The Social Model of Disability: A Good Idea Taken to Dangerous Extremes
by Lucy Kross Wallace
Essay originally from Counterweight.
During 17 years of living in various institutions for the disabled, and in the 2 years since I left, certain questions have nagged insistently at me…What changes in society are required if severe disability is either to be eradicated or to become no bar to full social participation?
Thus began a modest letter that would go on to catalyze decades of disability activism. Its author, Paul Hunt, was physically disabled and had spent much of his adult life in institutions, where he witnessed firsthand the scourge of ableism:
Countless times I have seen disabled people hurt, treated as less than people, told what to do and how to behave by those whose only claim to do this came from prejudice and their power over them.
Amidst these injustices, however, he also observed a “unique opportunity” for “those of us with unimpaired minds but severely disabled bodies” to prove that “our difference…does not lessen our worth.”
Soon after the letter’s publication, Hunt and fellow activist Vik Finkelstein founded the Union for the Physically Impaired Against Segregation (UPIAS) and penned a document containing a principle that would become the conceptual foundation for decades of advocacy:
In our view, it is society which disabled physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society.
Out of this document, the social model of disability was born, reframing disability as the result of interactions between one person’s impairments and a society’s norms. Since its inception, the model has played a pivotal role in the disability rights movement. The past few decades saw remarkable progress in securing rights, reducing discrimination, and improving accessibility for people with physical disabilities. In the 1990s, as the autism rights movement gained traction, advocates began to explore the model’s application to neurodevelopmental disorders.
These explorations represented a departure from UPIAS’s notion that society disabled “physically impaired people,” pointing to social norms and expectations as a source of disability for people with autism as well as being the forces that cause us to view autism as an impairment in the first place. As the neurodiversity movement grew in popularity, its agenda metastasized into an increasingly radical ideology which claims that, as articulated by Dr. Nick Walker:
The idea that there is one “normal” or “healthy” type of brain or mind…is no more valid than the idea that there is one “normal” or “right” gender, race, or culture. The classification of neurodivergence (e.g. autism, ADHD, dyslexia, bipolarity) as medical/psychiatric pathology has no valid scientific basis, and instead reflects cultural prejudice and oppresses those labeled as such.
This declaration is absurdly anti scientific and concerningly divorced from reality. By framing “neurodivergence” as problematic only because of prejudice and oppression, Walker blurs the distinction between impairment and disability that UPIAS’s founders articulated so clearly. He also suggests (and goes on to state explicitly) that medicalizing neurodivergence constitutes further oppression.
This viewpoint is unlikely to be shared by the many patients who seek medical treatment for psychiatric conditions.
However, this paradigm does appeal to a select portion of the autistic population. Despite being significantly disabled, neurodiversity advocates are generally capable of running advocacy campaigns, receiving graduate degrees, writing prolifically, and presenting to broad audiences. They tend not to have intellectual disabilities, nor do they struggle overmuch with basic communication, nor need round-the-clock care, nor represent the severe end of the autism spectrum. They see themselves as being limited primarily by social expectations, viewing their autism as a gift, not a burden, and accordingly, they are the social model’s fiercest champions. They reject attempts to “pathologize autism” and autism therapies, claiming that autism is an identity and that trying to treat an autistic patient would be akin to gay conversion therapy. They also object to the concept that autism ranges in severity, insisting that “low-functioning” autistics are no less impaired than “high-functioning” ones.
“Autistics who are normally called low-functioning may need 24/7 care…[b]ut that doesn’t make them any less intelligent…,” one advocate earnestly explains. “I can hear some parents saying: ‘but some adults ARE low-functioning. They still cannot care for themselves.’… My answer: neither can Stephen Hawking,” writes another. These objections betray a troubling willingness to overlook intellectual disability and embrace fantasies of unlimited autistic potential, despite abundant evidence to the contrary. Autism is associated with a wide range of challenges that take an immense toll on individuals’ and families’ wellbeing, including wandering, aggression, self-injury, psychiatric crises, gastrointestinal issues, sleep disorders, and more. None of this negates the devastating effects of stigma and discrimination, but to claim that these challenges are all caused by “society” is simply absurd. By dismissing problems related to intellectual impairment, we risk further harming an already neglected and underserved population. And yet, neurodiversity advocates continue to insist that there is nothing intrinsically impairing or problematic about being autistic, that everyone on the spectrum is perfect just the way they are, that if only the world were “designed by autistics,” every person with autism would thrive.
As the definition of impairment shrinks, that of oppression expands. Just as racism can now be identified in everything from bra names to math equations, woke disability activists discover proof of ableism everywhere. Neurodiversity organizations such as the Autistic Self Advocacy Network and the Autistic Women & Nonbinary Network pursue valuable advocacy efforts, but they also embrace a Critical Social Justice-based worldview wherein resolving oppression is no longer just a question of securing tangible rights or outlawing explicit discrimination. Rather, it is a matter of liberation involving the Sisyphean task of eradicating every trace of so-called ableism while simultaneously finding ableism everywhere. During my own stint as an activist, I excelled in the art of problematizing everything, spending inordinate amounts of time bemoaning the problematic nature of Netflix shows, research agendas, and everything in between. Needless to say, my complaints about the unfairness of the above phenomena hardly endeared me to potential allies.
Left unchecked, the conflation of annoying phenomena with intractable oppression leads to counterproductive forms of advocacy that rise beyond the level of petty disputes, actively interfering with efforts to secure meaningful progress toward disability rights. Sometimes, this takes the form of hostility toward advocacy groups and autism researchers, who are blamed for contributing to a “pathology paradigm” and widespread ableism. Autism Speaks, with its undoubtable history of espousing dubious viewpoints on vaccines and insistence on using person-first language, is a favorite punching bag. It’s perfectly reasonable for autistic people to object to the organization’s history, but accusations of eugenics and genocide are hyperbolic, to say the least, and when neurodiversity activists insist on boycotting Autism Speaks, they are attempting to channel money away from supporting autism caregivers in underserved communities, hosting thousands of autism-friendly events, and advocating for autism insurance benefits covering millions of people.
Hatred toward Autism Speaks remains a primary staple of neurodiversity advocacy, but activists have developed extensive repertoires over the years. From calls to disbar doctors who conducted an innocuous study on the grounds that it “traumatized” autistic children, whom the researchers didn’t see as “fully human” to ongoing controversy about applied behavior analysis, which neurodiversity advocates describe as invariably abusive and torturous to the insistence that technologies and interventions designed to help autistic adults find jobs are actually a form of gaslighting and trauma, there is no shortage of battles to pick. Autistics bemoan neurotypicals’ tendency to “silence autistics” and regard people on the spectrum as “the real autism experts.” But when activists pick apart every word for evidence of ableism, use their own experiences to make sweeping generalizations, and shut dissenters out of the conversation, is it any wonder they aren’t taken seriously?
Most concerning, however, is the extraordinary viciousness that neurodiversity advocates demonstrate toward anyone whose perspective happens to contradict theirs. At best, dissenters are deemed ableists and told to stay in their lane or check their privilege. At worst, online mobs will launch spectacularly hateful campaigns against the supposed ableist, accusing them of silencing “actually autistic” voices (even when the person in question is themself actually autistic). Often, the targets of this abuse are the parents of severely autistic children who share their experiences to raise awareness about the challenges of severe autism and instead find themselves being blamed for their children’s conditions.
A typical example of these disputes arose in 2018, after a parent posted a photo on Facebook depicting the backseat of her car, which her severely autistic son had ripped up, with the hashtag #AuthenticAwareness. Neurodiversity activists pounced, with a neurodiversity news site publishing a lengthy blog post accusing “autism parents” of indulging in a “feedback loop of woe” and “digital exhibitionism” after they “los[e] the emotional and physical wherewithal to support their disabled member’s family needs.” Its author outlines the six stages of this loop, wherein the parents of severely disabled children “make every disability-related challenge…about them,” “constantly express pain through digital exhibitionism,” and risk “escalating to violence towards the targeted disabled family members.” To summarize, for the mere crime of sharing her family’s story, this woman was labeled an evil bigot on the path to violent crime.
The social model constitutes a valuable framework for understanding disability, but neurodiversity advocates have neglected the goal of acceptance in favor of harassing and silencing dissenters. Hyperbolic declarations about “autistic liberation” and petty squabbles over slogans distract from serious disability issues and alienate potential allies. While Twitter users fret over logos and semantics, people with autism struggle to find jobs, are unable to access health services, face bullying and abuse, fall behind in distance learning, and are at a higher risk of dying from COVID-19. This is the ableism that the neurodiversity movement ought to be fighting.
Exchanging extreme interpretations of the social model of disability for a more moderate alternative would make space for heterodoxy in conversations about autism and facilitate multifaceted solutions to the problems at hand. By emphasizing the distinction between impairment and disability–and recognizing that this distinction may not always be clear-cut–we can address the social causes of actual oppression without denying the impairment that autism inherently confers. Additionally, we should allow for a diversity of viewpoints on autism, acknowledging that there is no one-size-fits-all explanation for disability. Developing a more moderate set of positions could garner greater support for the cause without scaring off those who are rightly perturbed by the current excesses of the neurodiversity movement.
Despite all the progress made in disability rights, autistic people continue to face prejudice and injustice on top of their neurological impairments. It’s time for the neurodiversity movement to abandon its radicalism or risk being part of this very intolerance.
Lucy Kross Wallace is an undergraduate at Stanford University. She blogs at lucidity.site.