableist and capitalist understandings of typical forms of productivity and performance (Campbell, 2019; Lewis, 2021). Bodies are meant to fit into spaces, as the ground-breaking work of Rosemarie Garland-Thompson (1995) notes, misfitting simply describes a disharmony between the body and the societal spaces it is prescribed to fit. For example, a wheelchair user may experience misfitting when they engage in a space that is not wheelchair accessible. Therefore, their body doesn’t properly fit in with the spatial and temporal context that they are supposed to be engaging with (McKenzie & Scully, 2007).

Disabled bodies and minds deserve flexibility in the face of the competing demands prevalent in a fast-paced society, often dictated by the rigid constraints of clock time. Clock time refers to the inability of time to adapt to the changing needs of certain types of (dis)Abled bodies; this time is typically fast paced and does not allow for flexibility when it comes to how and when tasks are completed. Sometimes the expectations put on a (dis)Abled person may not be adapted to their bodies or abilities (Chazan, 2023; Kafer, 2013; Ljuslinder et al., 2020; Samuels 2017).

When organizations and individuals rigidly adhere to clock time, they may overlook the essential needs of (dis)Abled individuals, including fundamental personal care requirements This conventional thinking around (dis)Ability can lead to missed opportunities for promoting independence and dignity within the (dis)Ability community (Calise et al., 2020). Society as a whole can lose out when it fails to harness the assets of PWD, whether in the workplace or in pursuing graduate education. It’s crucial to recognize the potential for inclusion and growth that arises when we embrace flexibility and adaptability in our approaches to (dis)Ability (Veli Korkmaz et al., 2022). Many of the wheelchair users I interviewed had experienced (dis)Ability since birth, offering them a wealth of rich and intricate experiences to share, filled with depth and breadth. These experiences shed light on issues of ableism, hyper visibility, and invisibility. Their stories were a mix of frustration, hope, and complexity. In my personal experience, it’s often simpler to label individuals with visible (dis)Abilities, such as wheelchair users.

Wheelchair users often rely on their wheelchairs regularly, and societal perception tends to merge the wheelchair with the individual’s identity. Instead of viewing the wheelchair as an extension of their capabilities, it becomes their defining characteristic. Due to the wheelchair’s size, concealing its use is challenging (Winance, 2019). At times, society may want conceal wheelchair use due to discomfort or awkwardness; however, wheelchair users themselves may be more comfortable and accepting of their wheelchair as a form of mobility. What I understood from my participants was “what you see is what you get” – treat us like we are human. I believe that wheelchair users offer unique insights into issues of invisibility, hypervisibility, and ableism.
22reworded In every interview I conducted, participants were not defined by labels of their (dis)abilities. They exhibited pride in accomplishing tasks in their unique ways. This absence of labels highlighted the unfortunate reality that society often still perceives individuals with disabilities as less than human.
23 please add another website page and write the following information right on the website do not include it at the word document only my plane language documents discuss above are in Word Documents this one can be found in a Word document but needs to be pasted right on the website it is called working with organizations individuals and research I will attach it 24 please include a footnote with the directions provided above please label it with a superscript one the reason I referred to disAbility as dis)ability because I wanted to recognize that although the environment and policies May disable individuals with impairments their abilities should be at the front and center of all decision making 25 please ensure this paragraph is not repeated anywhere on the website it should only be placed under the conclusion first paragraph

In my research dissemination efforts through my e-portfolio, I aim to showcase the creative potential of (dis)Ability awareness. This awareness should extend beyond the physical environment, encouraging others to explore diverse perspectives on (dis)Ability and fostering the potential for innovative change. I firmly believe that mediums like poetry and art offer relatable forms of expression accessible to a wide range of audiences. Everything within my e-portfolio represents a singular viewpoint, and I encourage viewers and readers to see it as a window into a world of possibilities. My hope is that my portfolio, along with my ongoing work with potential non-profit or governmental organizations, will inspire individuals to think critically, ask questions, and uncover obstacles hindering progress toward. Moments of deep reflection provide opportunities to address questions that often go unanswered amidst the busyness of daily life and the complexities of running programs and organizations. It’s often the unasked questions that hold the most valuable answers. My hope is that we uncover the unseen, listen to the unheard, and become what has not yet existed. Because ultimately, all we seek is to be seen, heard, and engaged with.

I aim to disseminate my research to non-profit and governmental organizations, including entities like the Toronto Centre for Independent Living, Spinal Cord Injury Ontario, The Ontario Federation for Cerebral Palsy, the Canadian Council for Persons with Disabilities, the Rick Hansen Foundation, Ontario March of Dimes, the Ontario Ministry of Colleges and Universities, and the Public Service Commission, which supports programs and hiring initiatives for individuals with disabilities, among many others. There are numerous organizations, beyond those mentioned here, dedicated to supporting all individuals with disabilities.

First and foremost, it is imperative to note that because my research will be on the World Wide Web, it opens many avenues for knowledge dissemination with the mere fact of its existence, and it opens opportunities to start important (dis)Ability awareness conversations around wheelchair user experiences without me having to initiate the process with much effort. Being on the World Wide Web has the potential to help get the word out at a quicker, more effective pace that potentially can unravel some of the bureaucratic red tape I may face if I reach out on an individual basis. That being said, I understand the importance of initiating and searching out potential allies and partners for this work.

I chose to focus on supporting and exploring the daily experiences of hypervisibility, invisibility, and ableism among wheelchair users because, as an electric wheelchair user myself, I find that my own challenges are inherently complex. While individuals with different types of disabilities, such as hearing impairments, may encounter a range of difficulties, I believe that being an electric wheelchair user for my entire life has amplified my vulnerability as a woman with (dis)Abilities. It is imperative that the work I present to individuals or organizations clearly reflects the experiences of wheelchair users and aligns with the findings of my research study for my participants. Consequently, I intend to explore opportunities to involve my study participants in collaboration with these organizations, provided it is acceptable to do so.

I believe it’s crucial to maintain the active involvement of my participants in the collaborative process. They represent a significant cornerstone of the (dis)Ability awareness initiative, and as a researcher, I aim to showcase possibilities for engaging members of the (dis)Abilities community. My participants generously shared their stories with me, and their (dis)Ability awareness journeys belong to them, not me. In line with this, I believe it’s essential to grant PWD and my participants the chance to voice their own experiences. Considering that individuals with disabilities may require additional time and scheduling support, this could be a long-term goal. I may begin by presenting my research initially without my participants’ attendance. In the long run, I aspire to establish an advisory board with my research participants to present to potential organizations, conferences, and governmental bodies.

When contemplating how to genuinely engage with individuals with disabilities, we must delve into the concept and expectations of authentic leadership. Authentic leadership is a style that prioritizes genuine, transparent, and self-aware leadership. It involves leaders staying true to their values, being open and honest, building trust, and making ethical decisions (Gardner et al., 2021; Helmuth et al., 2023). Exploration is crucial for comprehending the depth and intricacies that each unique individual brings to society.

It is essential to challenge preconceived notions about what constitutes authentic leadership and recognize that authenticity is a dynamic process. It isn’t a binary condition; instead, our ability to act authentically is profoundly influenced by our ever-changing psychosocial and emotional states. These states are shaped by the environment we inhabit and the beliefs we internalize through our lived experiences. In our pursuit of resources and engagement strategies to unlock the leadership potential of individuals with disabilities here are, I draw upon the knowledge I’ve gained over many years of community organizing in my personal life

These reflections situated within scholarly research serve as a starting point for meaningful engagement with individuals with (dis) Abilities and organizations, policies, and individuals that end up serving this population (Ungar, 2018).

What goal of the current needs assessment in your organization? What is the current thinking around this issue?
Consider differing viewpoints new hires, senior staff, management service users. What are some challenges that may be faced (budgetary restrictions, staffing Shortages, lack of expertise in the given area).
Have there been other program models that have been successful in achieving your desired goal (consider an environment scan of related policies/programs and procedures)?
What are of the assets within your organization that you can use to implement this vision (consider staff roles, organizational values/mission statement).
How might your organization implement service user feedback? Written feedback? Consider speakers panels or creative-based methods including creative writing, video making, painting poetry, etc.)

These questions were formed out of anecdotal discussions and community organizing discussions I have been a part of; these questions can serve as a starting point to building more accessible inclusive policies practices and communities.

The world may not always be accessible but (dis)Abilities communities are ready willing and able to speak out see us hear us ask us.

It’s Friday July 5^th, the sun is shining, it’s a beautiful day. I called up Monica and asked her if she wanted to go out for dinner. We set a date to meet at Celebracion Café at 5:00pm.

Upon arrival we search for appropriate parking, to discover that the person parked next to us has encroached over the line. Therefore, there is not enough space for us to lower the ramp so I can exit the vehicle. Finally, after what seemed like an eternity waiting for them to move their car, I realized that the ramp for the plaza sidewalk was halfway across the parking lot and was extremely narrow. With some assistance we finally navigate the walkway to make it to the front door, only to find it has no automatic door and a double door entry. This makes it very difficult as Monica cannot hold both doors open at the same time. To make matters worse, people are walking right past us, thinking she is holding the door for them. Finally, we are inside after 20 minutes of battling over the inaccessibility of the plaza and restaurant. Monica and I make our way towards the hostess desk, making sure not to run over anyone’s feet, as the space is quite small. Once we get the attention of the hostess, we ask for a table for two with wheelchair accessibility. We are directed towards our table, followed by the stares and glares of other customers. Instead of receiving two menus, the hostess only gives one to Monica, so we ask for a second one, only to get an eye roll from her. It has been a while since Monica, and I have had a chance to get out together and enjoy catching up. The hostess arrives back at our table with a child’s menu and crayons. Our server comes to take our order and directs all her questions towards Monica and acts as if I’m not even there. She asks “what can I get you and her to drink, are you ready to order?” I immediately start speaking, and the server turns a tomato shade of red. After I finish placing my order, the server looks back at Monica and says, “okay I will bring you and her your drinks.” Our drinks and food arrive; however, we notice only one set of cutlery on the table and have to ask for a second set. While we are waiting for the cutlery, Monica goes into our prepared bag and gets my special cup (because the restaurant cups are too heavy) and my tea cloth (to cover my shirt). Once we have the cutlery needed, Monica assists me in cutting up my food and placing the plate on my right-hand side and filling my cup up with the drink I have ordered. When our server returns to check in, she still directs her questions to Monica as if I’m not there. We finish up our meal, ask for the bill and venture back out into the accessibility nightmare. Even though Monica and I enjoyed our time together, it is very hard to fully appreciate our time catching up, due to all the obstacles and stereotypical assumptions made towards me.

Monica and I are best friends. She has her PhD in Social Work. I met her while I was completing my BSW (Bachelor of Social Work). Together we have worked on building communities for students with mental health issues and/or other (dis)Abilities. We are not strangers to the world of stupidity, being silenced or being forced into taking center stage, but with a little humour and help from each other, we get by. We have ditched the metaphorical business suits and fancy ties along with that all knowing attitude, we refer to those people as ‘shiny people’. Pretty things deserve to be shiny and the situations we find ourselves in leave much to be desired, but one day we will write a book. Our dining experience would be one of the many chapters. We are both irritated but unfazed, I guess if you wear your suit too tight it can cut off valuable oxygen to the brain. When Monica and I decide to get together, we are free from our daily routines of preparation and worry. We are just two friends going out for dinner. Monica and I recognize that this goes far beyond stupidity, rather this situation is layered and can create structural, cultural, and interpersonal level oppression. However, this is our way of removing ourselves from an ableist culture that we are inextricably a part of. There may be similar cases with ableism that my research participants encounter and hopefully will be able to share how they deal with those situations.

The purpose of this story is to show how hyper-visibility/invisibility ties into ableist constructs. I recognize that the built environment is essential in terms of physical access. However, we must acknowledge that the access may be available, but it is often not collaborated with wheelchair users. Therefore, in some cases full and unhindered access is not truly attainable. Restaurant managers and owners may be hesitant to increase accessibility in their facilities due to increased cost and less revenue (Rosetti, 2009). For example, if seating was spread further apart for wheelchair access it would allow for less seating for able-bodied customer use (Rosetti, 2009). It is important to remember the differences between universal design and accessibility.

Accessibility proposes solutions for the (dis)Ability community and universal design is focused on the usability of the environment for all person, regardless of their ability (Spence, 2018). Universal design creates solutions that work on a continuum as people are trying to design their facilities to be as inclusive as possible. If you imagine universal design on a continuum, you still may not account for everyone’s needs, however, there is less of a chance of not attaining the desired outcome if you do your best to consider the needs of everyone (Spence, 2018). Finding the right design that incorporates the various accessibility needs of different groups may be challenging (Spence, 2018). By using universal design access always- already exists in everyday structures without drawing attention to the accessibility requirement (Suetzl, 2022).

In phenomenology the term always-already refers to things that have been always-already there. When thinking about the built environment, they are structures that have been incorporated within the design and not something that is added due to special needs of a specific group (Suetzl, 2022). For example, having lower sinks and mirrors in restaurant bathrooms benefit wheelchair users, however, it can also benefit young children, little people, seniors with walkers or anyone else who is short in stature (Suetzl, 2022). Rate is an instrument used to evaluate the functional accessibility of restaurants that includes dining areas, restrooms, education for restaurant staff, entrance ways and indoor pathways (Park et al., 2020). Using this assessment tool in the planning process can help reduce feelings of ableism, hyper-visibility, and invisibility. This may help to give PWD more equitable access to restaurants and enable them to be able use the restaurant setting as a platform to engage in social relations with others, thus reducing social isolation (Park et al., 2020). When it comes to universal design, our actions are more important than our words. Without action this may lead to (dis)Abled bodies being subject to exclusion within the built environment (Slayter et al., 2022). However, through education and self-awareness we can help society suspend natural attitudes and using their inherent able- bodied privilege (the ability to move freely within society without mobility/accessibility issues) to help create change.

Education goes far beyond understanding accessibility needs, it may also include such areas as inclusion, inter-personal interactions and the visibility of the lives and desires of PWD. This was clearly demonstrated in the video above where a woman in a wheelchair is refused access into a restaurant due to her inappropriate footwear as the manager informs her that she must be in high heels Regardless of the varying experiences presented in this video that may impact (dis)Abled/Abled perceptions of lived experiences, I will continue to selectively delve into the themes of invisibility and hyper-visibility, which are fundamental to the video’s message. This selective approach is employed as a relatable mechanism applicable to phenomenological analysis Within today’s culture, beauty ideals are closely tied to affordances that allow recognition within society, as these normative bodies gain visibility and tend to be celebrated rather than stereotyped (Pettinicchio, 2021). As research shows, some people in wheelchairs may be told they are too pretty to be in a wheelchair (Pettinicchio, 2021). However, as the video from Dramatize, (2021). on, we can clearly see that even when the woman in the wheelchair buys appropriate footwear, her interactions are still entrenched in invisibility, hyper-visibility, and ableism.

A system of social closure and domination happens for some people with (dis)Abilities, as some are seen, but not all (Hoppe, 2021). For example, in the video when the woman in the wheelchair is refused washroom access, the waiter states that they are not made for people like her(Dramatize Me, 2021). Access to washrooms is a human right and often lack of access to washrooms is not even questioned, because it is considered common place sensible; some bodies fit, others do not. (Titchkosky, 2008). Additionally, when the woman is refused, several meals off the menu and told she is not welcome here. The impact of this statement is summed up powerfully in the video when the woman states, ‘You don’t see a person in me at all’ (Dramatize Me, 2021, 2:30).

In phenomenology our perception and language are a gesture that carries meaning within worldly interactions (Merleau-Ponty, 2002). The language we choose to use to justify truth claims around inaccessible washrooms may help to justify why they may not be available (Titchkosky, 2008). For example, saying that washrooms were not built for people like you, may give the restaurant a sense that their logic operates on sheer sensibility, regardless, if the perception is seen as good or bad. As a result, natural stereotypical attitude then becomes unquestioned and ingrained.

As one can see lives PWDs are complex. all human beings deserve to be treated with dignity and inclusion regardless of their appearance. Often those that may be viewed as powerless are powerful (the closure of the restaurant) accountability is critical; exposure is essential.

The first part of my reflections will detail my personal experiences and how they make me feel as a wheelchair user, a researcher, and a human being. I will then segue into brief academic analysis. I feel it is important to add my personal reflections, as I have a vast knowledge of firsthand experiences when it comes to wheelchair usage and how ableism, hyper-visibility and invisibility can affect your life. In essence, phenomenology is about shared experiences, so as a researcher and wheelchair user, I am aware of many ways of accessing the richness of living with a (dis)Ability that falls outside of academic literature. It is important to engage with all audiences, this includes the public, so by adding real life accounts, instead of only academic work, I feel that it engages more with the reader and may help to draw attention to accessibility and the need for attitudinal shifts towards (dis)Ability. If the public remains mostly unaware of what ableism is and how it impacts people with (dis)Abilities, by not including firsthand accounts and testimonials, we may exclude the public from helping to become change makers and part of creating equitable solutions for change.

This collection combines truth, humour, love, hope, and inclusion. My lived experiences as a wheelchair user have shaped this collection. I hope to create awareness and space for change. My intention is to get audiences to think and question some potential assumptions and what some might take for granted. Additionally, I invite readers to reflect on what is working, and for potential allies to give voice to underrepresented populations. To continue their interpretations and continue their writing.

It is impossible for me to know everyone’s (dis)Ability experiences. When I refer to I it is because I’m speaking from my personal experience, from the heart. The use of the word YOU does not suggest personal responsibility but references wider society. In my opinion, this poetry continues to be unfinished. No matter how many readers pick up this book, no single experience is the same. This is just the beginning of a long journey.

I have always been intrigued with using poetry as a form of expression. It was important while writing to keep a clear vision of who I am as a person, regardless of discrimination/barriers I face daily. I wanted this poetry collection to be a reminder to myself of the strength, resiliency, creativity, and fortitude I possess. Even though (dis)Ability may be a sensitive and uncomfortable topic, it deserves and needs to be expressed in whatever way makes the individual feel heard, seen, and accepted. There were times while writing, I felt very lonely and angry. However, once I completed the collection, I felt a sense of release and was able to envision future possibilities where I may be accepted for who am, not what I am……(dis)Abled.

Through writing, I deliberately made a choice not to accept full responsibility for all the societal changes that may need to take place, instead I decided to bring awareness and realize that change is something we are all responsible for. I order for change to happen; it may require looking at some parts of ourselves that we may be unfamiliar and uncomfortable with. This includes not only those that may be considered able-bodied, but myself as well. I really struggled to continue with the positive vision of my own strengths and resiliency etc., but I knew if I did not take this approach, it would be very difficult to manifest in my everyday life and future possibilities for the growth of the (dis)Ability community. In my experience hardships and barriers are familiar encounters, that I almost have a pre-written script that details the steps I take to navigate the specific situation. Even though following the script may not end up with the outcome I was hoping for, I follow it anyway. For example, when hiring a personal support worker (PSW), I detail my needs through an advertisement, I post the ad in hopes of finding an ideal candidate, I usually get the same conversation of what their expectations are for the position, not what my requirements are. Then I get the pre-emptive comparison to nursing home policies, even though I am not in a nursing home, and do not require two individuals to assist me. This makes me feel invisible, as I feel I am always trying to justify that I am a good person to work for and I am very respectful and understanding of my PSW’s needs.

I try to redefine my invisibility and/or hyper-visibility on my own terms, meaning that, yes, I may need assistance from a PSW, however I am capable and willing to give back. This is a similar situation, when I think about simply wanting to have dinner with a friend.

However, there is nothing simple about it, I must make sure where we are going is accessible, that I am able to get appropriate transportation to get there, and that my transportation is available for the day we determine. In the end I am still able to go out and have a good time, enjoy food, conversation, laughing and connection. However, the planning and scripting that is required to achieve the result, is very time consuming and stressful. My intention for using these examples, is to show that on the inside I have desires that are very similar to the rest of the world’s population (getting my needs met). However, getting my needs met requires patience and creativity. Through my poetry collection, I want readers to start to understand that (dis)Ability itself is not complex, but we approach the (dis)Abled body ways that are sometimes unnecessarily complex. I feel this creates feelings of ableism, hyper-visibility, and invisibility, as I attest to within my poems.

In phenomenology poetry is used often to illuminate the lived experiences of PWD and can be effective in streamlining shared experiences. In doing this, it brings a presence to (dis)Ability by specifically using metaphorical language to unpack the categorical nature of (dis)Ability, the familiar representations of (dis)Ability are brought into unfamiliar constellations (Kuppers, 2009). This is done by changing the audience’s perspective of an individual or situation, for example from a quadriplegic wheelchair user, to an academic. Poetry and (dis)Ability are machines that hold both tension (commonly held beliefs) and agency (self- awareness). Society may be the magicians that change me into who they perceive me to be, but this is not the reality of who I am or what I am capable of, despite the barriers I may face (Kuppers, 2009). Poetry helps describe real world activity and/or experiences as they unfold, and it describes the doing action of the public or institutions that may create exclusionary practices (Sørensen, 2009). This may be an unconscious action or an action that may be based solely on physical ability. For example, in my poem entitled ‘Ableism Is’ I talk about societal perception around ‘the (dis)Abled body’. I intentionally kept my sentences short, so that I can engage fully with my own thoughts and feelings. ‘Sticking to the image’ is commonly used in phenomenological poetry because it helps to interpret actions rather than the symbolism of what the author is trying to convey (Serbena, 2022). Doing this helps the reader remain more attentive to the message being conveyed and creates a realization of the human condition. By uncovering it and launching it into the world as a form of truth, this is known as poiesis (Serbena, 2022). In my writing I intertwine personal experiences among attitudinal, structural, and systemic barriers that help to ‘stick to my image’, and my form of truth. My intentional use of language helps readers to take a very sensitive topic and turn it into something that is more manageable and understood.

My poetry intends to take the reader on a journey in which my truth about the human condition is expressed through my perspective. As I acknowledge in my writing, there are many ways of being and it is my hope that (dis)Ability will become a more celebrated way of being. I hope you can share in my emotions while reflecting on your own and together change can happen.

My wheels of life have been a study companion

They have been with me and impacted me since the beginning of their time

But they’re not all of me. They celebrated with me

Sat silently with me, in motion without the use of my legs they challenge me,

they show me innovation at times there is heartache. The wheels run me over

I hope the wheels keep turning as we recreate an authentic future with creativity, innovation and difference

The wheels will be able to carry and circle other communities they are the perfect shape for creating continuance

May people be able to use the cogs of their wheels to create a position in which they feel they fit perfectly

Hopefully, there are other communities of wheels that will roll in solidarity I’m not pretending that this will be easy, accepted or supported.

Wheels and communities in motion fit better when they travel together.²

Ableism is assuming resistance is ungratefulness or stubbornness¹ Ableism is being inspired by our existence Ableism is thinking you know best

Ableism is believing that accommodations mean less work Ableism is assuming we want and need to be fixed Ableism is reducing our lives to dollar signs

Ableism is a lack of opportunity or resources Ableism is assuming strength and time heal you Ableism is a lack of responsibility

Ableism is silencing voices

Ableism is underpaid work because of (dis)Ability Ableism is checkboxes proof and application forms Ableism is survival

Ableism is prioritizing what essential needs matter

²Polish my writing Footnote for poetry section can take a lot of cheese formatting is not intended for the section as poetry is freestyle and free expression additionally, I am the author of the entire book so there is no need to cite separate authors. Full citation in reference section

Ableism is endless self-marketing and promoting Ableism is shaming bodies and abilities

Ableism is limiting possibilities by minimizing (dis)Ability as a change agent Ableism starts and ends with YOU

I am more than my (dis)Ability, but still need your help I am powerful when heard

I am strong but not indestructible I am patient but not aimless.

I am shifting but not disappearing I am accountable but not sorry

I am loving but won’t be unlovable I am learning but knowledgeable.

I am open to your words, but I’ll tell you how I feel I can forgive but expect change

I am seen but not special

I am okay being alone but will resist isolation I am (dis)Abled, but together we are able

Stare, but don’t be afraid

Stare, but know we’re headed in the same direction

Stare, but know we all have 24 hours in a day mine were productive too- Stare, but know I’m a woman

Stare, but realize my wheelchair is a vehicle just like your car

Stare, but know I see you

Stare, but know my fork doesn’t talk or the food I eat with it

Don’t stare or ask others – speak to me. I bet I’ll surprise you with my answers

With the flick of my wrist, I push my chair forward I lean it back like I’m laying on clouds

I can make knowledge read and write

Make connections beyond the width of the stage I can communicate all day and night

The crowd goes wild as imaginary ‘try me’ buttons light up the room Talking, moving, thinking too!

The stage is mine

I can fill it up with the flick of the wrist, tongue, cheek, and jaw! A young boy running toward me, happy

I twirl him using my chair

I get cards just for being there

People come up and touch my soft hands

I ponder my day and wonder when cash will be in the hat I wouldn’t mind a few more knickknacks

I smile to myself, but I am tired

I will go home eat, sleep and stretch my brain to maximum power. If you thought today was inspirational

Next time can you throw me 100 or two?

May there be less of a need to window shop To learn through the process of elimination To compare and analyze yourself

To choose the least harmful option To sacrifice well-being

To figure it all out To say you’re okay To work so hard To never give in

To have endless energy To keep searching

To build your future To get it just right

There is only one of you You must be valuable You must be true

Suppose it looks like the truth is not possible Then, believe it takes more than you

Times not up yet

Times not up yet. Hold on tight Times are not up yet. Hold on tight Blast that music

Talk it out.

Write

Create something only you can understand. It’s for nobody’s eyes, ears, or heart but yours. Hold On Tight.

Times are not up yet.

Don’t settle for less. Speak out loud.

You know what you need Repeat, repeat.

Advocate. just hold on tight times not up yet

People don’t know you as you know, you Time is yours because times not up yet.

As long as you choose to be here, people and support are responsible for giving you time. As long as you’re here, times not up yet because you are accomplishing living

Don’t tell. Don’t scare Don’t tell, don’t offend

Don’t be meek, but self-monitor Be productive but independent Feel but don’t cry

Be knowledgeable, not overbearing Be powerful but know your place

Tell your story but don’t write the chapters Fight but don’t win

Despite this, own your story write the chapters the way you know and create them Disrupt the status quo, be powerful

Your story may help someone else begin to rise and thrive

I know your fears hold a passion

I know your loneliness holds a vision I know your pain has a rich history

I know your authenticity is love I know your anger is knowledge

I know your breakdowns are moments for connection

I know your need to structure is about necessity and independence I know your words are opportunities to listen

I know your questions are opportunities to reflect

I know your situation allows me an opportunity to challenge myself and grow I know your life is yours

Love loud, and question Love loud and be proud Love loud and act

Love loud but change what love sounds like and should be Love loud from the outside in

Love loud and integrate Love loud and find a way

Love loud and say yes

Love loud and know that every bit matters Love loud and feel the importance

Love loud and hold steady

Love loud and connect to your values Love loud but like no one is watching

Love loud, and you will be able to feel the quiet and unique vibrance of those around you

I am not a superhero, but I can move fast I am not special but rather badass

I have learned to navigate this world in these changing times It is a prerequisite but I’m not gonna sign

Times are not changing for me, and my wheelchair

and even hocus pocus won’t end the love we share Often we’re off balance because life is such a challenge

But we can make it work when humour is mixed among the hurt

Use your imagination, laughter, love, and play You know your world and ways from the start Speak out loud and from the heart

Heal in being heard

Utilize community. Uproot assumptions

Manifest your vision

Access = acceptance of your authentic self

Niche (Create a)

Independent and interconnected (Be)

Take Back your power

You are enough

Energy work is a flowing life force Freedom from limitations.

Freedom from your mind.

Complete acceptance. Your body is working for you. Every part of you is working with more and more ease

Your body and mind are not against you.

Not talking, for, to or about you, except to show you love. The fight has quieted between your mind, body, and soul Things will release as needed. Give yourself permission Be in the moment.

Be with the flow of life.

(Dis)Ability will never change. But it is possible.

You can get your body and mind to work for you with proper support, not against you. Your body can show you compassion and receive it.

It is possible to be at one with the world and not feel guilty about it.

Our bodies and our minds can do right by us, and you deserve the opportunity to experience this Whatever it looks like for you. And whatever you need in the process

This experience is all about you Ask for expression, ask for support.

You’re not any less worthy because you’re not doing this alone. However long it takes. You are safe and protected here. No masks, you are you and only you

You are doing it, and your body and mind is showing you a different way. Let things unfold and grow to be mindful,

Let your body go, let your heart unfold, and let people meet your needs in the process.

I come in you think you know my story Pen ready, you have me figured out

I am searching for the words that make sense things that are real I’m drowning in your clinical babble

Your inaccessible, just like the office

You’re telling me to change my thoughts but remain unaffected, by what I share You tell me things take time but rush my process

You try and cure me with logic and assume my own is faulty You can have expectations, but mine are unattainable Shadows are okay with light

Pain is okay but must be time-limited Living is okay, but survival is dangerous

—————————————————————————

I know healing begins when you listen and learn my story When pens are down, and souls are invested

When you speak from a place of vulnerability rather than a textbook When you value time and your contribution to it

When you accept that logic comes from lived experience and trust my words and actions When you realize the expectations I have, place value and commitment on myself, the relationship, and the healing process

When you believe that through shadows and pain, voices in their purest form are validated When you know that survival is the deepest act of self-respect and love

When you are humbled and honored to walk beside me, not in front of me When you hold my load with me

When you remember your pain When we are human

The natural lifecycle of the tree as it drops its leaves

Predators become naturally instinctual when they feel endangered.

Animals intuitively go back to different habitats as they wait out the winter months. Snakes that shed skin

Butterflies that cocoon until they are ready to transform Flowers that bloom.

Eggs that hatch

Babies that cry then learn to interact with the world

We are all capable of natural metamorphosis. Take action. Don’t wait. Let’s begin this process by putting marginalized voices front and center The rest will happen naturally

Like spiders spinning a web

We can step out of our web to gain a deeper understanding and knowledge.

Travel is not a choice; travel is not the act of getting to and from places It has little to do with raising fuel prices or owning a vehicle

The traffic on the roads of life halting my spontaneity. I thump schoolbooks, not stadiums

I don’t navigate shopping malls; I navigate my ability to wear what is sold

I don’t book travel agents; I recruit help for my next bathroom trip or school assignments Money is not access to travel; money is compensation to travel to the shower to the subsequent

appointments if my agents will take on the risk without knowing where they are landing They may hit all the stop lights, and I will have to navigate roundabouts

I take route after route to be able to access my home, my life, my community

It’s not a commuter’s dream, but the journey is more manageable with more passengers.

I am continuously examining the power of words. The way they are used have the power to divide and unite people.

As human beings, we have an incredible gift to be able to create language. Language, that can be heard and received by others.

We can accomplish this by beginning to unlearn what we have seen and been taught about (dis)Ability

So, I ask you how are you using your ability to mobilize language?

Have you thought about the power you’ve been given to share, receive or resist the language of others as humans communicate the meanings of their lives

Persons with (dis)Abilities often are placed in positions where they must interact with systems that make the language of change impermeable

Sometimes diagnosis doesn’t even place someone a cut above the rest for support

How do we convey the views and needs of others when they cannot use language, what is our responsibility?

We must continue to use language to begin to initiate so many shifts that are needed in the world. Observe, but speak your truth.

Research, but share

Use language carefully and with intention Stand up and know when it’s time to sit

Society must push for the things that cannot be seen or it won’t come into view

Must push for the things that do not seem like viable possibilities, or they will never become choices.

We must use language for a better tomorrow or to make a small change today Think, speak, share, and act

The start of my day begins.

The personal support worker places the equipment to lift me up and roll me from side to side. Then, putting the sling under me.

It takes some time

My legs hold captive the pillow that was holding my feet apart last night. Tell my body to relax. Nope.

Move my legs. Wrong again

Sometimes it’s a matter of performing a Houdini move so we can quickly flip the pillow out from underneath me.

Then there is the upper body torso.

I never knew my body was so good at the bulldozer impression. My morning routine is a lot like the bulldozer.

My sling is a padded scoop holding my body in a cocoon-like shape, attached to a machine driven by others to transport it. the goal is no body spillage

A backwards maneuver to enter the bathroom as I am on the commode chair Back in my room for washing and powdering.

Attempt to get dressed.

I feel like the dressing process it’s like a game of operation. Touching my muscles before the stiff ‘buzz’ sounds the alarm

If my muscles react the wrong way, the buzzer takes all! Muscles one, clothes zero

My personal bulldozer and its gadgets ban together once again back to my wheelchair My hair is an easier beast to tame.

As I eat, I think to myself, there’s not one way, there is no right way, but there is our way

Cripping education One task at a time

Changing the meaning of the ‘good’ (dis)Abled graduate student Putting my voice forward to lessen the power of other’s voices By redefining and expanding productivity

Knowing I am an expert in my own life Questioning preference over necessities

By using creativity to open doors to possibility

Life experience is a vulnerable form of highly praised critical analysis skills To take up the space, I deserve

Mistrust, I am in the process of unlearning Inflexible, I know what is right for me Emotional, I am intuitive

Needy, I am interdependent

Over barring, I am holding myself and others accountable

Anxiety, I want to express your value

Lack of self-worth, I can be selectively authentic. I can choose when to praise myself because I know my self-worth and when others value it

Over analyzing, I have profound awareness and value when others respect my need to prepare

Holds on to pain, I know what conditions allow me to release. I will wait for them

Negative, my truth has value, I am realistic

All too often my inner world feels disjointed and restricted I ask myself “where do I fit in this world?”

I look around and see mechanical lifts, assistive devices, and a defective body My answer: not with the ‘normals’.

Inclusion criteria, the efficient performance of the white able body.

When the “normals” come into contact with this extraterrestrial community, the list of minimum requirements will become a mission to abolish any social emotional or physical differences Thoughts and feelings squeeze my insides it’s a struggle to control my burning eyes

The expanding lump in my throat and my stiff tingling body feel soulless, a human shell My words are caught; the shadowy figures get louder each carrying their own stories:

BROKEN
EXPECTATIONS
DEMORALIZED
INVISIBILITY

As my parents or support workers drop my daily meds in my mouth they travel a short journey, priming my preferred demeanor each pill taking on my inner world

My shadowy figures rising dislodged from their home within me

Each one takes its place, despite being in a seated position in my wheelchair

My limbs are rigid due to muscle spasms my phantom like figures curl around my misshapen body that could have and should have been ‘normal’.

Surgeries didn’t fix me, my phantom figures act like an overly amused sideshow, still holding to hope that anything can change if ‘I put my mind to it’.

My feelings can drown me, and my inner world leaves me to battle some of the harshest storms These storms remain docile to onlookers ‘the thriving student, the genuine connector’.

I have an inner drive to live, see and create change.

This I am thankful and excited about, I am also hurt, angry and exhausted.

My body is more than a site of inspiration, it carries and has carried relentless emotional and physical pain and is a site of endurance

My eyes carry a unified vision of humanity, while they cry tears and watch fear grow. My tongue has been silenced; my words have been squelched

My words speak the language of solidarity to all those with lifelong impairments. (Dis)Abled communities don’t have to accept a society that (dis)Ables with words representations lack of and sterile interactions

To my family I love you, I am forever grateful for your endless support, thanks for all you give physically and emotionally because of this, my life extends far beyond my wheelchair

I so appreciate you’re unwavering values of love, inclusivity, adapting and spontaneity To my friends, thank you for your deep love and commitment

You have taught me so much about strength and how to be a radical and an authentic ‘badass’, love you all.

To my professors and mentors your teaching has enabled me to write and connect to my own voice.

To redefine and recreate a world based on social justice, self-acceptance, beauty, and autonomy. So, this is a call to humanity are you willing to sacrifice comfort?

Challenge yourself at a core level This is not an individual responsibility What role will you play?

As I write, I re-imagine community As I write, I see more possibilities As I write, I see unification

As I write, I see validation As I write, I see resilience

As I write, I drop the labels and assumptions As I write, my heart is ready and waiting

As I write, I fight As I write, I plan

As I write, I am equal

As I write, I see responsibility As I write, I know a way forward

As I write, I hear acknowledgement of misinformed speech and actions As I write, others see me

As I write, I see myself

(Click on above link)

Sports

Tatyana shined in any sport she took part in; however, she loved racing the most.

Unfortunately, due to lack of money, the school was unable to allow her to join the track team, due

to the racing wheelchair she would need. Tatyana’s determination and ability to stand up for what she believed in, eventually allowed her to have the same opportunities as her classmates. This was supported by her parents, family, and friends. Tatyana was aware of the work that would be needed for her to have the same choices as her classmates. Her parents had talked to the principal of her high school, but nothing could be done. Tatyana with the help of her parents, went to the courts in the spring of 2006, a place where important decisions are made by judges. Once in the courtroom, the judge asked the school principal if they were allowing Tatyana to race. He answered yes, but this was not entirely true. He explained that they would only allow her to go around the track by herself, with no one there to support her. The school principal told the judge that because she was different, she should be separated from everyone else. After five hours of being questioned by the judge, the decision was made that the school principal was treating Tatyana unfairly due to her (dis)Ability. This is called discrimination. After the judge’s decision was made, the school was mandated to allow Tatyana to race, but she was not allowed to compete against other students, Information for this written work was taken was Fastest woman on Earth: The story of Tatyana McFadden by Francesca Cavallo and Ya Sama! Moments from My Life by Tatyana McFadden and Tom Walker and compiled into the above YouTube Video link . Full references for these sources can be found in reference section which meant she would not be able to receive any medals for her hard work. This led Tatyana and her family to keep fighting for equal ¹treatment when it came to sports events. After a long two- year fight in the courts, the Maryland Fitness and Athletics Equity for Students with (d don’t ignore him. Act was passed in the spring of 2008. This Act allowed all students with (dis)Abilities the same opportunities to compete in sports and receive medals for their hard work. Tatyana finally felt like she was just like everyone else.

I thought this was an important addition to the original children’s story, as it shows that even though Tatyana was a young high school student, she was passionate about what she believed in. This led her to become an ambassador for PWD in the fight for equal access and participation in sporting events. Through this fight, she was able to dismantle ableist beliefs that PWD are not capable of participating or competing in sports. Tatyana was able to use her personal experiences to help educate the judges, lawyers, government, and school officials about sports and (dis)Ability.

The term it takes a village, greatly applies to Tatyana’s journey through the court system because without the help of local groups, civil rights organizations and lawyers who were encouraged by the court case the outcome may have looked a lot different. The passage of this Act gave PWD a new level of freedom to relate to their peers as well as develop their own individuality.

A phenomenological exploration of freedom means that freedom is simultaneously a release from bodily and societal limitations (Brymer & Schweitzer, 2013). This means that the societal assumptions that some may hold about PWD being incompetent and unskilled when partaking in sporting activities is inaccurate (Brymer & Schweitzer, 2013). By having stories such as Tatyana’s, we can see that real life examples of resisting ableism and invisibility regardless of age or perceived ability is possible. Like Tatyana, I also felt freedom in doing things my own way when I was on the ski hill with my ski instructor, using a bi ski. A bi ski is a seat with skis attached and handles for the ski instructor to hold and control. Along with the ski instructor, I was able to control the skis by shifting my body weight from side to side. I would hold my arms out like an airplane, and depending on which way I leaned, it would move in that direction. I loved going fast at a blinding speed. In fact, the faster the better! I particularly appreciated the emotion-motion dynamic as my emotion affected my bodily movements, and I had the felt experience of being moved and moving (Sheets-Johnstone, 2018). This actively demonstrates that from a phenomenological perspective, emotions are a whole-body experience. They move through the body at the same time, they move us to move. In my experience, when I felt the cold wind hit my face and activate a burning sensation on my skin, I would be filled with exhilaration and my face would light up, both figuratively and literally (Sheets-Johnstone, 2018). I would laugh all the way down the ski hill and my feelings of freedom were endless; I knew that as I shifted from side to side and my ski instructor controlled both my skis and his own that we would be able to move in tandem with that exhilarating speed I wanted. The fighting against the elements made me want that exhilaration more. The more I smiled or laughed, the easier the movements would become for my body, to shift the skis direction. I indeed felt like the fastest woman on Earth!

Participants had many takeaway suggestions that came through in the interviews. The overall message was Hear Us, See Us and Talk to Us! My participants advocate for no labels, but rather to be seen as just human beings. The reluctance to identify as a PWD may arguably be seen as a missed opportunity to reduce disparities and feel connected to a larger (dis)Ability community. However, from these interviews I have learned that the more we normalize (dis)Ability the less it becomes about disparity and the more it is about (dis)Ability as a strength (Andrews et al., 2022). An example of this would be during my interview with Tabetha, she identified herself as differently abled, not a person with (dis)Abilities. It is noteworthy to mention that differently abled is not an identity or label for her, but a sense of pride, a way of life and a way of being in the world. This contrasts with euphemisms such as ‘special needs ’it is an alternative way of seeing (dis)Ability that is meant to be less stereotypical.

Ableist beliefs can be rooted in misunderstanding/misleading information that is not based on evidence and is at times blatantly untrue (Omiegbe & Ezehi, 2023). Therefore, whether we are discussing identity preferences or how an individual would like to be seen or treated, society should be open to not adopting any specific ideology when it comes to interacting with any human being, including those with (dis)Abilities (Omiegbe & Ezehi, 2023). Inclusion and acceptance need to start with people in leadership roles whether they have a (dis)Ability or not. When this happens, it may reframe natural assumptions that PWD are not change makers and be a reminder that ableism can start and end with you (society).

This art piece was originally inspired by another a piece created in 2014 with the assistance of a local artist by the name of Erin. I would like to share my feelings through art.

This is a copy of the original art piece

Later in 2021 I wrote the poem ‘Finding Home’ during my independent study for an assignment for my thesis supervisor Dr. Judy MacDonald. I was exploring my experience as a (dis)Abled woman who is also a wheelchair user and the connection these experiences have to my own feelings of hyper-visibility, invisibility, and ableism. I felt that the original art piece did not fully represent me, as it did not incorporate my wheelchair, which is a big part of my life. So, I commissioned a new art piece with the help of Indigenous artist Gina Mcintee. Through collaboration she was able to create this beautiful piece that fully incorporates all aspects of my life world. She was my ‘creative enabler’, meaning that Gina was able to build and focus on my artistic vision while playing an active artistic role within the create work. This contributes to the esthetics of the piece and draws attention to and celebrates my authenticity.

The artist described the art piece as follows:

The black background supports the feeling of the depth of darkness 6000 feet below ocean level. The turquoise circle is a mirror reflection at the same level however this image mirrors the beauty and light that shines at the bottom of Guaymas Basin (G. Mcintee, personal communication, December 20, 2022). The stairs are the obstacles you shared with me, and shades of grey were used to paint the people as this shows neither light nor dark. I painted their backs out to show the need for proper education within all ages. Your family, friends and supports are all around you…still in grey. Cassie is in grey, however her scarf is a symbol of connecting with her voice to share the light of what is home…Your iPad & cell (painted green) is by your arm as these tools help to express your thoughts & feelings. The colorful section although a night scene shows Grandmother Moon as “light with the darkness.” The calm water reflects emotional peace, the footprints are you walking in that space with an open mind. The Libra stars are to the right and up, the Aries is top left & Libra is lower left. Your right knee down shows is in color as a reminder you can walk to that place (G. Mcintee, personal communication, December 20, 2022).

I was not exclusively looking for an indigenous artist or art piece. The artist and I connected on a personal level, and she gave me full artistic license on how I wanted the piece to look and worked with me till I was completely happy with the finished piece. Although I agree and love the artists interpretation, I see the art piece slightly different. The stairs are depicted with people’s backs facing out, which represents ableism and needing education. However, I feel that these individuals symbolize people, institutions, policies (written action), practices (doing action), and the built environment. At times in my life, these things represent a sense of community, however, they can simultaneously represent a sense of alienation. Placelessness is a phenomenological term that refers to creating desirable environments for people to live and work. This encompasses all aspects of daily life including such things as grocery shopping, going out to a restaurant, going to work, going to school, going to the doctor and any other social or essential activities (Cilliers et al., 2015). It is imperative to create spaces that celebrate and recognize differences and allow for the me-we relationship. Being in the world can be experienced both individually and together (Loidolt, 2015).

When looking at the stairs in my art piece, they could represent the institutions that are supposed to operate under the premise of helping PWD also create challenges for those with more complex needs. For example, in my personal experience a set of stairs can create many more challenges than just access to a building. Once I am inside, I have asked ‘do I have access to a PSW to assist with eating, and bathroom breaks’ This is opposed to someone who is able to self-transferred and may not require the same aids. My iPad and cell phone represented in the art piece only show a portion of what I require to express my thoughts through written work. These tools act as an affordance which aids in my ability to interact with my environment though tasks of everydayness (Suetzl, 2022). This refers to how I operate within my world, how I navigate through the world, these tools are used due to the technological nature of today’s society. These tools help to reduce invisibility and dismantle ableism as I can communicate in ways in addition to verbal communication and I recognize that written language can sometimes resonate louder than the spoken word.

Artistic practices may be used to represent (dis)Abled body and minds (Bridger, 2021).

Even though I represent these things as distinct entities, I recognize that the (dis)Abled body and mind are all interconnected, just as the able body is. (dis)Ability is often represented through a non (dis)Abled lens that positions (dis)Abled artists as inspirational. However, these artists want to use art as a way of educating and drawing attention to the ways that they want their (dis)Ability to be represented and seen (Bridger, 2021). It is important to create ally led art, as this focuses on creating forms of access that recognize and support the skills of (dis)Abled artists without undermining their capabilities (Hadley, 2020). In order to suspend natural attitudes and assumptions about (dis)Ability and the art that results from those lived experiences, we must adopt practices that support artist ally relationships of empowerment (Hadley, 2020). To date, the (dis)Ability art sector has not accepted any theory or terminology to describe this dynamic, and until this is done, it may be difficult for the artist to be taken seriously (Hadley, 2020). To begin to form an ally-based perspective, around (dis)Ability art, a phenomenological approach would suggest that we respect the uniqueness of all human beings regardless of ability, while also understanding that we must not diminish the commonalities between us (Yar, 2000). When this is done, we create a sense of mutual understanding and help to dismantle ableist practices that may create feelings of hyper-visibility and invisibility. In an effort to respect uniqueness, individuals are invited to nurture their ability to become compassionate witnesses, by becoming comfortable with the uncomfortable, when bearing witness to the injustices of others (Gupta, 2018). The ability to bear witness is challenged by cultures of silence which evade the ability to see individuals and communities as equally deserving members of society. It is my hope that individuals bear compassionate witness to parts of my lived experiences, while understanding possible shared experiences (Gupta, 2018). When we engage with visual platforms such as art, we may learn varying perspectives of lived experiences that represent diverse communities and individuals. This may help to cultivate positive interactions between the (dis)Abled artist and the viewing audience. Through art the artist has the ability to express, explore and communicate various emotions and experiences that may evoke different reactions. They can tell a story or simply create an opportunity for individual interpretation based on a person’s lived experience. Even though I did not physically create my art piece, my personal vision was to help reduce hyper-visibility, invisibility, and ableism within (dis)Abled communities. By elevating my voice and creating new imaginings of what may be possible, (dis)Abled individuals and their allies can help to foster awareness of the hopes, dreams, abilities, challenges, and potential of current and future (dis)Abled communities.

I felt privileged to have individuals share their stories with me as I also could relate to what was being shared. I feel that it was very telling that there was not a specific set of recommendations from the participants. (dis)Ability does not have to be complicated and including the (dis)Ability community is a pathway to a more affective dialog. This type of approach to (dis)Ability awareness really empathizes the strengths and expertise of the community. It can also simultaneously create less confusion in universal design concepts and policy making for the full participation of PWD. Unfortunately, things that have never been questioned or challenged take time to implement and I heard the frustration in my participants voices regarding this. This frustration was a large motivator for me to do an E-Portfolio thesis as I wanted to display (dis)Ability in practical and tangible ways that I believe cannot be fully explored through written word alone. By using various mediums, I believe that I successfully explored the universal but unique needs of all human beings regarding belonging, acceptance, and the desire to choose.