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Wednesday, August 31, 2016

All Lives Have Value

I truly believe all human life has value. I value my life. I know others do not think the same way. I know this because strangers tell me they would rather be dead than paralyzed. Ableism, a word few people outside of the disability community can define, is woven into the fabric of American society. We people with a disability are a problem. There is a hazy idea that a law was passed a long time ago that solved the cripple problem. My friends, I assure you the ADA, Americans with Disability Act, did not solve the cripple problem. Every day I leave my apartment building I encounter an vast sea of ADA violations. The law itself is weak but the real problem remains unchanged--the ADA is not thought of as civil rights legislation. Legally my civil rights are protected and the law is enforced by the Department of Justice. This is great. Yet my existence is and has remained a problem. Everywhere I go I am a problem. Pesky bipeds have no clue. What typical others absorb about disability is inherently wrong. All the wrong lessons about disability are learned in secondary school. We have special buses. We have special education. We have resource rooms. We have IEP, Individual Education Programs. We are from birth to death deemed special. I assure you I am not a problem nor am I special. But that is exactly the way I am treated.

Being deemed special is unAmerican. We are all created equal. Among the most famous Thomas Jefferson quotes is the following. We hold these truths to be self-evident: that all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness. The word special is absent. Worse, many assume life with a disability is less. Much less. Inherently less. This lesser life contains less value. Examples abound. In recent days I have left two tabs open on my computer. The tabs concern Bonnie Liltz. She was convicted of involuntary man slaughter. Liltz killed her daughter--her severely disabled daughter. The defense argued she should not be imprisoned. She got four years. People were outraged at the sentence. How could the judge do that! She cared for her severely handicapped daughter! She is a cancer survivor! The given is that Liltz's severely disabled daughter's life was an immense burden. Fear not, Liltz appealed the decision and she was released from prison. Link: Liltz was released from prison because she was perceived to be a martyr. She sacrificed all to care for her daughter. Think about. How many parents kill their child and receive nothing but sympathy and understanding? Only parents that kill disabled children.

Need more evidence?

Jerkika Bolen, a 14 year old girl with SMA type II, told her mother her pain was so severe that she wanted to die. As a person with a significant disability this request was deemed logical and understandable. She was deemed terminally ill. She wanted to have a party--a final dance. In the mainstream press she was lauded as selfless and brave.

Christina Symanski was a secondary school teacher who broke her neck. She believed her life had no value. She wanted to die. She was determined to die. Die she did. She followed the advice of Compassion and Choices and legally killed herself via VSED (voluntary suspension of eating and drinking). Her family respected her desire to die.

In Japan 19 men and women with severe disabilities were murdered. It was the largest mass murder in Japan in the post World War II era. In advance of the murder spree the killer wrote "There are 800 million people world wide. Money is spent on them. It should be used for other purposes" The killer stabbed his victims to death. The victims have not be identified as in all other cases of mass murder. The victims were disrespected in  life and now death.

The Zika virus has been described as a "formidable enemy" by the New York Times. Article after article has been published about the economic burden Zika babies will create. Many articles have tried to estimate exactly how much the Zika babies will cost. The estimate is four million per baby. The message here is not subtle. Zika babies should not be born.

Most will recall who Kack Kevorkian was. Dr. Death was on the front page of every major newspaper in the nation for over a decade. He killed hundreds of people. The people he killed were mostly women with a progressive degenerative diseases who were not terminally ill.

In 1990 a Georgia court ruled that 34 year old Larry McAfee, a quadriplegic, who was not terminally ill had the right to disconnect himself from his respirator and die. Of course all quadriplegics want to die. 

In 2010 the McAfee scenario played out again. Dan Crews, a quadriplegic, feared being sent to a nursing home and expressed a desire to die.

Art Caplan, one of the most well-known bioethicists in the nation, argued an elderly man had the right to refuse treatment for a bedsore and as a result die. The man's refusal to let nurses turn him caused an uproar. Caplan deemed this a "tough case" but thought it best the man be allowed to die. He was not terminally ill. 

I shake my head in wonder on a regular basis. How can bipeds be so stupid. Are bipeds willfully ignorant? Do they fear disablement so much they stick there heads in the sand and like a child refuse to deal with the gritty reality of life with a disability. What the vast majority do not get is that life with a disability is performance art. I am always artful in the ways in which I navigate the world. I get that. There is such a thing as disability gain akin to Deaf gain. Yet disability is never framed this way. Disability is tragic. In the words of my good friend Stephen Kuusisto: 

When able bodied people don’t understand the richness and beauty of disabled lives they remain convinced disability is a calamity. Sometimes I think we should just drop the word disability and use calamity instead. Calamity Parking. Calamity seating. Calamity services. Imagine the conversations. “How did you become calamitized?” “Oh, I played with dark magic…” Or: “God grew tired of me.” Link:
I love this. This undermines the ubiquitous question "what happened to you". Oh how I laughed when I read these words. I think we cripples must embrace calamity. We already have a super hero figure--Calamity Jane. Well, maybe she is an anti hero. Much of what Calamity Jane said she did is open to question. However she was a regular in Buffalo Bill's Wild West Show. She was a woman that dressed in men's clothes. She was friends with Wild Bill Hickok. She was an excellent marksman. She appeared in the 1901 Pan-American Exposition. Separating fact from fiction is not easy. She was believed to have been an alcoholic, illiterate and in bad times a prostitute. She was a bad lady. Why is she famous? She was widely regarded as being a dare devil yet at the same time she routinely showed great compassion to others, especially the needy, sick and elderly. As the eldest in a large family, at the age of 14 she took responsibility for all of her younger siblings. She held a wide array of jobs--dishwasher, cook, waitress, dance hall girl, nurse and my favorite ox team driver. 

Calamity Jane is a fitting figure for disability rights. I suppose I can relate to Calamity Jane because people who read my work at Bad Cripple imagine me to be a ferocious figure. I am imagined to be a huge man, think Paul Bunyon. I have no axe but surely a guy who writes with such resolve and fury for social justice must be a big dude. Sorry, I utterly fail to live up to these expectations. I am quiet and reserved. I am certainly not an imposing figure. I am a skinny middle aged Irish Catholic with a crew cut and white beard. Yes, my pony tail is long gone. I am unstintingly polite and kind. Misinformation about my life abounds. In a classroom I am a funny and engaging professor. But I am not the confrontational figures others imagine. I do not slay bipeds at will. Indeed, bipeds do not shake in fear when they see me. Quite the contrary. I am very much human and as vulnerable as any other person with a very different body or obvious disability. I am a valued human being. In fact my life is as valuable as any other human being. Now that is a radical idea. 

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