I have been enraptured by the phrase “disability is the responsibility of the disabled” ever since I discovered it in Unblinkable Difference . In so many ways, it elucidates a nebulous concept I have struggled to articulate. In so many ways, it encapsulates the frustration that fills me routinely.
A Deaf woman goes for a job interview. At some point, she will be asked, “What accommodations will you need to perform this job?” and it will be expected that she provide a detailed list with whatever explanation is necessary to help what is likely an ignorant person understand deafness and all its implications. Should she be hired, she will need to explain repeatedly these exact same things. She will probably have to identify a vendor from whom a TTY can be purchased and then install it herself. Because she is Deaf, she must enlighten the ignorant just to have a job.
A man who uses a wheelchair wants to attend a meetup for people who speak French. An unfamiliar cafe necessitates a phone call to see if there are ramps and a suitable bathroom. He will do a dry run to make sure the person who answered his questions actually knew what “accessible” meant. If there are architectural barriers, he is faced with the choice of asking for the gathering to change venues or not attending. Because he is a paraplegic, this man is responsible for making certain he can attend a public event.
A blind woman wants to get a new cell phone. First she needs to identify a model that is usable tactilely. Next she needs to determine the compatible screenreader and decide if it’s functionality suits her needs. Finally, she must not only pay for her phone, which is probably a more expensive model because of her needs, but then pay for the screenreader which is typically an additional $300. Finally, she must seek out an accessible format for the phone’s manual and cope with customer service professionals unfamiliar with how a blind person operates a cell phone. Because she is blind, she is responsible to do all necessary research, cope with a phone not designed with her needs in mind, and pay significantly more money than the average person for the privilege. (Apple’s I-Phone is the exception to this rule.)
After months of hurting all over and feeling lousy, a man is finally diagnosed with Fibro Myalgia. With no known cure, he and his doctor work to treat the symptoms, but he is still unable to work. Having paid into the Social Security system for fifteen years, he feels no qualms about applying for disability benefits. It takes months for his case to be reviewed and then he is told he does not have a disability and is therefore not eligible for benefits. He must then use his limited energy to find an attorney, get additional medical documentation, write letters, make phone calls, attend hearings, submit to medical exams by government-employed doctors, and juggle surviving with no income. Hopefully he can find the strength and stamina for this test of endurance. At some point, he will maybe receive the benefits he is due, but there will be no compensation for the time and energy he has invested. Because he has Fibro Myalgia, he must fight the system to get what he is entitled.
A Little Person is waiting at a bus stop and is approached by a fellow traveler. Striking up a conversation, the stranger begins to ask questions about being a “midget.” Areas of inquiry range from the mundane of driving a car to the intimacies of dating. From experience, the Little Person knows being rude to this stranger will cause the person to hold all Little People responsible. While these questions might be answered in the pages of a book or by surfing the web, the stranger has decided to interrogate this individual. Because she is a Little Person, she must educate the ignorant.
I and the woman who pens Unblinkable Difference contend that our society was constructed around the idea that the person who possesses certain physical conditions is responsible for all things related to it. As a whole, society takes no responsibility for educating oneself, identifying the accessibility of a meeting location, incorporating universal design into products, or providing effective support to battle the system. It is not enough that we must manage our conditions and do whatever is necessary to function with it. Because we are disabled, we are required to educating employers, making phone calls, doing research, paying extra for what we need, fighting the system, and coping with ignorant people.
Is this fair? Is this what other marginalized groups contend with? Is this the way things should be? Next week I’ll tackle that part of the issue.