Disability Activism: Nothing About Us Without Us

Author: Arieh Lisitza

Editors: Sariah Burdett and Kristin Mannschreck

An immunocompromised student is unable to attend classes in-person, and fails participation grades as a result. A wheelchair user is unable to access a lecture hall due to a broken elevator, and misses a major exam. A dyslexic student is unable to complete a reading assignment because the pdf is not screen-reader accessible, and cannot complete their final essay. If you were to ask each of these students, along with their professors, doctors, and family members, virtually everyone would agree that the lack of access resulting from their disabilities is a major issue. So why, then, is the inclusion of disabled adults in conversations about disability so important – and so controversial?

Despite the general agreement that lack of access to public spaces is a problem, the priorities and perspectives of clinicians and family members do not necessarily align with those of disabled adults. Clinicians and family members without personal experiences of disability often view disability as a fundamentally negative experience, or as a medical condition rather than as a social construct. Of course, this isn’t black and white. Not every doctor or parent of a disabled person subscribes to the medical model of disability, and not every disabled adult prefers the social model. There is, however, a strong relationship between disabled identity and how one views disability. Why? Well, one of the primary differences between the models is who should be doing the work. The medical model of disability argues that the impetus to “get better” is on disabled people. The sociological “sick role” is intended to be liminal. To stay there forever, as most disabled adults do, is seen as socially deviant. The social model flips this rhetoric by arguing that it is the job of all people, both abled and disabled, to build a world in which all bodies and minds are able to fully participate in society. To go back to the dyslexia example, the core issue here is whether it is the job of the student to improve their reading skills, or the job of the instructor to provide accessible materials. And of course, no one wants extra work.

There is also, of course, the presumption that disabled people cannot possibly have meaningful opinions about the policies and research that impact them. With neurodivergent adults in particular, the opinions of those who are non-speaking, struggle with daily life, cannot pass as neurotypical, or are otherwise “low-functioning” are discounted. They are told that they are “too disabled” for their perspectives to be genuine. In the cases of non-speaking neurodivergent activists who communicate through facilitated communication or communication devices, their credibility is often placed under intense scrutiny. Amy Sequenzia’s writings, for example, have often been accused of having been forged by the caretakers who help her type.

Conversely, neurodivergent people who can pass as neurotypical are said to be “not disabled enough” for their opinions to be representative. This is particularly ironic when you consider that “low” and “high functioning” are dubious labels. Many neurodivergent people who are labeled as “low-functioning” in one context will be labeled as “high-functioning” in other contexts. For example, an autistic person might be unable to live alone due to things like working memory issues, mental health, or seizures, but still be able to attend classes or work in their community. Others might be non-speaking, but have other effective methods of communication such as typing, ASL, or various forms of Alternative Augmentative Communication and are able to engage with their community through these methods. Many people also get better at masking neurodivergent traits as they get older, resulting in individuals who were “low-functioning” as children growing up into “high-functioning” adults. Not to mention, even if we are to accept that a “high-functioning” neurodivergent person’s experiences are very different from someone who is less able to pass, surely a neurotypical person’s perspectives are even less representative. Certainly, family and friends of neurodivergent people do have an important role in advocating for their loved ones. However, it is not appropriate for disability activism to center neurotypical perspectives exclusively and to discount neurodivergent viewpoints, as has so often been the case.

The end result is a non-profit landscape filled with philanthrocapitalism and a devaluation of neurodivergent voices. Autism Speaks, one of the largest groups working within the autistic community, has been widely criticized by autistic adults for their misalignment with disabled perspectives. Despite the organization’s nominally altruistic language (their mission statement reads “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families''), the organization has played a major role in the dissemination of misinformation and the promotion of stigma around neurodiversity. They have an extensive history of comparing autism to potentially fatal conditions, such as leukemia or HIV. Their rhetoric has also focused extensively on the “tragedy of autism”. While it is true that grief is often a normal part of realizing a child is autistic, to quote Jim Sinclair, “[to] focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them” (Don’t Mourn for Us). By continuing to construe autism as a horrible disease, something that destroys families, Autism Speaks’ paradigm often prevents autistic people from being able to meaningfully connect with their families, who are too caught up in their own grief to reach out to their children.

Autism Speaks also lobbied against an amendment to the Autism Cares Act that would have required the involvement of autistic people in the development of autism research and policies (Luterman 2020). Nearly half of Autism Speaks’ budget goes towards “understanding and acceptance”. While this sounds good in theory, they are extremely vague as to where that money goes in practice. The Autism Speaks annual report for 2021 listed increasing their social media following and sharing “inspirational stories” as examples of their efforts to “increase understanding” in the last year. Only 21% goes to support autistic people (Autism Speaks 2021).

This is where the neurodiversity self-advocacy movement comes in. The self-advocacy movement exists in direct counter to the provider and family-centric autism groups. They are, definitionally, run by and for neurodivergent people and they celebrate neurotype as intrinsic to personhood and identity. This, in itself, is a radical thing. When neurodivergence is recognized as an irrevocable part of a person, the subtle violence of asking disabled people to remove those parts of themselves becomes apparent. Disability self-advocacy groups have long used the slogan “Nothing About Us Without Us” to insist that disabled adults must have a voice in their own lives (Carmel 2020). This isn’t to say abled family members and clinicians cannot voice their own perspectives, but rather that the refusal to listen to neurodivergent people has led to a mistrust of providers and “autism moms” within the disabled community, and a massive waste of resources that could be spent improving access for neurodivergent people. Autism Speaks had a budget of $77.7 million dollars last year (Autism Speaks 2021). If those funds had gone to the issues that autistic adults prioritize the most, rather than towards combating the same people they claim to serve, how different would the world be?