Defining Disability in an Age of Enhancement

Last week I made a presentation at a conference on disability rights held at Union College in Schenectady, New York. I was invited by my former student, Joe Stramondo, who is now teaching philosophy in Michigan. The topic that our panel addressed was the impact of enhancement technologies on the understanding of disability.

One of the contributions that disability studies has made to the understanding of health and ability has been to popularize the “social model of disability.” While the medical model sees the line between “species-typical” and “disabled” as self-evident, and the self-evident goal to be the curing of disability, the social model focuses on the way that ableist assumptions, biases and institutions create, or at least exacerbate, disability. The social model argues that the barriers that physical, sensory and cognitive limitations impose on individuals are as much the result of society’s unwillingness to embrace and accommodate those differences as they are intrinsic to the limitations themselves.

Some disability activists have carried this critique of ableism to an extreme that I have dubbed “pro-disability,” denouncing cures for disabilities and prenatal screening as contributing to ableism. They have attacked people like the late Christopher Reeve for advocating for cures for spinal cord injuries instead of focusing on anti-discrimination and funding for human and technological assistance. That small group of disability activists has attacked enhancement enthusiasts for allegedly promoting a eugenic future that would eliminate people with disabilities.

I think these few voices are a small minority of the people with disabilities around the world, the vast majority of whom do not celebrate their disabilities or see them as empowering identities, support programs to reduce the incidence of disability, and who happily opt for cures when they are available. For most people with disabilities there is not a zero-sum trade-off between attempting to prevent and cure disabilities, on the one hand, and providing maximum support for those who have them on the other.

In response to the hostility to enhancement I have often argued that enhancement advocates and mainstream disability rights advocates want the same things: for all of us to have the widest possible choices about our bodies, senses and brains. Enhancement enthusiasts can certainly understand someone who prefers wheels to legs, or sign language to cochlear implants. Enhancement and disability rights advocates agree on the importance of access to assistive technologies. There are even some enhancement enthusiasts who embrace conditions like Aspergers as part of a welcome human neurodiversity.

On the other hand we do still generally disagree about the acceptability of (or even moral obligation of) prenatal screening and therapy to reduce the incidence of disability. But in the end what most disability activists want is for prospective parents to have access to information about the lives of people with disability, and possible future therapies for those disabilities, so they can make informed choices. Most enhancement advocates would also agree with fully informed parental decision-making, even though we probably have different ideas about what good information would entail.

So I approached this panel on enhancement with a certain amount of trepidation. Delightfully I found the convergence of thought striking. My talk (you can download the PowerPoint slides here) argued that enhancement technologies will validate the social model by demonstrating that the lines between illness-disability/health-ability/enhancement are not natural facts, but shift around historically depending on politics and technology.

I offered the example of illiteracy, which was the species-typical norm until the last century. Literacy is the first step towards post-human cyborgization since it allows us to download the contents of our brains onto external storage media and upload them again later. It is a very recent addition to human repertoire.

In the 19th century many “doctors” were concerned that reading and learning would make people—well, women and working class people especially—sick or crazy. It was only in the 20th century that illiteracy became a significant “disability,” with medicalized diagnoses like “dyslexia.” The standards for illiteracy slip around the way the standards for disability do in general, with functional illiteracy meaning different things in different places. (Monolingualists and people who can’t do Boolean Google searches should probably considered functionally illiterate today.)

But literacy also shows the weakness of the purely accomodationist social model. Literacy is a good in itself, like being able to see, hear, think and walk. No one has argued that promoting literacy discriminates against illiterates, or that the focus of public policy should be on accomodating illiterates into education and the workplace. A few people may choose not to have those abilities, but most will if given the opportunity.

Resisting medicalization is still important, because the causes of illiteracy, sickness and disability are partly social and political, not simply medical. But public policy needs to focus on how to get and keep as many people literate, sensate and able-bodied as possible. All of this will apply equally to future “enabling” technologies.

So one of the consequences of enabling technologies, I argued, will be to reveal that we are all “disabled” relative to the higher states of ability, senses, emotions and cognition that will become routinely available. Paradoxically this will also a triumph of medicalization, since eventually every human condition will be “treatable.” So there is a real dystopian potential, and a real utopian opportunity, in this future. The dystopia is one where the majority of people see themselves as disabled because they lack access to enablement, and are constantly struggling with drug companies and doctors to afford what the affluent take for granted. The utopia is one where the majority have access to safe enabling technologies and choose which ones they will use.

In conclusion I suggested that the “capabilities approach” of Amartya Sen and Martha Nussbaum was a more attractive alternative to either the medical or social model. Instead of trying to fix disability and illiness (the medical model) or adjust society to accomodate every body and brain (the social model), the capabilities approach focuses on expanding human abilities to accomplish life goals. It doesn’t get stymied by trying to define the “natural” or “ideal” amount of health or abilities, but says it is better for people to have the social, economic and technological enablement to do more.

Instead of measuring social progress with GDP, or the percent of the population “unhappy,” “sick” or “disabled,” the capabilities approach focuses on more people being able to do more things year by year. I look forward to more weaving of a technoprogressive policy around disability on the basis of that kind of approach.