Rachel’s Note: This is reposted from my site, but I figured it should also be posted on Alas.
Admin’s Note: Here’s my weak-ass contribution to blog against disablism day. I’m in the middle of finals, but I figured I need to say something. I guess I made one mini-contribution over at Hugo’s because I really disliked his response to Mr. Soul, but that is not really enough.
So let me just say at little bit since I have one hour left today. This is not edited or proofed, please read around my typos.
Most of what I know about disability issues I learned from my good friend Kate. She posts around here and over at Alas sometimes. Kate was by closest grad school buddy. When were we up at school working in our offices until 11 PM, we’d have conversations about everything. A big part of that “everything was sociology.” I told Kate about racism research and she taught me about disability research (and we both already knew about feminism). Kate taught me the academic stuff–disability vs. impairment, but she also taught me about the lived experience of disability. Kate has a genetic neuromuscular disorder, and from listening to her tell me her story (or watching her live through it) I have changed the way I think about disability.
One of the big issues we have discussed is the difference between having a visible or hidden disability. Kate has a semi-hidden disability. Sometimes a person may notice it, and sometimes s/he may not noticed the disability. For people with hidden disabilities one of the big issues is coming out. Who should people tell other about their disability? When should they say something, and when should they be quiet? This issue permeates many aspect of life–for example, dating. When or how should a person tell their the boyfriend/girlfriend about disability? Will the boyfriend/girlfriend run away or be uncomfortable? Or what about your kids? If a child has a hidden disability, when do you tell the child or the child’s care giver? Or in the case of these genetic disabilities, should a parent test his or her child for the disability? If the child does test positive, will the child face genetic discrimination?
I’m not saying people with hidden disabilities have any more trouble than those with visible disabilities, but I am saying that the way people navigate their social lives is affected by whether or not a disability is hidden or visible. When most people think of disability, they think of the a person in a wheel chair (in fact, the wheel chair is almost a universal symbol of disability). They don’t realize that the person sitting next to them doesn’t have a twisted ankle, but a neuromuscular disability. They don’t know that their coworker has suffered with depression for years or that the reason their student leave in the middle of class everyday is because s/he has a back injury. Many disabilities are like this–dyslexia, epilepsy, some vision or hearing impairments.
Coming out about a disability can cause shame and fear that the person revealing the disability is “just looking for sympathy.” Sometimes coming out about a disability means having to acknowledge an identity as a disabled person, and accepting such a label is not easy. (In fact, I think it is quite similar to coming out for people in queer communities.)
So I guess one of the things that Kate taught me is that many people with disabilities are not going to come out. It is really risky, and it is incumbent upon all of us to make that coming out process easier. I try to do this by including a disabilities statement in my syllabus. Here is how it is worded:
If you have a hidden or visible disability, which may require classroom or test-taking modifications, please see me as soon as possible. If you require note taking, extra exam time, or any other disability related services, please be sure to call M. F. in the Disability Support Services Office at xxx-xxx.
It’s not perfectly worded, but I always mention it as a way to let my students know that I am conscientious about disability issues. I also try to make it clear that I am aware that not all disabilities are readily apparent.
Ok, maybe it’s not so weak…..off to bed.