By Madeline Dempsey
** This paper was my honours thesis for my undergraduate degree, focusing on autism and queerness, exploring the intersection between the two. This paper was finished in the summer of 2022, and to be frank it is not something I find myself incredibly proud of. However, after not allowing anyone to read it for years, I figured it was time for this paper to see the light of day.
Cripping and Queering; Unpacking the Shame of Autism and Learning from Queer Activism
Chapter One: An Introduction to Autism
Autism, or autism spectrum disorder (ASD), involves an extremely broad range of characteristics, from hypersensitivity (or hyposensitivity), to struggling with social cues, to varying levels of verbality. Autism also affects the way that a person perceives and processes information. Autism looks different from person to person, which is why it has become largely understood as a spectrum disorder, with each person’s expression being unique to them. This makes diagnosing autism a difficult thing to do, resulting in many autistics getting diagnosed as adults, or never getting diagnosed at all. It has been especially difficult for young girls to get an autism diagnosis, as much of the research on the disorder has been done on young boys, so little is known about how the disorder manifests in girls, and diagnostic materials are built around expressions specific to boys. Women are also less likely to be diagnosed as children as the socialization processes for young girls is harsher, often hiding the early symptoms of autism. This is what the first adult autism specialist I ever spoke to explained to me on a five-minute phone call, where she formally accepted my referral to be “screened” for autism. This put me on the four-year waiting list to see a doctor who could diagnose me. It has been two years since that phone call, and three since I first started researching autism in adult women and realizing the likelihood of my own neurodivergence. Since this time, I have come to understand ASD in a very intimate light. Though I still lack a formal medical diagnosis, I know that I am autistic, and other members of the autistic community have validated that for me repeatedly. Though other autistics have been supportive of my self-diagnostic process, neurotypicals have not. Members of my own family rejected the idea that there was anything “wrong” with me, stressing the fact that I have always been outgoing and social, and that I’ve always been academically high achieving. What my family did not know, what many folks do not know, is that in many cases, this is exactly what autism looks like.
My personal relationship to autism is what propelled this research. It started as an attempt to better understand more about the autism spectrum, especially the experiences of adult women getting diagnoses in their twenties. That eventually led to my understanding of myself as autistic, and my research continued as an attempt to validate my experiences and find coping mechanisms and support for autistics. This personal research coincided with my academic interest in disability as a field of study. Prior to my interest in disability, I had invested deeply into queer theory, coinciding with my understanding of my queerness. I started slowly coming out, to myself and to my closest friends when I was about 19. I was met with nothing but love and support by the people who mattered the most to me. That did not mean that I was not afraid to come out, or that the internalized shame that I felt about my sexuality my whole life disappeared, but there was an added sense of security knowing the people around me supported me. Over the last twenty years, there has been overwhelming progress that had been made in queer theory. As a 20-year-old queer woman, seeing that the world I lived in was becoming increasingly accepting of queer folk made me excited for my future. I was shocked that less than a year later, when I started talking to the people close to me about autism, sharing that I thought I was possibly autistic, I was not met with the same support. Comments like “Maddie, you are not autistic, we would have noticed,” or, “I really don’t want you to think that you are disabled, like there are things you can’t do.” These comments manifested in my refusal to accept my identity, thus stigmatizing disability further, and deepening my shame and embarrassment. It was clear to me that those close to me had a deeply flawed understanding of autism; they thought that being autistic was an inherently bad thing and a diagnosis would be an added burden in my life. Slowly, through knowing me and hearing my experiences, the people I love have come to unlearn the stigma around autism and understand that I am not held back by my disability, but that I am actually empowered by it.
My existence as an autistic + queer woman, is not exactly a unique one. In fact, the number of autistic folks who self-identify as queer is notably higher than neurotypical folks, with reports claiming that as many as 35% of those who self-report as autistic are also LGBTQ+ (Hall et al. 2020). The huge overlap between the autistic community and the queer community has been an integral part of how I came to understand myself and unlearn the shame that I had felt for so long. In realizing that I was not living alone at the intersection of queerness and autism, I found that there is power and strength and beauty in both of those things, and not in overcoming them but embracing them. This intersection of queerness and autism is a particularly interesting field of study as both operate as “invisible” forms of marginalization, meaning that you cannot know if someone is either autistic or queer unless they decidedly disclose it. This creates a deeply personal relationship between an individual and their identity, as they become in-control of who knows about it, and every disclosure creates an opportunity for further stigmatization or further empowerment. This deepens the fear of disclosure that is common among both neurodivergent and queer folx, further contributing to the shame and stigma that comes with both disability and queerness.
In recent years, there has been incredible growth surrounding the LGBTQ2S+ community in both public and self-acceptance, with the queer community leading the charge towards their own liberation. Queerness has gone from something that was understood as inherently wrong, to a rather widely accepted form of existence in the world. Sexual and gender minorities have spent decades advocating for themselves and creating spaces where they are encouraged to be their true selves. Queer people have created this kind of support and acceptance for themselves by taking ownership of their identities proudly, viewing their queerness as an essential part of themselves. This reclamation of identity is where the power in the queer community lies. By refusing to accept the narrative that society has placed on LGBTQ2S+ folks, the community has worked to undo the portrait of queer folks as socially deviant, and instead render a narrative centered around pride. This queer liberation movement was not easy, and it still is not over, but undeniable progress has been made to protect the rights of queer folx.
Autism is often pathologized and seen as an impairment to social behaviour that must be cured or treated for an individual to be able to function “normally” within society. Often, even those with the best intentions look at autism as something that needs to be “overcome” and believe that autistic people succeed in spite of their autism, but never because of it. This paper intends to look at and understand autism as not only a valid form of existence in the world, but an immensely valuable one. The primary question I hope to answer is, how can we undo the social stigma and internalized shame around autism, while looking at the progress that the queer community has made and translate those same principles to neurodivergence. I believe that by using the logic of pride and reclamation, and emphasizing the inherent value of difference, the neurodivergent community can champion its own progress, and clearly demonstrate the ways in which we provide meaningful contributions to the whole of society.
I will be utilizing both queer and crip theories to create an understanding of the social othering process that comes with both experiences of queerness and autism. Within this analytical framework, I will look at the more widespread knowledge and discussion related to queerness, comparing it to neurodivergence and disability as a whole, which tends to be less pertinent in discussions of equity. I intend to build upon the existing work of other scholars, discuss my own lived experience of being a self-diagnosed autistic, and investigate social media discussions of autism, particularly from those who are not autistic and view it strictly as a burden to individuals and families. This is going to include research into the Newgenics movement in both academia, medicine, and in popular culture. I intend to use my own experience as a case study, as well as Autism Speaks, which has been a controversial organization in the disability community, as it tends to focus advocacy related to autism on the experiences of non-autistic people and ignore the actual needs of the autistic community. I plan to engage in theoretical analyses of existing literature related to autism and queerness, focusing on the pervasion of social stigma amongst autistics, and the overcoming of social stigma within the queer community.
Conceptual Definitions
Many of the terms used throughout this paper are contestable or are used only within the context of disability and neurodivergence. In this section I am going to introduce working definitions for these terms and concepts for the sake of clarity and comprehension throughout the paper. Knowing that these terms are contestable, I would like to be entirely clear that these are the definitions I will be using throughout this paper.
Queer is typically understood as an umbrella term for members of the LGBTQIA2S+ community. For the purpose of this paper, it will refer to someone who is not straight and/or cisgender. For a long time, the word was weaponized against LGBT+ folks but has since been reclaimed by the community. This resembles the history of the word “crip” to refer to disabled folks, which is now often used as a term of empowerment. Both crip and queer have become verbs to their respective communities, with “queering” referring to analysis through a queer lens, and “cripping” meaning analysis through a disability lens. The processes of queering and cripping resemble one another, in that they base their understanding of the world in the lived experience of being queer and/or disabled.
‘Social othering’ is the process of separating and distancing oneself from people who are different, often as a tactic to appear normal. Social othering often occurs on an individual level, in how people interact with one another and with whom people choose to associate with, but it also happens at a systemic level. Systemic social othering occurs when a system is built with a majority group in mind, meaning minority groups are often not accommodated or represented and are therefore unable to access that space, or require specific accommodations. This kind of othering is far more dangerous, as it becomes inherent oppression and exclusion, which causes irreparable damage.
‘Eugenics’ was the popular and widespread movement of forced sterilization of people with specific hereditary traits as an attempt to “breed out” disease and disability, as well as other ‘non-desirable’ traits. The practice was extremely common around the world up until and during World War II, when the Nazi’s adopted eugenic policies, and practices of eugenics became widely associated with Nazism. Legal practices of eugenics persisted for a long time after that though, including in Alberta where the Alberta Eugenic Board continued to actively sterilize disabled folks until 1972 (Eugenics Archive). Though Eugenics has since been criminalized, it has not actually stopped. The way in which eugenics is practiced has been transformed, with the focus shifting from sterilization of disabled people, to screening fetuses for potential disabilities before birth and using this as grounds for termination of pregnancy. The termination of pregnancies due to potential disability is often referred to as “newgenics” as it upholds the historical values of eugenics while taking a new form reliant on new science
‘Neurodivergent’ is an umbrella term referring to people with disabilities that affect how they think and learn. These disabilities include, but are not limited to, autism, ADHD, Dyslexia, OCD, Tourette’s. The term neurodivergent is often used to describe the fact that people with these disabilities have brains that function differently than a “normal” person. Neurotypical refers to those who do not have neurological disabilities, or those who are not neurodivergent. Typically, we assume that people are neurotypical unless they have clear, stereotypical signs of neurodivergence, but of course neurological functioning cannot be easily determined.
Autism, also known as autism spectrum disorder (ASD), involves an extremely broad range of characteristics, from hypersensitivity of senses, to lacking an understanding of social cues, to varying levels of verbality. Autism looks different from person to person, based on the specific characteristics that a person expresses. Often, when describing autistic folks, medical professionals and neurotypical folks use function labels (high-functioning and low-functioning) to differentiate between symptoms, with the low-functioning label being used almost exclusively to describe non-verbal autistics. For this reason, the autistic community has largely rejected these labels, instead describing experiences of autism based on the symptoms that a person expresses instead of applying function labels.
‘Passing’ is a term that is used among many marginalized groups, meaning that they often are assumed to be part of the “normal” group, such as ‘white-passing’, ‘straight-passing’, trans people passing as the gender they identify with, and in this case neurotypical passing, where people who are neurodivergent are assumed to be neurotypical. This assumption to be neurotypical is due to compulsory able bodiedness, which is the assumption that all people are – or should attempt to be – non-disabled. Even disabled folks must attempt to function as similarly to able-bodied as possible in order to fit in. This, again, demonstrates the relationship between queer and disability theories, as the term comes from queer theories of compulsory heterosexuality, which is the assumption that all people are heterosexual and that those who are not are abnormal. Both of these systems work to perpetuate social norms related to sexuality and ability. Related to this is masking. Masking is the repression of urges by neurodivergent folks in order to appear neurotypical. We often mask in front of people we do now know or are not comfortable around, but it also contributes to the shame and stigma we internalize that our neurodivergent urges are wrong.
The hierarchy of disability is the idea that certain forms of disability experience more representation and accommodation than others. This hierarchy exists among all forms of disability, as well as in sub-categories of disabilities. We see this a lot in the autistic community with the application of function labels and the lack of representation afforded to “low functioning” and non-verbal autistics. This is often perpetuated in academic literature and research as those who are verbal are an easier demographic to reach and research.
“Bodymind” is a term referring to a person(s) being, often used by the disability community to resist the idea that the body and the mind are distinctly different and therefore experienced separately (Descartes). The term is especially important as it emphasizes the ways in which physical disability can manifest in the mind, and cognitive disability can manifest in the body. It encapsulates one’s entire personhood, instead of discussing either the body or the mind, understanding that the two are entirely interdependent. The term is also valuable as it includes the experiences of both cognitively and physically disabled people
Chapter Two: Disability Theory
The Medical Model
Disability has been a field of study for centuries. The earliest study of disability focused on disability not as a social form of existing, but instead as a medical mistake, a defect either assigned at birth or that one came into later in life. This understanding of disability, called the medical model of disability, see’s disability as an inherently harmful thing, and something that needs to be cured or overcome. This model believes that disability is “a personal, medical problem, requiring but an individualized medical solution; that people who have disabilities face no ‘group’ problem caused by society” (Areheart 2008). Essentially, the model does not see disabled folks as a group within society. It see’s disabled people as individuals, with disability as a personal problem that needs to be dealt with privately and medically. Yeoman discusses this in the context of stuttering, which they say is seen – through the medical lens of disability – as “an obstacle to a successful life” (Yeoman 2019), something that a person can succeed in spite of, but never because of.
The medical model has historically shaped how the general (read: nondisabled) public understands disability. That, however, does not mean that it is the most useful model when it comes to understanding disability. In fact, the model is extremely harmful, making the mistake of assuming that natural variation between humans is a disease, instead of looking at the ways that these variations can enrich our societies (Constantino 2018). The medical model of disability has been used in harmful ways outside of simply devaluing the disabled, it also helped create the basis for eugenics, and making people believe that eugenics was an ethical practice, as the model assumes that disabled lives are inherently worth less than the lives of the able-bodied/minded. This is why the disabled community has largely rejected the medical model, urging society to look at them as meaningful and valuable members of society. Yeoman brilliantly captured the reluctance of the disabled community to adopt the medical model when he said “Can we stop believing that the problem lives inside our bodies? Might the real problem lie in a society that, in its quest for order and efficiency, makes no accommodation for people who speak (or walk or think) differently? Might the solutions lie there too?” (Yeoman 2019). The rejection of the medical model of disability by the majority of disabled people has led to the creation of many additional, more critical models of disability.
Specifically referring to the medical model of disability in relation to autism, Nick Walker writes that “autism-related professional and institutional praxis is overwhelmingly dominated by a focus on “fixing” autistic persons – i.e. trying to make them non-autistic – at the expense of any significant focus on societal acceptance of autism, accommodation of autistic needs, removal of systemic barriers to access and inclusion, or supporting autistic persons in thriving as autistic persons” (Walker 2021). This is why it is extremely important that neurodivergent folks and the people around them resist the medical model and instead focus on how to support and empower autistic people to exist as they are. This idea of allowing disabled folks to exist as they are, and instead change how the world around them treats them and honours their needs is how we move away from the ableism perpetuated by the medical model, and start shifting towards a world where disability is not seen as a problem in need of a solution, but instead a natural variation amongst people.
The Social Model
The Social Model of disability was created by disabled people, with the fundamental belief of the model being that those with disability are not fundamentally unable to do things, but instead are being actively dis-abled by society and its norms. The social model has been central to the development of critical disability theory, and for a long time was widely understood and accepted as the best way to look at disability. Tom Shakespeare offers a comprehensive explanation of the social model in his chapter The Social Model of Disability, where he discusses the origins, strengths, and weaknesses of the model, while also discussing how critical disability theory has moved beyond the social model. The social model argues that impairment is naturally occurring and is “individual and private” (Shakespeare 2013) and is therefore left primarily up to medical professionals and individuals to accommodate and analyze. Disability, the social model states, is the social and structural systems in place that marginalize impaired people and actively dis-able them from everyday participation in society. The model often likens itself to feminism, with impairment correlating with sex, as biological, and disability correlating with gender, as socially constructed and deeply personal. Shakespeare explains that the social model is valuable in the way it unites disabled folks, with a very clear path for change, and has been relatively effective in creating said change.
The social model was extremely vital for the disabled community, as it placed disabled people and their own experiences of disability at the center of discourse. Where the social model fails, according to Shakespeare, is its essential ignorance to the way impairment affects the daily lives of disabled people, and its simplification of the experience of disability. Impairment and disability are deeply related, both playing an integral role in how we see the other, and also how we see ourselves. It is especially important to note that the social model of disability has failed the neurodivergent community in particular. As neurodivergence often lacks clear signs of impairment, the social model implies that experiencing neurodivergence is only social, which diminishes the experiences of burnout, over stimulation, hypersensitivity, and many other disabling aspects of autism.
Shakespeare is not alone in his critique of the model, in more recent years, it has been subject to more scrutiny in the way that it reduces the lived experiences of disability to simply being socially othering, when in reality, many disabled people are unable to do particular things because of their disability, be that physical or mental. By claiming that disability is solely social, it ignores the fact that impairment does actually prohibit people from completing certain tasks. This has led to the creation of many other models of disability. However, the social model of disability has remained an extremely important part of critical disability theory and continues to inspire new understandings of disability.
The Political-Relational Model
In the book Feminist, Queer, Crip Alison Kafer introduces the political-relational model of disability, which moves beyond the social model by suggesting that “both impairment and disability are social” (2013), as they both are shaped and changed by the world around them. Kafer, though acknowledges the overwhelming good the social model has done for the disability movement, argues that the social model fails many disabled people by denying how impairments themselves can be disabling, as symptoms like fatigue and chronic pain often make it difficult to participate normally in society, not because of society but because of the impairment itself.
Kafers model is extremely important as it demonstrates the intersections that exist within disability. This is one of the most influential works of disability theory, as it creates a framework for troubling the norms that we often assume to be true. This political-rational theory is where I hope to situate my research, utilizing the interdisciplinary approach that Kafer takes to understand disability. This model, when applied to autism and other forms of neurodivergence, is particularly insightful, raising the question of what is the impairment of neurodivergence?
There is research that clearly shows autism comes with physical manifestations, including chronic digestive issues such as IBD (Lee et al. 2018), and being over stimulated is absolutely disabling both physically and mentally, but it’s hard to equate these with the physical impairments of blindness or chronic pain. This is why the political-relational model is so important in the study of neurodivergence because it refuses to see disability and impairment as unrelated. Autistic impairment and disability are practically indistinguishable, but that does not mean we don’t experience both. Still, the ability of the political-relational model to look at disability as largely social, but also deeply personal, is absolutely vital to understanding autism. Also vital to the model, is that it rejects the idea that medical professionals are the experts when supporting the disabled, even when disability is primarily physical, instead encouraging disabled people themselves to be the champions of disability.
Building on Kafers understanding of the intersection of queerness and disability, Ellen Samuels discusses the process of coming out as queer, and the resemblance this has to the process of disclosing a disability in the article My Body, My Closet: Invisible Disability and the Limits of Coming out Discourse. This is especially true for those who are not visibly disabled, including neurodiverse folks, as they often have the ability to “pass” as neurotypical and able-bodied and minded. This means that their disability is extremely personal to them, a piece of knowledge that’s only known by those who they tell. This is an important place where disability and queerness intersect in a way that makes them distinct from other forms of marginalization, such as race and gender, which are much more difficult to hide, and therefore less personal. Samuels’ research here is extremely important in highlighting how queer theory can be used in disability research, while also highlighting the fear of rejection and shame that comes with the process of coming out as queer or disclosing a disability. This builds on the understanding of shame that is often associated with neurodivergence, and the process of disclosure is especially interesting when analysing how people who can pass as non-disabled often try to avoid making it known, as an attempt to mitigate the risk of being othered. This work also builds a lot on Judith Butler’s Gender Trouble in the way that it talks about performativity, how we perceive people in the way that they perform certain actions. It is these actions that lead to how we understand a person, as a man or a woman, or as disabled or able bodied, which then shapes how we interact with them moving forward.
Chapter Three: Autism and Neurodivergence
Disability and Community
There is a bond that forms with shared sources of marginalization. An understanding that does not need to be spoken, but just exists between people. This bond makes advocacy a little easier, knowing that there are people out there who feel the same, whose needs are the same (or similar) and aren’t being heard. This is how a community is built. It’s more than simply caring about the same cause, but a shared need to enact change, especially when the changes affect a person’s identity and rights. Disability became a source of community in the way all marginalized groups do; disabled folks were ignored and disenfranchised and took it upon themselves to change it.
Generally, the disabled community has done a lot of work in advocating for their own inclusion in society, often manifesting into public protest. Famously, disabled folks in California in the 1960s took to the streets, smashing up curbs using sledgehammers, and built ramps in their place (Leeper 2018). This attempt to make the world more accessible, despite the fact that it was done in an act of protest, ended up being good not just for the physically disabled, but for mothers with strollers, cyclists, the elderly, etc. Curb cuts have since become the norm, being an essential feature at almost every crosswalk, but the history of resistance is easily forgotten, and credit to disability activism is washed away. Still, disability activism and the fight for inclusion in society continues in many forms. Inclusion does not just exist in a single form; it looks different for different people and for different types of disability. This has led to sub-communities of the greater disabled community forming in order to advocate for their own specific needs efficiently and effectively. The deaf community has been a prominent leader in this regard, being unafraid to stand up and demand they be treated fairly, and that hearing people stop speaking on their behalf. Many deaf people have spoken openly about their dislike for scientific research to “cure” deafness and the harm that this does on the deaf community, as their sense of community has been built on the shared experience of deafness. In this way, the deaf community has inspired many other sub-communities of disability to feel pride and become empowered by their disability, instead of limited by it. The broader disabled community has worked for years to champion pride movements, similar to the LGBTQ2SIA+ pride movement, celebrating not just that they exist, but that they have been able to resist years of oppression and attempts to erase their identity. This is an attempt to move away from seeing disability as something tragic and instead as something powerful, a source of knowledge.
The Autistic Community
Traditionally, autism advocacy has happened at the level of families, specifically mothers and caretakers of autistic people advocating on behalf of their autistic loved ones. This has been problematic for many reasons, but especially because it focuses on supporting the families of autistics, and frames autism primarily as a burden on the people close to it. This form of advocacy not only further stigmatizes autism, but it also fails to address the needs of autistics and ignores what autistic people have to say, prioritizing able bodyminds over disabled ones. Perpetuating the stigma around autism, and calling it advocacy, comes back to individual models of disability – like the medical model – that focus on cure and charity instead of empowerment, or actual tangible change in the lives of disabled people. It refuses the right for autistic folks to exist in the world as they are, and instead forces them to conform to neurotypical norms.
In recent years, autistics have worked to reshape the narratives surrounding their disability, framing it not as a burden or disadvantage, but as inherently valuable, made more difficult by the societal pressure to conform to neurotypical behaviours. Social media has been a central part of this advocacy, as it has allowed autistics to connect globally, talking about their shared experiences. It has become hugely popular for autistic people to create social media accounts detailing their experiences of autism and the barriers they face every day. Though the focus is not always the barriers or disabling parts of autism, but also on the empowering parts. On the value that disability can actually contribute to a person’s life, and the community that it comes with. Another large part of the online autistic community has been the growing trend of the use of the hashtag #actuallyautistic. This is a subtle call out of the fact that many of us have spent the overwhelming majority of our lives hearing about autism and what autistics need from non-disabled, neurotypical people. The use of the #actuallyautistic hashtag makes a concerted effort to centralize the lived experiences of autistic people when it comes to disability advocacy. My original exposure to the hashtag came with lots of anxiety; as a self-diagnosed autistic I thought that perhaps this was an attempt to differentiate between those who have been medically diagnosed with autism, and those of us like myself who haven’t been able to access medical support for their disability. This could not be further from the reality. The autistic community has been overwhelmingly supportive and welcoming of all autistic people, regardless of how they came to understand themselves as autistic. The attempt to focus on those who are actually autistic means centering the voices of disabled people instead of centering the voices of those who view disabled people as a burden or a chore.
For decades, the public perception of autism has been based on the experiences of non-autistic people, and often their understanding of autism as a burden. Public perception has also been largely based on stereotypes of what autism is – typically this means that people perceive autism as in young kids, specifically boys, who are non-verbal and have limited capacity for social interactions. This can be what autism looks like, but as someone who came to a diagnosis as a young adult woman, this understanding of autism was really damaging to me. Through finding the autistic community working to overcome shame and stigma, and instead understanding disability as a place of power, I was able to find peace with my own autism, understanding that the problem exists not within me, but within society.
Popular Depictions of Disability
I mentioned earlier the desire for disabled people to move away from being seen as objects of pity or tragedy, but this has too often gone too far the other way, painting all disabled people as inspirational for merely existing. In their Ted Talk, Stella Young talks about being approached to be nominated for a community achievement award at the age of 15, having not really achieved anything at all aside from existing as a disabled person (Young 2014). This is an extremely common experience for disabled people, often being made out to be hero’s for “overcoming the hardship” of being alive as a disabled person. Being disabled in and of itself is not noble. Existing in a disabled body is not something that deserves to be praised or rewarded. We had no other option than to exist in a world that was not made for us. Moreover, these narratives paint disabled people as succeeding (typically in a very capitalistic sense) in spite of their disabilities and never because of them. This continues to paint disability as a tragedy that happens to someone, instead of as a source of knowledge.
We see these kinds of celebrations of disabled people all the time, and many disabled people actually subscribe to these beliefs themselves, painting themselves as ‘different’ than other disabled people as they were able to ‘overcome’ their disability. The autistic community in particular has a dark history in division into categories of superiority and inferiority. We often hear autistics hold tightly to the diagnosis of Asperger’s, which is an outdated term referring to autism with relatively low support needs, and high intelligence quotients. The term dates back to Nazi Germany and Hans Asperger, when those diagnosed with Asperger’s were kept alive due to their capitalistic potential, and autistics with higher support needs were either killed or sterilized. Asperger’s is no longer a diagnosis in the DSM-5, and many autistics and doctors reject the term due to its eugenic roots. (Falk 2020), (Czech 2018). However, the separation of autistics into categories continues. Today, function labels are often used in the diagnostic process to differentiate the “severity” of one’s autism. These labels are based heavily on capitalistic productive potential. Those who are non-verbal are more likely to be labelled as “low-functioning” because of the way that society denies the value of non-verbal communication. Those of us who are able to make it through most of our lives without a diagnosis are often labelled as high functioning. That really just means we have been able to mask well, that we know how to perform able mindedness so that we can get through the day. It’s exhausting, and the label of high functioning often diminishes the reality of our struggle, and results in people not believing us or accommodating our access needs.
There are many disabled people in the public who are often used as “inspiration porn”, an attempt to inspire the able bodied to live their lives to the fullest to honour those of us (the disabled) who are not able to. One example that comes to mind is the story of Jerika Bolen. Bolen had Type 2 Spinal Muscular Atrophy, limiting motion to just her head and hands, causing chronic pain. She decided to end treatment, knowing that this would lead to her death, dying at only 14 years old. The decision was extremely controversial, with many disability justice advocates worried about the role that ableism and a lack of crip community played in the decision. Still, Jerika’s decision never wavered, and her mother Jen Bolen stood by her the entire time. (Collar 2016) Towards the end of her life, Jerika’s community in Appleton, Wisconsin, threw her a prom. At the event Appleton’s Police Chief explained that Jerika “makes you appreciate what you have. She makes you think about using your time wisely” (Kafai 2021). The disabled community was outraged by this response, as those in her life were using Jerika’s life and tragic death as a way to reflect only on themselves. Seeing disabled people who chose to die instead of continuing treatment should not be a source of inspiration, it should be a source of outrage about how disabled people are treated, and how the medical industrial complex does not serve us. We are not here to remind you how good you have it. If you see how hard we have to work to live every single day, help us. Help us dismantle the ableism that is so deeply ingrained in our society, instead of continuing to paint us as tragedies. Patronizing forms of sympathy provide no tangible benefits.
Autism in particular tends to be portrayed in two – opposite but equally damaging – ways. We are either seen as remarkably intelligent, think Sheldon from the Big Bang Theory, Elon Musk, Greta Thunberg types. People who are not just existing similarly to neurotypicals but going beyond what neurotypicals are achieving. Or we are represented as tragic burdens to our families, unable to function without extreme support from neurotypicals. This kind of representation is often used by autistic charities and in the medical model of disability. It is used to center people around disability, but not the disabled person themselves.
Chapter Four: Queering and Cripping
As mentioned in the first chapter, this paper is rooted in the understanding that queer and crip identities are deeply, intricately entangled with one another, especially for those of us living in that intersection. It is extremely important that we understand disability does not exist in a vacuum, just as other forms of oppression; it interacts with and builds on other forms of oppression to take on a new and specific shape in order to impact everyone it touches. In the words of Audre Lorde, “there is no such things as a single-issue struggle because we do not live single-issue lives” (1982), meaning we must unpack our own experiences and oppressions to understand how they interact with one another in shaping our unique experiences of the world. This is why the acts of cripping and queering are such vital parts of undoing the intersecting oppressions that compulsory able bodied & mindedness and compulsory heterosexuality (along with a myriad of other oppressions that exist outside the realm of this paper) create. It’s also important to understand why there is this heavy overlap between autism and queerness. One recent report claims that that about 5 percent of cisgender people are autistic, where about 24 percent of gender diverse people are (Warrier et al. 2020), and another study claims that that as many as 35% of those who self-report as autistic are also LGBTQ+ (Hall et al. 2020). This unveils that there is a clear and strong overlap between queer identities and autism. Why this strong correlation between queerness and autism exists is not a clear answer, though I predict it has something to do with the fact that gender and sexuality are socially constructed concepts, which autistics have a difficult time conforming to, and therefore resist them at higher rates than their neurotypical peers. Still, regardless of what the actual cause of the relationship between autism and queerness, they are intimately and elaborately tied to one another, and the resistance of one contributes to the resistance of the other, and vice versa.
In recent years, queering has become a lot more common place in public and private, as people feel safer taking the norms of heterosexuality and playing with them, turning them upside down, and creating relationship structures that are more fitting for their own lives. We see even heterosexual couples changing the form of their relationship in order to better fit their lives and own personal needs. The heterosexual nuclear family is no longer understood as the only viable family unit, and though it is still privileged in society relative to other family forms, others have become more accepted in mainstream society. Despite the fact that queering our relationships with others has become more mainstream, there are certainly still widely held beliefs about what relationships should look like, and these beliefs are rooted in white supremacist, hetero-patriarchal, cis-gendered, able bodied understandings of how people will and should behave. When we shift away from these beliefs and center disabled, queer, of colour experiences, we see that the socially constructed rules for relationships simply do not apply to most relationships, and the ways that people exist in relationship with one another are diverse, and this diversity allows these relationships to thrive. The normalization of queering everyday life has paved the way for other movements to take shape. Nick Walker explains how queer discourse has shifted and how this shift has laid the ground work for other movements to grow, explaining that “challenging oppressive discourses is an uphill battle at first, but I take heart when I look at how much the academic discourse on homosexuality has shifted during my own lifetime. We can do this” (2021). Walker’s hope born out of the progress in discourse related to homosexuality is essential in moving the disability justice movement forward. This work is exhausting and so deeply personal, that sometimes it just feels like too much, that our time and energy might be better used simply protecting ourselves. But the movement is about more than just us. When we crip everyday life, we change the way that others see and understand disability and create a safer world for crips everywhere. The progress that queer activists and academics have made is entirely invaluable for the disability justice movement, and for inspiring the idea that change is possible.
The act of cripping our everyday life is an important part of changing the way that disabled folks interact with the world around them. Cripping allows us to shift the way that our disabled bodyminds exist within society, it understands that our access needs are best explained by us, and that it is the responsibility of everyone to work to meet them. Cripping works towards privileging disabled knowledge and experience, acknowledging that at any point any person can become disabled, and will therefore rely on our knowledge and experiences, giving them inherent value not just to those in our community, but to everyone. Cripping challenges the “prevalent and largely unquestioned understanding of living with a disability is that it always produces a lower quality of life” (Garland-Thomson 2014), instead acknowledging and celebrating that life with disability can be filled with joy. Cripping takes many different forms, when it comes to autism and neurodivergence, cripping is about allowing your bodymind to resist the norms of neuronormativity. Walker calls this “neuroqueering” (2021), explaining the importance of “intentionally liberating oneself from the culturally ingrained and enforced performance of neuronormativity”. This encourages neurodivergent folks to allow their bodies to do what feels normal for them, regardless of how this is viewed socially. It allows us to stim, publicly and shamelessly, to avoid eye contact even when it’s deemed inappropriate, to eat the exact same meal every single day, to repeat sounds and noises senselessly, and to do these things as an act of resistance, but also just because it is what feels natural and authentic to who we are. This act of resisting the ableist norms and allowing disabled bodyminds the space and time they need is a hugely important part of disability justice; It’s how we move forward in creating a new system that works for and supports all bodyminds, instead of finding ways to “accommodate” crips in a world that was never built for them.
Both cripping and queering are forms of challenging societal assumptions about how we exist in the world, in relation to others and within our own bodies. These practices are essential for creating a world that supports – not just accommodates – all kinds of people from every kind of background. A particularly damaging assumption that must be challenged through practices of cripping and queering is the desexualisation of people with disabilities. Often, people with any kind of disability are assumed to be eternal children, incapable of making adult decisions or having adult desires. Of course, this is entirely untrue, and disabled people are entitled to the same autonomy over their bodies as anyone else. Sins Invalid, a “disability justice based performance project that incubates and celebrates artists with disabilities” (Sins Website) has worked to undo the idea that disabled folks are inherently non-sexual beings by creating a space that encourages disabled folks to own, claim, and perform their sexualities, acknowledging that “sex and desire can be anything that our bodyminds need” (Kafai 2021). The radical art-activism of Sins Invalid works to change the way that disabled people understand themselves, giving them a public platform to own their sexual expression in a way that is safe. Sins Invalid crips sexuality and queers’ disability, creating an environment that celebrates disabled bodyminds in all their queer glory. Paramount to the work of sins invalid is that it is made by queer disabled people of colour for queer disabled people of colour, utilizing Dean Spades understanding that rights do not trickle down they trickle up, and therefore we must start by empowering the most marginalized members of society (2013). Leah Lakshmi Piepzne-Samarasinha reflects on the impact of early trans activists at the 1969 Stonewall Riots and how they laid the earliest groundwork for what would become disability justice. Lakshmi Piepzne-Samarashina explains that “many Stonewall warriors live(d) CPTSD then from surviving constant transmisogynist violence, rape, abuse, and shunning. This is a disabled trans knowledge too” (2019), demonstrating that the history of queer resistance is the history of disabled resistance, and that in many cases cripping is queering and vice versa; they do not exist in vacuums separately from each other but instead are empowered and informed by one another.
Chapter Five: The Politics of Disclosure
Coming out
For queer folx, coming out is an extremely vulnerable moment. Telling people about your historically “deviant” sexuality or gender identity, knowing that we live in a world that is not always accepting of queer identities, can be scary. Conversely, it can also be really empowering; an act of owning one’s identity proudly, declaring who you are openly and honestly. Coming out is an inherently political act, as it is an act of resistance to the hetero-patriarchal structures that our world is built upon.
Homosexuality was deemed a psychiatric disorder by the American Psychiatric Association until 1973, and trans identities continue to be pathologized as “gender dysphoria” in the DSM-5 (Mann 2021), which only deepens the relationship between queerness and disability, as both have been pathologized and victims of cure ideologies. Queer rights have had to be vehemently protected and defended by activists across the world, and the fight for queer protections around the world are ongoing. This is what makes coming out both terrifying and thrilling. There is something powerful about claiming your identity while standing on the shoulders of decades of queer activists and scholars who have paved the way for you. Still, the risks that queer folx face are extremely prevalent today, especially for those of us existing in intersections of racism, ableism, homophobia, transphobia, patriarchy, and many other forms of marginalization. It involves serious risk management, and the repercussions can be intensely damaging.
Cis straight folks often understand coming out to be a singular event, a one-and-done type of thing. Queer folks know that this simply isn’t the case, that we are constantly deciding who to share, and more importantly who not to share, our identities with. Coming out the first time is exciting; it’s usually an important moment shared with close friends or family, a celebration of one’s own identity, even if it is scary. This excitement wears off eventually, once you have shared yourself with all the people you wanted to and move towards sharing with the people you have to. For me, this was my extended family. My sexuality was not something I really cared to tell them about, but it was something that I figured they at least should hear from me before I posted about it on social media. Coming out on social media was an entirely different kind of exciting. It felt the most political, and it was definitely one of the most vulnerable things I had ever shared this publicly. I prepared myself to be met with some sort of lack of kindness, but honestly, I was met with nothing but love and support. In fact, no one in my life was shocked; everyone kind of saw it coming. Since coming out online, it’s continued to be one long process of coming out to people in my day-to-day life. Every time I am in a new class with people I don’t know, every time I start a new job, every time I’m at a social event, it’s an odd balancing of trying to stay true to my queer self, and also being extremely insecure about being too queer, about making my queerness my entire identity. In each new scenario, I have to navigate all of this while also needing to ensure my own safety. It’s important to understand why someone may or may not come out in any particular situation. It’s a sort of risk management and mitigation, a way for a queer person to put on a shield and protect themselves.
Disability Disclosure
As mentioned in the second chapter, the perception of a person as disabled or non-disabled shapes how we interact with them. This makes autism a particularly interesting case as it is often very easy to perform able mindedness, especially for those of us who have been deemed “high-functioning” by the medical model. When those around you are not immediately aware of your disability, it becomes very easy to start trying to “pass” as non-disabled due to the pressures of compulsory able-bodied/mindedness. The assumptions that people make once they know someone is disabled are exhausting to try to fight, and it can feel easier to just avoid the conversation all together. When people do know that you are disabled, the changes in how they treat you feel immediate. You start feeling like you are being spoken to like a child, infantilized almost. Sometimes, disclosure is necessary to be able to advocate for oneself effectively, but that often comes at the cost of being taken seriously, which leaves disabled people in a situation where no matter what they do, their needs are not being met.
In my personal life, my autism has been something I have held close to me. I present as very neurotypical, which is why 20 years went by without a single person ever positing that I could potentially have any kind of disability. I couldn’t have been; I was outgoing, I had lots of friends in school, I was achieving my high academic goals and I played sports. My struggles were very real, but I was able to hide them well enough that no one ever had to know they existed. My autism did not cause an outright inconvenience to anyone other than me, so no one worried about it. When I started disclosing my disability, I knew that I was going to have to have a lot of uncomfortable conversations, but I didn’t realize how they never end. When I first started talking about my disability with people, I figured it would always be something I kept close to my chest, something to share with the people closest to me and no one else. This of course was rooted in shame, and fear that if people knew I was autistic it would shape how they saw me. This shame is something that I work through every day, as I disclose my disability all the time; It is simply too big of a part of me to try to keep hidden. Sometimes, disclosure feels terrifying and vulnerable, and other times it feels empowering and validating. The responses I get are usually the same – people telling me they never would have guessed or that it isn’t that obvious. While they are largely well-meaning, people have no understanding how harmful it is to me when they say these things. Sometimes people respond to my disclosure with a lot of grace and curiosity that I’m happy to satiate by answering their questions, and the conversation ends with them thanking me for being so open about it and I feel like I really did something good in helping educate someone. Sometimes a disclosure opens the door to longer on-going conversations about disability and neurodivergence. People will ask me about my thoughts on certain disability related issues or certain controversies. It’s nice that people see me as a source of knowledge, and it makes sense because autism and disability have become my field of study, but sometimes it does feel like other people avoid doing any real learning themselves and instead rely on me (as their disabled friend) to help them.
Shame and Stigma
With both disability and sexuality/gender identities, people tend to assume a degree of shame. This is not due to anything being inherently wrong with them, but because of the social stigma that is enforced on queer and disabled folks. Stigma is a powerful tool, used to “keep people from contributing the unique skills and perspectives that make them different but allow them to fill the blanks left by others” (Gates 2019). Not only does this stigma limit the ability for diverse bodyminds to coexist and cocreate, but it also keeps the marginalized from speaking out against their oppressors for fear of naming them. For those of us who are invisible minorities, exposing your otherness is a risk, one that is often not worth the potential damages. Keeping these identities not necessarily secret but surely not public is a safety measure, a form of risk management that minimizes potential harm. Enforcing shame on the marginalized is a tactic that is used to prop up existing structures that maintain the status quo, to ensure that current systems of privilege go unchallenged.
Applied behaviour analysis (ABA) is a form of therapy that is often used on autistic people in order to help them better conform to neurotypical norms. Essentially, ABA enforces the idea that neurodivergence is abnormal, and that it should be treated so autistics can perform more “normally”. This of course contributes to the deep shame that many autistics feel about their disability and perpetuates social stigma and cure ideology. It tells autistic people that our existence makes other people uncomfortable, and that it is our job to act in ways that are unnatural and uncomfortable for us to ensure the comfort of others. Autistic advocates have long pushed for therapies that address ableism and are rooted in the social model of disability as an attempt to help “the [autistic] client understand their own oppression, both external and internalized, as a primary cause of their suffering” (Walker 2019), instead of trying to frame their disability as the cause of their suffering. Disability, of course, can be the root cause of physical pain, but in many cases the greatest pain that disabled people feel is not a result of their own bodies, but instead the way society sees and treats disabled bodies. When we reframe the problem as not existing within our own bodies, we can start to unlearn the shame that has been enforced on disabled folks and come to not only accept, but celebrate our own bodyminds.
Chapter Six: Autism Doesn’t Always Speak, an analysis of the autism speaks organization
The pathologizing of autism or seeing it as something that must be overcome in order for
success to be achieved, is far too common in society. Unfortunately, this has become the dominant narrative for many parents of autistic children, who seek support for their autistic children but often end up adopting the values of the medical model of disability, especially as this is almost explicitly how autism is introduced to families. People are encouraged to find ways to “cope” with autism. Parents are encouraged to join support groups of parents of autistic children, where people share how much of a burden their autistic child is – with very little conversation about how society works to uphold this so-called burden on the parents. This leads to methods like Applied Behaviour Analysis (ABA) therapy, something that many autistics have spoken out against as traumatic and damaging, as it attempts to teach autistic children to perform able mindedness, instead of teaching them about how their brains function and how to best advocate for themselves. This forced masking of autistic behaviours is extremely damaging as it contributes to the shame that autistic feel about their natural impulses. It also often leads to parents becoming advocates for their children – typically in well intentioned ways – that are actually very often harmful for their children. This advocacy is often rooted in what parents learn at their support groups and autism charities run by (you guessed it) neurotypicals adopting the medical model of disability. Nick Walker explains this by arguing that “autism-related professional and institutional praxis is overwhelmingly dominated by a focus on “fixing” autistic persons – i.e. trying to make them non-autistic – at the expense of any significant focus on societal acceptance of autism, accommodation of autistic needs, removal of systemic barriers to access and inclusion, or supporting autistic persons in thriving as autistic persons” (Walker 2021). This work is done by a number of different institutions, including medical professionals, ABA therapists, and autism charities and organizations. Though there are a few of these organizations around, none have been as pervasive and controlling of public perceptions of autism as the organization Autism Speaks.
Autism Speaks is an international organization claiming to be “dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism, and their families” (Autism Speaks Website 2022). They also boast achievements such as: “helped lead the world’s largest genomic discovery about biology of autism” and “invested $234M in scientific grants, resulting in additional $1B public sourced funding focused on autism”. These are things that are currently on the Autism Speaks website, and all sound primarily positive. However, it is extremely important to analyze what exactly this means for autistic people. Discovering an “autism gene” seems to be an extremely odd goal for an organization that claims to help raise acceptance, as finding a specific gene (or anything that can be tested for during pregnancy) for a disability often leads to attempts to eliminate the disability. This attempt to eliminate genetically based illnesses is often referred to as newgenics in the world of Disability Justice. Newgenics utilizes prenatal screening and testing to selectively choose what kind of baby should be born, and what kind of existence is desirable. Regardless of whether or not this is the explicit goal of the organization, this is the ideology that they are promoting. Historically, Autism Speaks has promoted an even more damaging understanding of autism. In 2009, the organization launched an ad titled “I Am Autism” that suggested autism destroys families and “rob[s parents] of [their] children and dreams” (Luterman 2020), perpetuating many of the most damaging stereotypes about autism, and continuing to center non-autistic people as victims of autism, instead of centering autistic people as victims of ableism. Today, the organization claims clearly on their website that they are “not looking for a cure” but instead are trying to “improve the quality of life for people with autism” (Autism Speaks Canada), but their ongoing work with genomic research works to refute this claim.
The ideology that Autism Speaks and similar organizations promote is harmful in that it pathologizes and stigmatizes disability, seeing it as a burden to people that must be resolved, or at least made small enough that it does not make others uncomfortable. This resembles the practice, primarily done in the name of Christianity, of queer conversion therapy. Conversion therapy attempts to brainwash queer youth into believing that their queerness is dangerous and evil, and to repress their sexual urges, instead giving into heteronormativity. Young queer folks are sent to these conversion camps – often against their will – by their families in hopes of “curing” them of their queerness. In Canada, conversion therapies were federally banned in December of 2021 (Bill C-4) in a unanimous decision in both the Senate and House of Commons (Treisman 2021). This ban is the result of years of work and advocacy by 2SLGBTQ+ folks and is something that disabled folks should look to as an inspiration of what is possible when we resist normalization and medicalization. Ableism often uses the same logics of homophobia, reducing people to traits that are beyond their control and demonizing them for being “abnormal” despite the fact that they are the ones being failed by the complete lack of support and resources.
Chapter Seven: Self-diagnosis and self-discovery, my autistic story
As mentioned in the first chapter, I am a self-diagnosed autistic, currently waiting (on a four-year waiting list) to be formally assessed and diagnosed. My decision to accept a self-diagnosis was not really my own decision, or a decision at all. I listened to a podcast for a class talking about autism in women, how it’s common for women to go undiagnosed throughout childhood and how one specific woman experienced autism. This was an earth-shattering moment for me, as this woman explained her formative years in a way that I felt I deeply related to. For the first time, someone else articulated the way that I felt growing up. This was my first inclination that I may be autistic. That thought led to a whirlwind of research, reading, and engaging with autistic communities online. After many months of extensive research, a number of identity crises, and doing every adult autism test online that I could find, I began to feel very confident in the fact that I am autistic. I spoke to my doctor, who referred me to the only adult autism clinic in the city I live in after doing some preliminary tests that all scored in the high-risk range. About one month later, I got a call from that clinic, who asked me a few more screening questions, explained a little bit about adult autism in women, and agreed to accept my referral to the clinic. Then, she told me news that I did not expect to hear, that it was about a 48 month wait until I could be seen. This was about a year ago. Every couple of months I get a letter, reminding me that I am still on the waitlist, as if this is something that I could ever forget. All of this is to say that I am still awaiting a formal medical diagnosis, but that medical diagnoses are not very accessible, especially to adults. So, instead of waiting 4 years to be told something that I already know is true, I have decided to self-diagnose to better understand myself, and explain my identity to others. This is something that my autistic community has been more than supportive of. There are undoubtedly still some negatives with being self-diagnosed, one being that accommodation by institutions is extremely unlikely without a diagnosis. Many people – especially those outside the autistic community – struggle to understand the validity of self-diagnosis, often claiming that self-diagnosed autistics are “lying for the attention,” which is an incredibly damaging and harmful idea that absolutely should not be perpetuated.
The beginning of my coming out process was very different from my earliest disability disclosures. I remember coming out to my friends and family being an overwhelmingly positive experience, with very few exceptions. I was met with love, graciousness, and overwhelming acceptance. Some people said they would have been more surprised if I wasn’t queer, others said how proud of me they were, and eventually – though some people took longer than others – everyone came to accept my identity. Everyone in my life knew queer people and loved queer people, and many of my closest friends were queer, so no one really trivialized or tokenized me as “the queer one” in any group. I did not feel like I suddenly became the information source on all things LGBTQ2S+. The way people treat me when they find out that I’m queer doesn’t change, with the exception of other queer people who tend to feel safer and more comfortable when they find out I’m queer. This is not the same experience I had when I began disclosing my disability. The first person I told, aside from my best friend and roommate who talked me through my entire self-diagnosis process, was my mom. When I said I thought I could be autistic, the very first thing my mom said to me was, “no, you aren’t. Both your parents are teachers, it’s our job to notice these kinds of things in children. I promise you that you do not have autism.” I still remember those words so clearly. I had done enough research at this point that I was able to pretty clearly articulate why I felt the way that I did and all the reasons why she may not have noticed. There was a lot of work that happened behind the scenes before I was ready to share with my mother, and I was fully prepared for this kind of reaction. I knew that based on everything I knew about autism and how it is experienced by adult women to know that this was going to be the first of many explanations. I knew that I was never going to be believed, that I was going to have to come into this ready to prove that I was autistic.
The refusal of the possibility that I could possibly be autistic continued for months, to the point where I decided not to share it with anyone else for a long time. Eventually my mom told me that I should talk to my doctor about it, not because she believed me but because she was tired of trying to convince me. It was after my doctor’s appointment, where suspicions were not necessarily confirmed, but at least strongly validated, that I started to slowly tell the rest of my family, not that I was autistic but that I was awaiting a formal assessment. The same doubt and dismissal continued. My siblings were the only ones to validate what I was feeling, saying that it explained why I had such a difficult time communicating and expressing my emotions as a kid. Eventually, after a long discussion with my siblings and parents over dinner one night, I felt like maybe they were starting to come around. Later that night I got a text from my mom saying that she didn’t want me to think of myself as “disabled”. I remember looking at it over and over again, trying to decide the best way to respond, while also feeling so invalidated and exhausted. I sat with those feelings for a long time, thinking about how exactly I could explain why what she said was so hurtful, and how I could try to shift her understanding of disability. I re-read Shakespeare’s The Social Model of Disability, thinking maybe that would be a good resource for me to send to her. In the end, I never said anything about it.
It wasn’t until over a year on a waiting list to see a specialist that my mom told me “I think I’m on team autism now,” meaning that she finally believed me. She didn’t come to this on her own. This was a result of my months of calling her about a weird thing I’ve done my whole life that turns out to be related to autism, months of communicating my experiences and my needs. It was the result of my brother getting an ADHD diagnosis my parents never expected, which led to them doing some research into neurodivergence and realizing that they didn’t know as much as they thought they did. This was my first experience in disclosing my disability to anyone, and there have been both better and worse responses to disclosures since then. However, none of my disclosures ever go as well as when I come out to people. I very often get comments from people saying that they never would have guessed or that they could not tell I was autistic. Sometimes people say things like “you must be really high functioning” or “but you’re on the lower end of the spectrum, right?” as a way to diminish or minimize my disability. I used to always bite my tongue, instead of explaining to people what “the spectrum” actually looks like and informing people that functioning labels are actually quite outdated and damaging to people. It felt uncomfortable to educate people on these things, even though it is both my own lived experience and my area of study. It still feels uncomfortable, but the discomfort is worth knowing that maybe another disabled person will not have to explain it to them. As an autistic adult in a position with a heck of a lot of privilege, it is the least I can do for the community that welcomed and supported me so unequivocally.
Chapter Eight: Conclusion
With so much work needing to be continued in both queer activism and disability justice, both movements can learn a lot from each other. Generally, queer liberation movements have gained more momentum and created longer lasting systemic change than disability justice movements have so far. This should not be used to discourage disability activism, but instead to inspire hope in our ability to create change. Queer activism and community building has laid some vital groundwork in organizing and creating space within the existing systems. What must be done now is the creation of new systems, by the multiply marginalized for the multiply marginalized, to ensure that we are protected first. According to Dean Spade, rights trickle up, and when we ensure the rights of the most marginalized members of society, we can ensure that all members of society will have those same rights. This means disabled folx – along with queer folx, people of colour, gender minorities and other marginalized folx – have to work to configure a world that focuses on achieving equity and accessibility for all people. What exactly that looks like will change greatly as time progresses and our needs as people change, but undoubtedly the need for advocacy from the multiply marginalized will continue. Using the work of the many brilliant queer crips who have lived, worked, and died for their work, I believe that we can create a “crip-centric liberated zone” (Kafai 2021) that encompasses all of us.
I want to finish this paper by saying that I could never have done this without the work of crips before me – those who paved the way for talking about our bodyminds exactly as they exist. Writing this paper has been hard. I had to work tirelessly to honour myself and my autistic brain, as well as honour my work. Academia requires meeting rigorous deadlines and extreme productivity. I refused to allow myself to compromise the values of cripdom for this. I could not, in good conscience, write about the need to allow disabled bodyminds to exist exactly as they are, about making space and time to accommodate our many needs, in a way that does not honour this. So, this paper, originally to be due in April of 2022, is now coming to a wrap in August of 2022. After all, I’m running on crip time, which “bend[s] the clock to meet disabled bodies and needs” (Kafer 2013). I required this extra time to honour the work that I was doing, and to honour the work of other crips, and do our movement justice. I needed rest, and I fought against deeply rooted shame every time I explained to someone that I was taking extra time or negotiated an extension for a deadline. But “removing guilt and shame from rest is how we will move ourselves in wholeness and sustainability” (Kafai 2021), and if disabled folks want to create a world that is going to work for us, we should be doing everything we can to do it sustainably. This was very hard for me to understand when I first started writing. I wanted to be able to keep up with my nondisabled peers, I wanted to meet for coffee and write in cafes, in our joint office space at the University, in libraries, anywhere on campus. But that simply was not possible for me, and I was embarrassed. It was nearly finished writing this when I read Care Work by Leah Lakshmi Piepzna-Samarasinha and read the words, “writing from my sickbed wasn’t me being weak or uncool or not a real writer but a time-honored crip creative practice” (2018). This to me validated everything. It helped me unlearn the shame that I had long felt about the ways in which I write.
Finally, I want to write a thank you to everyone in my life who made this project possible. To my parents, despite what this paper may lead you to believe, I want to thank you for always supporting me and helping me through every step of this process. I want to thank you both for being open to learning and growing with me. To my dearest friends, Rebecca Swityk and Kael Kropp, for reading every word I wrote, holding me accountable, and encouraging me to keep writing every time I wanted to quit, thank you so much. To my incredible supervisor, Dr. St. Pierre, thank you for showing me how disability can exist within academia, for providing me with endless resources and insights, and for giving me the grace I so deeply needed. I extend the same gratitude to Linda Trimble, who graciously allowed me to take this extension and continuously validated the necessity of the work that I was doing. To my mentor, Rissa Reist, I want to thank you a hundred times over for your support and friendship, thank you for making academia a far less scary place to exist in my body. Many other professors and lecturers at the University of Alberta also played a huge role in inspiring my work, including Cressida Heyes, Daisy Raphael, David Kahane, Luke Sandal, Siobhan Byrne, Catherine Kellogg, and Steve Patten. To all of you, and everyone else at the University of Alberta who helped me along the way, my sincerest thank you for all of your patience and hard work.
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McGuire, Anne. 2016. War on Autism: On the Cultural Logic of Normative Violence. Corporealities: Discourses of Disability. Ann Arbor: University of Michigan Press. https://eds-a-ebscohost-com.login.ezproxy.library.ualberta.ca/eds/detail/detail?vid=6&sid =031d70ba-5235-428e-8eee-81a85021ac1d%40sdc-v-sessmgr02&bdata=JnNpdGU9ZW RzLWxpdmUmc2NvcGU9c2l0ZQ%3d%3d#AN=1237238&db=nlebk
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Shakespeare, Tom. 2013. “The Social Model of Disability” in The Disability Studies Reader. 214-221. Taylor & Francis Group. https://ebookcentral.proquest.com/lib/ualberta/reader.action?docID=1125176&ppg=221
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Yergeau, Melanie. 2019. Authoring Autism: On Rhetoric and Neurological Queerness. Duke University Press.
Blaming it on my Autism 
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