Simo Vehmas, Professor of Disability Studies, University of Helsinki, President of NNDR, firstname.lastname@example.org, http://blogs.helsinki.fi/spvehmas/
I have been often asked why as a nondisabled person I’m interested in disability. Some ask the question because they assume that interest in disability requires a personal experience of impairment, and some because they doubt the credibility of an academic who lacks the personal experience of disablement. Whatever the reasons are, my answer lately to the question has been: “What makes you think that I’m not disabled?”
Obviously, it is because I’m socially privileged, but it is also because I don’t have a visible impairment. I do, however, have tinnitus, sleeping apnea and an unspecified arthritis of some sort. They’re all impairments, aren’t they? You may, however, think that these conditions are so minor that they’re not proper impairments and, as a result, my disability credibility is null. You might not say this to me in public because it would be politically incorrect, but, in my experience, most people (irrespective of their disability identity) do think along these lines.
Before I continue, let me get something straight first: disabled people’s representativeness in disability studies and in academia is a pressing and a highly legitimate concern. For example, conference organizers need to find a balance between keynote speakers in terms of disability in the same way as they should consider gender. But I’ve noticed that there are unspoken rules and expectations regarding what type of impairments are ‘legit’. As a result, I have witnessed many exchanges where conference participant speculate silently whether a certain keynote speaker was disabled or not. If you don’t have a visible impairment or if you are not comfortable sharing in public that you’re bipolar or that you have Parkinson’s or what have you, be prepared that you will be labeled as able-bodied, nondisabled or normal (in the most pejorative sense of the words). Should you say or write something controversial, this might become a striking weapon for those who disagree with your views.
All of us with a university training have been taught to avoid fallacies, such as ad hominem arguments; attacking a person and his characteristics instead of his arguments. Many of us remember the controversy Tom Shakespeare caused with his book Disability Rights and Wrongs (2006), and when Mike Oliver lashed out on Shakespeare by depicting him as “a relatively affluent person with a minor impairment who is never going to be at the sharp end of personal support services”, and who thus writes “well intentioned but meaningless platitudes.” (Disability & Society 2007/22, p. 232) Clearly, in order to deserve respect from Mike Oliver, there are few things to consider: do not disclose your impairments should you know that they are not ‘legit’ and, for goodness sake, do not openly admit that you get along, let alone prosper financially. Oh, and always agree with him, naturally.
It clearly is the case that your case is stronger if you write about disability as a disabled person (the same goes to other identities, such as gender and sexual orientation, as well). This is an understandable and to an extent fair sentiment, but it is also a bit silly because first-hand experiences do not guarantee sound reasoning and understanding. People are constantly wrong about who they really are, of what really makes them happy or unhappy, and so on and so forth. That’s why we need other people; partners, friends and psychotherapists to gain realistic understanding about ourselves. I can see no reason why this would not apply to disability as well. Just like all other human beings, disabled people too can be wrong about themselves and things that consider them personally: nondisabled people do not have monopoly on stupidity regarding disability.
Probably the most problematic group of disabled people are those with extremely limited cognitive capacities with little or no apparent understanding of verbal language, little or no ability care for oneself. Who should speak for them and who is qualified to write about them in academic forums? I recently took part in Philosophy of Disability Conference in Syracuse University (http://spawn2014.syr.edu) where I presented together with Ben Curtis a paper about the moral status of individuals with profound intellectual disabilities.
I was expecting criticism, but not on ad hominem grounds. One of the participants, Bill Peace wrote in his otherwise [sic!] fine blog about our paper the following:
“I read their paper and was turned off by the tone. They assumed an expertise I doubted they possessed. I do not question the intellectual rigor but rather I sincerely doubted they spent any time with people with severe disabilities. At lunch, I confirmed this to be correct. They produced a paper about people with severe disabilities yet have spent no time, as in none, with such individuals.” (http://badcripple.blogspot.fi/2014/06/syracuse-university-spawn-philosophy-of.html)
Had Bill asked me whether I’d worked or spent time with such individuals, he would have written differently, but that’s not the point. The point is that he did not say anything of substance about our paper and what was wrong with it. Despite the fact that Bill got his facts wrong, he got me thinking again how important it seems to be to some folks in disability studies who says rather than what is being said.
I do not mean to suggest in any way that first-hand experience of impairment, or close attachment as a carer to someone with severe impairments is insignificant. Quite the opposite. It is clear that some, for example, philosophical representations about disability are based more on prejudice than facts. However, I do maintain that being disabled oneself, being a parent of a disabled person, or having worked for a long period of time with disabled people does not automatically make one’s views about disability sound.
Besides, what kind of impairment and personal experience of disablism one should have in order to qualify as a proper disabled person? Or, how many years, months, days or hours should one have spent with people with profound intellectual disabilities in order to earn the right to write a philosophical paper about their moral status? Whatever the answer would be, it would be beside the point. The point is whether Tom Shakespeare, myself or whoever, have furthered or hindered our understanding about disability, whether our work will benefit or harm the fight for equal worth and recognition of disabled people.
It’s not about who wrote, it’s about what was written.
Notes Bill later regretted in a private email exchange the wordings of this extract. I fully agree with him about the poor accessibility of academic conferences and philosophy being too often disconnected from the lives of disabled people.