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Wednesday, November 25, 2015

The Disability Experience

I have been paralyzed for decades. I do not recommend the experience. I use this line when I want to reach people who know nothing about disability. It calms bipedal people and puts them at ease. I am not one of those militant angry cripples. I do not have what was once called "a cripple's disposition". My effort here is a purposeful dodge. Despite forty years of progressive legislation designed to empower people with a disability and make our lived environment barrier free most people are uncomfortable in the presence of those with an obvious disability. Mom's pull their kids away from me in the supermarket and tell their children "watch out for the wheelchair". Handicapped seating is often substandard and in the worst location in various auditoriums nation wide. It is never easy to navigate restaurant aisles. Purchasing a ticket to a sporting event requires multiple phone calls so a given venue can provide disabled patrons special service. Not a day goes by when I am not made aware of my disability. The people I know with a disability are equally aware. We know a cultural divide exists between those with and those without a disability. Bipedal people, the vast majority of them, are clueless. Most bipedal people I know would be shocked to learn a cultural divide exists. It exists because typical others don't want to know. They are content in the knowledge people are kind to the handicapped. They see little blue wheelchair logos all over the place. They see prime parking spots designated for the handicapped. They see lifts and elevators. They see ramps. They see wide bathroom stalls they love to use. What they do not see or experience is socially accepted disability based bigotry.

The culturally sanctioned divide between those with and without a disability does indeed exist. It makes the most mundane social interaction frustrating in the extreme. I was reminded of this fact when I read Dave Hingsburger post "History: A view from the Wrong Side" at Rolling Around in my Head. Link:  This man understands the cultural divide I have been forced to navigate my entire adult life. Simply put my existence is not valued. The existence of people with a disability are not valued. First and foremost bipedal people observe all the things I cannot do. Bipeds are wary of the handicapped. We are different. Our identity is spoiled. Stigma abounds. Wheelchair use is always framed as being bad. I am wheelchair bound. Oh, the tragedy! Let's not upset the handicapped. Let's treat them as special. Special equals segregation. Society does not want nor value wheelchair lifts on buses. Let's create "special" transportation in the form of substandard para-transit. The fact para-transit has never worked efficiently means little.  

My crippled brethren and I are a class apart. This does not bother me one iota. In fact I celebrate disability culture in large and small ways. I feel a connection with a mere head nod when I am in an airport and pass another person using a wheelchair. The nod is a silent signal of support. We are ready to do battle with the airline industry that despises our existence and right to fly. We cripples congregate together. For instance, we protest and celebrate. The lack of physical access angers us. The routine disregard for the ADA prompts we cripples to push back. When we assert our humanity we put our bodies on the line. We are risk takers. Like most risk takers, we needlessly die. I think about this every time I am forced into the street because a curb cut is blocked and I risk navigating around cars. When the news reports about a person who uses a wheelchair was struck and killed by a car the small head line typically reads "Wheelchair-Bound Man killed". Even in death our humanity is denied.

The cultural divide I have described is often used to discredit the views of people with a disability. When I state I fear hospitalization it is not for typical reasons. I do not fear illness, disease or painful forms of medical testing. I fear hospitalization because I am concerned my quality of life will be deemed so low a beneficent resident or physician will end my life for me. People without a disability scoff at me when I express such concerns. Ridiculous they say. It can't happen. I am deemed  hysterical or at best paranoid. This gets me back to Dave Hingsburger's observation that disability history is grim. He wrote: 

Disabled people have always been on the wrong side of history. We have been left in forests to die, we have been vilified by those who think that we are manifestations of sin, our 'final solution' though seldom acknowledged came first and genocide honed it's skills on our lives in the basement of institutions. We have been sterilized, brutalized, congregated, segregated, persecuted and destroyed. History isn't our friend.

It saddens me that the input of people with a disability is so often ignored or dismissed out of hand. When I assert that assisted suicide legislation represents a serious risk to people with a disability, the elderly, and terminally ill I am accused as having an agenda. Sorry but no. I have no agenda. I have an educated opinion based on a detailed knowledge of disability history that should be part of the discussion about assisted suicide legislation. I also grew up on various neurological wards as a child and learned a few things about how hospitals operate. I had a physician offer to end my suffering by foregoing life saving antibiotics. Like many others with a disability, I have something important others need to hear. Don't talk to me about safe guards built in to assisted suicide legislation. Don't talk to me about dignity. Don't talk to me about autonomy. Dave Hingsburger put it succinctly: I am not assured or reassured that prejudice will not be part of decision making about our lives and our deaths. I am very aware that the voice of the disability community is being purposely ignored by those who want laws that make our deaths easy to procure.

We people with a disability are the resistance. Our voices, however, are not valued. Our opinions and experiences are dismissed as anecdotal. I know this via the rolling of the eyes, the mocking gestures, the utter lack of respect, and open laughter when I state my concerns. I object to the purposeful efforts to exclude people with a disability because we supposedly miss the point of assisted suicide. The not so subtle message is we are narcissists who want others to suffer just like we do on a daily basis. The problem is I do not suffer any more or less than the typical biped. The problem is I do not trust legislators or the courts and I certainly do not think our for profit health care system has my best interests in mind. When I think about the rights of people with a disability I think of cases like Buck v. Bell and Oliver Wendell Holmes famous statement about "three generations of imbeciles are enough". I think about the ugly laws. I think about Willowbrook Institution. I think about the Nazi T4 program. Yes, times have changed. Important lessons have been learned. Yet people with a disability remain marginalized. We people with a disability continue to struggle because reasonable accommodations and social supports are grossly lacking. People with a disability have rights but often cannot meaningfully exercise those rights. Today no one would assert, as Holmes did, that people with a disability are "manifestly unfit". This does not mean bias against people with a disability is absent. Bias, I would contend, is wrapped in warm, soothing and misleading language. Compassion and Choices advocates for aide in dying not assisted suicide. Assisted suicide is described as death with dignity legislation. Compassion and Choices was once the Hemlock Society. Their former name did not resonate with the general public hence the name change. 

For those who support assisted suicide legislation it is all about emotion and salesmanship; it is a slick branded effort to pass legislation and sway the public. The fact such legislation puts people with a disability at risk is instantly dismissed. The problem is selling life is much harder. Selling life with a disability is beyond hard. Selling life with a disability requires we use our imagination. Selling life with a disability requires non disabled others to think. Selling life with a disability requires people to reject virtually everything they have unknowingly and knowingly absorbed about disability. Selling life with a disability is to reject cultural norms associated with bodily perfection. Selling life with a disability requires one to acknowledge disability rights and civil rights are one in the same. Are we as a society ready for this sales pitch about life and disability? In a word, no. This is an important paradox for me and others who value disability rights and our very life. Like others with a disabled body, I embrace my existence. Why others cannot see this is a mystery to me. A mystery that reminds me of  Joseph Merrick and others who had no choice but to exhibit their bodies. I am not an animal Merrick roared. I am a human being. 


Rob said...

Interesting and provocative points. Would you think that a more socialised health care system, such as the NHS, offered better safeguards? Are there any safeguards that you would deem appropriate?

william Peace said...

Rob, Interesting question r.e. socialized health care. Years ago I would have said yes, the NHS does a significantly better job. But now the NHS support services have been cut to the bone with disregard to people who desperately need social supports. As for safe guards, I think discharge planners are powerless people who serve the interests of the institution and not the patient. This must change. Physicians and discharge planners need far more power to say no. This plan will not work. I will not sign off on the orders. Perhaps independent living centers could be consulted and get people hooked into the disability community. I have seen this work for refugees to a degree. The main issue is to undermine isolation and find like minded people who can offer support needed.

Joanne Mitchinson said...

You are a very able person.

Kathylapan said...

I am also a cripple and I agree with you 100%. Sometimes it's easier to Just laugh at yourself first and preempt the sympathy.