Too Short for a Blog Post, Too Long for a Tweet 428

 

Here are a few excerpts from a book I recently read, "Against Technoableism: Rethinking Who Needs Improvement," by Ashley Shew.

When people posit disability as a problem, they look for solutions. Disabled people can and do have problems, which sometimes include pain and dysfunction. However, many of our problems are social, structural, and practical problems that stem from the idea that disabled people are fundamentally flawed, unworthy of inclusion, broken, or inadequate. This is ableist thinking. We have to resist these kinds of assumptions, which produce simplistic disability stories that collapse disabled people into stereotypes.

I LOVE AMPUTEE COALITION OF AMERICA meetings, less for the educational sessions than for the experience of just being in a place where everyone is like me in some way. As I walk around the conference hotel, usually with my friend Mallory Kay Nelson (we road-trip it together, and I have not been to a convention without her), we end up casually looking at everyone we pass to see which limbs they are missing. It’s always a bit of a surprise to see non-amputees. Here, the nondisabled people are the minority—the odd ones out, not us. It’s honestly a relief.

The medical model is the idea that disability is a malady, something outside the norm that needs to be addressed, cured, eliminated, or remediated through medical or therapeutic intervention. Under this model, disability is something to root out, something to work against, something to fear or pity. Disability is framed as a problem that resides in individual disabled people—a problem that needs to be addressed. The solutions to this problem are different in different stories: examples range from early therapy interventions to technology like a prosthesis to preimplantation genetic diagnostics and elimination. Under this worldview, the role of a professional who “works with” disabled people is to identify the proper therapy, technology, or approach and deploy it in order to solve the problem. Nondisabled experts about disability make decisions about what disabled people need, about how to assess us and on what criteria, about where we belong (and make no mistake, they can institutionalize us if that’s where they decide we should be); about what benefits and technologies we qualify for; and about the trajectory of our lives—our life prospects, our job prospects (some of us are often pipelined into specific types of work); our education (including whether it’s worth giving us any education at all); even whether we can marry or have children. The Supreme Court case Buck v. Bell (1927) upheld the state’s right to forcibly sterilize disabled citizens, and it has not been overturned. 

There are lots of problems with the medical model. Foremost, of course, is that it doesn’t let disabled people talk back or have agency or make our own meaning. But there are other, more philosophical problems. For example, how do we even create a coherent category of disability? How do we define what counts as a disability and what doesn’t? The category of “disability” doesn’t fall simply along the lines of impairment: we don’t count most people who wear glasses as disabled, although they are visually impaired. And not everyone who is disabled is impaired: some people with dwarfism who are otherwise healthy experience the world as disabling simply because things are built too tall—from shelving in libraries and groceries to airport and bank counters to high-top restaurant dining (which, to be fair, is awful for most people). Categories of disability are constructed relative to our expectations and norms. 

As a good dis-orientation tells you, disability is a social construct—a mismatch between the self and a world that was designed to cater to normative bodies and minds. Disability is a made-up category. Of course, this made-up category has real effects, with enormous social, cultural, and personal significance and consequence. I’m obviously not saying disabilities aren’t real! I’m an amputee, and long before the idea of disability as a social construct captured me and others, people were born without limbs or were losing limbs—amputees show up in the fossil record. But why are an amputee, a person with dyslexia, a blind person, and someone who is bipolar all in the same category? (This sounds like the start of a joke.) What holds this category together? Disability, which today is a category of understanding, is actually a historical concept that developed relative to work, employment, and education. Historical and social factors underpin how disability is defined and how people are grouped. 

The wheelchair is the universal icon of disability. It’s on restroom doors, parking spaces, and ramps. Yet technologists are always trying to replace the wheelchair (which is itself a piece of technology). Exoskeletons and devices aimed at walking and climbing stairs—designed to make disabled people adjust to the world as it is, obviating the need for ramps or elevators or accessible doorways—are by far the most commonly covered mobility devices in mainstream media. The wheelchair, instead, requires the world to adjust to the disabled person. 

The Social Model of Disability insists that disability is a social phenomenon: the problems are not in the bodies or minds of people but in the stigmas and barriers erected by society. According to this model, people count as disabled or abled depending on social context, social structures, and the built environment. The categories of disabled and not disabled depend upon notions of normalcy, as well as philosophical ideas of what it means to be human and who is deserving of rights. Even today, definitions of disability can be porous. Some amputees deny that they “count” as disabled after they master prosthetic use; some Down syndrome advocates remind the public that not everyone in their community has extensive medical problems; and some little people point out that their biggest barriers are those that come from social stigma and those created by the built environment. These categories vary across cultures and over time. In fact, there are cultures and historical periods that have had no category of “disabled”—mostly times when many more people had what we would now call disabilities, due to disease, frostbite, or other harsh conditions of life. Today, many of our ideas about able-bodiedness and disability come from classifications based on who is suitable for plantation or factory work: we call people “disabled” when they can’t perform “normal” amounts of physical labor.

Some tropes are weirdly specific. When I work with students researching disability narratives, we find five main tropes as we sort materials about disability: pitiable freaks, moochers and fakers, bitter cripples, shameful sinners, and inspirational overcomers. These familiar, oft-repeated narrative arcs about the lives of disabled people show up in all sorts of media—books, film, viral social media memes, news. These tropes are stereotypes—limited and inaccurate frames of reference for people to consider the experiences of disabled people. They also get in the way of people listening to what disabled people have to say when it differs from these narratives.

Not every deaf child is a candidate for cochlear implants, and not every surgery is successful. And most new parents don’t know that the Deaf community resisted cochlear implants, or why. Videos of audiologists and medical professionals turning on a child’s implant for the first time—where a child jerks their head in the direction of the sound of their mother’s voice—have gone viral, serving as the only introduction to the subject for a wider public. These viral videos praise, sometimes explicitly but certainly implicitly, the power of technology to end disability. People reply in the comments with “praise hands” emojis and gush about the power of technology and thank God. 

But the videos don’t give any clue that not all Deaf people consider themselves disabled, that the child in the video will need years of interventions to be able to “hear” and communicate well with the cochlear implant, that having a technology for disability (even when it works) still means a great deal in terms of maintenance (batteries being sort of an everyday kind of worry, along with others), and that implantation removes any natural hearing a child may have. This technology story—highlighting just a few seconds or minutes of a surprised child (usually they show the videos where the child smiles, not screams or cries)—is given to viewers without context of the wider implications or any sort of follow-up and without any information from adults with cochlear implants about their various experiences.

This now-infamous fundraising commercial ends with replies from parents, siblings, and grandparents (notice: not autistic people themselves, who get no voice here) saying they are stronger than autism and united against it, ready to fight. The commercial first scares people, personifying autism as an evil force that steals children, comparing it to AIDS and cancer. This commercial frames autism as an outsider that ruins lives and families. But when you listen to autistic people talk, type, and write about autism, especially those supported and connected, you hear a different story. They talk about their brains as simply different, not scary, and about a world awash in misunderstanding for their expressions and behavior. To them, autism isn’t something to fight against; it is fundamentally part of who they are. 

We see in this commercial a deep ableism against autistic people, framing what autism is and what it does as a stigma. Up until very recently, Autism Speaks, a supposedly autism-serving charity, has had very few autistic members of their board of directors. Their funding allocations are also telling. They unfortunately put their money where their mouth is: they funnel funding in ways that reflect the same stigmatizing, harmful “awareness” rhetoric on display in their much-maligned commercial. In 2018, for instance, nearly half of Autism Speaks revenue was spent on awareness efforts and lobbying; 27 percent was spent on research, with 20 percent spent on fundraising and only 1 percent on family services (the category where spending would actually make the most difference for existing autistic people).25 And as one Autistic Self-Advocacy Network (ASAN) member with username Savannah wrote in 2015: “As a lot of that research is genetic in nature, prevention means research into selective abortion of fetuses with markers for autism. Not only does this not help autistics of any age, it encourages the idea that it’s better to not exist than to RISK being disabled (and in particular, autistic).” It’s easy to see the actions of Autism Speaks as both connected to historical programs of human improvement and as part of wider charity messaging about disability where disability is always equated with grave tragedy. 

In 2014, ASAN issued a joint statement against Autism Speaks’s hateful rhetoric, with support from the National Council on Independent Living, Not Dead Yet, Little People of America, and Down Syndrome Uprising. It’s heartening to see people speaking up and expressing/announcing their lived realities, though Autism Speaks still thrives financially as an organization and accounts for most top hits when you google anything about autism.