Every year, hundreds of studies involving disabilities take place in the US, like wide-sweeping lookbacks into cases of autism and research into multiple sclerosis. The majority of these studies, though, focus on viewing disability from a medical perspective, which is not surprising, since they are run by doctors and they occur in a nation which evaluates disability through a medicalised framework. As such, these studies are about identifying the why of disability with an eye to finding a cure, rather than to the how of disability, and the daily life of disability.
While I am not opposed to cure research, I do have reservations about it. Obviously, I don’t want people who are suffering to continue to do if there’s an option not to; most of my friends with MS, for example, would be absolutely delighted if they could take a cure, or if better medications were available to manage the disease and/or halt its progression. Hence, I support MS research. I support the hunt for better pain management options. I support the right of all people to access the care they deem appropriate for themselves, which includes access to cures and treatments for those who want them, and if these things don’t exist, we need to conduct research to find them.
Clearly, we need treatments for medical conditions, and individuals need to decide how they want to manage their own impairments and medical needs. That said, I get uneasy when cure research crosses over into eliminationism, with the goal of making sure that people don’t even exist before they even have a chance to decide for themselves who they want to be. This becomes a very different kettle of fish, a case in which research into ‘why’ becomes research into ‘never again.’
Should a child with a serious congenital condition receive surgery that will improve her quality of life? Absolutely. If that surgery is going to prevent paralysis or other serious complications, or will save her life, there’s no question. But what about a Cochlear implant? Or a surgery to address an issue that may be viewed as socially undesirable, but not necessarily harmful? What if the timing of surgery has no effect on the long-term outcome? Should she perhaps be allowed to grow up and decide for herself whether she wants surgery and other treatments?
These are issues that are going to become more pressing as more and more treatment options, and cures, are developed. And unfortunately, in all the research into why disability happens, there’s not a lot of conversation about how disabled people live now, and what can be done for people who are currently living with disability. Perhaps one area where this has become most obvious is in autism research, where scores of studies have been conducted to find out what might cause or be linked with autism. Brains have been scanned, children have been followed over weeks or years, therapies have been tested, families have been studied.
All of these studies are designed to provide a more complete picture of what the autism spectrum is, how to accurately diagnose it, and, of course, how to find out what’s causing it. What these studies don’t do, usually, is provide very much information about the lives of autistic adults. You know, those very same people that those autistic children grow up to become? Autism doesn’t magically vanish when you enter adulthood, and it comes with its own set of issues as you navigate adult environments; studies on the lives of children don’t provide much insight into the lives of adults.
And studies on either don’t offer much help for people who want to seek out information about how to live with autism, and how to accommodate autism in the workplace, at home, at school. When the focus is on eliminating disability rather than helping disabled people, disabled people lose. The federal government in the US itself acknowledges this, admitting that there’s a huge volume of studies on autism, but that it’s lagging critically behind in terms of classroom accommodations, integrating autistic students into school environments, and helping autistic adults navigate the world.
When your focus is on disability as a medical problem rather than a social issue, you miss the larger social implications. Ignoring the interactions between a person with an impairment and the surrounding world creates an incomplete picture. For an autistic student who frequently has meltdowns in class, the important question isn’t what causes autism or whether autism can be cured: the question is what will help the student. And these are the kinds of questions that largely aren’t being answered with medicalised disability research looking primarily at impairments, not people.
For the disabled scientist struggling to advance in a lab setting and constantly encountering accessibility issues, including ableism from colleagues as well as physical barriers, long-term research on the origins of, say, spinal cord injuries may be academically interesting, but not very immediately helpful. That scientist would be far more interested in the latest accessibility research, in the development of technologies and adaptive equipment to help her get around the lab comfortably and participate like her nondisabled colleagues. And she’d appreciate analyses of social attitudes about disability and campaigns to address ableism.
Part of the problem with many of these studies is that they often don’t include any actual people in their designers and personnel, which means the focus is turned towards what nondisabled people think disabled people want, and what nondisabled people might find most interesting. But for people living with disabilities right now in the real world, the priorities are different, and these priorities are not being met. This research could potentially be put to great use, and sadly, that’s not always the case.
There needs to be room for both medicalised and social studies of disability with an eye to helping people at all points of the spectrum, rather than a focus on medical issues to the exclusion of social ones. Because often, the question disabled people want nondisabled people to answer isn’t ‘why’ but ‘how can I help?’