Remembering Dana-Gay

Finally, the hard-won fight of Americans with disabilities was signed into national law known as the Americans with Disabilities Act. The air was electric, what a victory! I had never seen such an assemblage of people with every possible variety of disabilities celebrating such a historic moment for all. Every age, color, gender and religion were present because disability does not discriminate. We were united in a single purpose and our moment was NOW.  

Dana-Gay Fawcett, July 26, 1990

These are the words of my Great Aunt Dana, who on July 26, 1990, celebrated the signing of the Americans with Disabilities Act (ADA). Dana, a personal hero of mine, was a social worker and disabilities examiner in New Jersey. Known for her progressive views and brightly colored caftans, Dana speaks of riding up to the DC celebration on her scooter, avoiding dog tails and other celebrants, even though her multiple sclerosis continued to advance. A worn cane always sat near her.

There are many disabilities on both sides of my family (and probably most people’s), ranging from traumatic injuries to addiction, chronic illness, and congenital disabilities. It wasn’t until my generation that neurodiversity diagnoses were included (Autism, ADHD, etc.), and what followed was a long and arduous journey to understand what “disability” means in my own life, how it applies to me or doesn’t, and where I sit in the various systems around me. Despite growing up around disabilities and never seeing them as inherently negative, this moment highlighted a deep and painful stigma that I had internalized not because of the disabilities themselves, but because I had spent my life watching the world react to those disabilities and the suffering that followed.

Neurodiverse people are often, but not always, disabled, but there is some nuance to what we mean by “disabled.” In his book Neuroqueer Heresies, Nick Walker talks about the medical and social models of disability as they relate to neurodiversity. In this post, I’ll focus on the medical model and address the social model in the coming weeks. 

On page 61, Walker says, “In the medical model, the term disability refers to an impairment or defect which is seen as being located in the body and/or mind of an individual. Through the lens of the medical model…a person is seen as ‘having’ a disability.” In respect to neurodiversity and Autism specifically, Walker explains that this model sees Autism itself as a disability, rather than seeing Autistic people as sometimes disabled (social model). He explains that saying “Autism is a disability” essentially means “autism is a pathology or deficit. (68) “The assumption that autism is intrinsically pathological, intrinsically a problem or form of wrongness, leads inevitably to the assumption that the well-being of any given autistic person hinges on that autistic person somehow becoming less autistic. This in turn has the effect of keeping discourse and praxis focused on eliminating or ‘treating’ autism - using methods that are consistently harmful to autistic people, such as abusive behaviorist approaches or pseudo-biomedical quackery - at the expense of any substantial focus on actions that would actually improve autistic people’s quality of life.” (67-68)

Now, to most of us, the medical model might seem to make sense. Dana, for example, had MS and was disabled as a result. There was a medical reality there, and she needed medical care, right? Yes, but that isn’t necessarily what the “medical model” means, especially not in respect to Autism or other forms of neurodiversity. It means that our differences are the product of a medical problem, an “impairment or defect,” something to be treated, cured, or fixed - meaning we are inherently broken. This is the perspective most people seem to have in respect to neurodiversity, especially Autism, and it often results in the stigma, isolation, and stereotypes that harm so many neurodiverse people. 

Before she passed away in 2024, Dana’s sister, my Great Aunt Joyce, a heroine in her own way, told me something I’ll never forget. She said that when Dana was young, she had an intense emotional response to a breakup. Joyce said nothing of violence or self-harm, but a doctor who seemed to be particularly hostile toward women’s emotions (especially if they were “unruly”) convinced my great-grandparents that the only way forward was shock therapy. Though Joyce tried to stop them, Dana was subjected to a harsh regime of painful shocks to “cure” her of her strong emotions. In her later years, I would know Dana to be averse to strong emotions much of the time, sometimes getting upset with mine, but it was fear I saw in her, not judgment.

“It was a different time,” you might find yourself saying, but not as different as one might think. Today, Dana might have been recognized and diagnosed as Autistic. Neurodivergence is hereditary, and I can see it running clearly through both sides of my family. Her intense emotions would likely still have been pathologized as an impairment of her Autism, something she needed to be cured of so that she could exist as independently as possible among “normal” people. With some pain, I realize that what I saw in Dana is the same fear I see in the eyes of those who are afraid to consider their own possible neurodiversity or other disabilities. That fear creates a cage without bars, holding people in perpetual suffering even as they try to avoid it. A cage I once occupied as well.

Difference becomes pathologized when it runs against a power structure. There is power in the medical establishment, there is power in academia, there is power in law enforcement and government, all of which rely on a narrow, exclusivist model of what a “good human” looks like. Such models are generally based on the humanity of white, straight men, which connects us to the history of pathologizing sexuality and other struggles. The medical model of disability is a tool of that power structure, most visible when we get critically curious about where our ideas of “normal” come from. 

It is worth repeating that the medical model of disability is not about someone needing medical care, as many neurodiverse people do need all kinds of medical and other types of care. Those who need greater care and accommodation are no less worthy than those who need very little or none. The difference is in the fundamental way we perceive people and their differences, and who we give the power to influence that perception. This is the core meaning of “nothing about us without us.” 

This is one thing that Dana truly wanted people to understand. She didn’t have the knowledge or vocabulary of neurodiversity at the time, but she knew that disability is “not a dirty word” and that all human beings are worthy of dignity. In her essay, she said “Parking, public transportation, accessibility, curb cuts, accommodations at the work place, educational opportunities, and the recognition that we are an involved population in every area of all citizens pursuits. We use wheel chairs, assistive devices, and even our wonderful canine and human assistants, finally getting full recognition. We have come a long way!” Dana was a tireless advocate not just for disability rights, but for all people who were odd, strange, or just different. Until her death from MS in 2013, she poured her entire soul into this legacy of dignity and love.

Whether you are neurodiverse and/or disabled yourself, or know someone who is, or perhaps thinking of other disabilities (since there is considerable overlap), I encourage you to spend just a little time this July to think about the medical model of disability and how you have encountered it, because we all have. How does it participate in the upholding of “normal” by pathologizing difference? What are some of the more subtle, “benevolent” ways it has manifested? What else might you learn if you got curious and listened to even just three other stories of disabled people talking about their experience with it? What might you have to unlearn?