Dear Readers,

Anybody notice the last of an entry yesterday? If so, you get a gold star for being observant.

Life has warn me out and I’m taking off some time from blogging. I hope to recharge while visiting my family and floating in a lake. Something resembling regular posting will resume in September.

Thanks for your understanding.

Our Responsibility?

From my last post http://peoplearentbroken.blogspot.com/2010/08/disability-is-responsibility-of.html, you probably figured out I don’t think it’s fair to make disability the sole responsibility of the disabled. The why of it might elude you. Disabled people are the ones with the “problems,” so shouldn’t we be the ones to solve them? They are *are* issues and if we want them addressed making it another person’s responsibility seems contrary to, well, everything upon which our culture is built.

I do agree the physical difference is contained within me, but it only becomes disability when I try to function within the society humans have constructed. Eyes were chosen as the method for decoding writing instead of something tactile, which makes me disabled. Our language is auditory, making Deaf people disabled when they try to operate in the broader world. Why is our written language visual? Writing developed when light was harder to acquire than flipping a switch would have made a tactile system useful. Why is our language exclusively auditory? A language of gesture was often used in primitive cultures for hunting.

There is no concrete, simple answer as to why society has developed in the manner it has, but it is nonetheless the society we inhabit. Unfortunately, many of its elements turn difference into disability. How does that make disability the responsibility of the disabled? How can society with one hand make me disabled and with the other hold me responsible for fixing it?

I have been pondering whether other marginalized groups are in the same position. Is racial inequity the responsibility of ethnic minorities? Clearly racism is an artifact of our social fabric that has labeled a given physical difference a marker of inferiority. WE do not expect an ethnic minority to educate an employer or check to make sure they are allowed in a public place. We do hold some expectations that they will fight the system, endure greater expense (groceries in the “ghetto”), and answer questions, but as a society we acknowledge the unfairness of such circumstances. Our insistence is that social expectations and societal structures shift to become fair.

Except, of course, when it comes to disability. I hold two elements of our social fabric responsible for this. The pioneer pull yourself up by your bootstraps mentality has so shaped our thinking that we almost automatically look for how an individual is to blame for their plight. Didn’t get an A on a math test? It’s not because the previous evening your father was beating your mother and you couldn’t sleep. No, you didn’t study hard enough. Can’t walk up that flight of stairs? Well obviously it is your fault because you are the paraplegic so you figure it out. Viewed in this simplistic way, it seems patently absurd to make the person who can’t walk up the stairs in charge of the problem. Unable to morph stairs into a ramp, they can only turn away from their goal.

I also believe our social norms about appearance and behavior play a role. WE think people should look a certain way. We think they should act in a particular manner. And when they don’t? Wow. Everything about life becomes a little bit harder and that is considered perfectly acceptable. So when a disabled person comes along who may be different in manner or appearance and need unusual things, it falls into a similar category. It’s their difference and their problem to solve or not solve.

Legislation attempts to address societal inequities related to disability and has somewhat reallocated responsibility. Unfortunately, although the ADA is twenty years old, it has not changed the minds and hearts of individuals let alone our society’s nature. Even the language of the law mandating “reasonable accommodations” unless there is an “undue burden” makes disability equity something to work towards not a concrete benchmark that must be met.

Perhaps the societal shift of responsibility will take more time for the Civil Rights Act of 1965 is twenty-five years older than the ADA. Possibly in 2035 I will not live in a society that finds it acceptable to make me responsible for a physical difference I did not choose. As a sprightly sixty-three-year-old, I am certain it will radically alter my experience.

Disability is the responsibility of the Disabled

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.