Search This Blog

Friday, September 2, 2016

Inspiration is Misleading: Ask the Right Question

Recently an inspiration porn type story has made the rounds. In Florida a football program visited Montford Middle School in Tallahassee. College football in Florida is big business. Many players from division one football programs go on to become professionals. Apparently wide receiver Travis Rudolph, a Florida State Football player, went out of his way to sit with Bo Paske, a student who has autism. The story does not differ from various news reports. Rudolph was being kind in the extreme. All stories had the following photograph.

The image is striking for one reason. A student is sitting very much alone with Rudolph. No doubt the man in question was kind. I think every human that endured middle school remembers that awkward and often terrible time. Middle school can be a cruel place. I vividly recall being bullied in middle school. I was an easy target. Any kid with a disability was and remains an easy target for bullies. For years I wore a Milwaukee Brace. One steel bar was in the front and two steel bars formed the back. Kids in middle school thought it was hilarious to trip me as I neared a ramp where I would land on back and slide down the ramp. I still feel the humiliation. I also recall teachers thought this was funny as well. There were no offers of help. I was on my own. I suspect this has not changed.

Not one news story asked a basic question: why was the student sitting alone and totally isolated? Why was this student alone in a sea of students and tables? Was this by choice? Did the student want to be alone? Was he sitting alone because he was being shunned? Does he eat alone daily? Why was Rudolph praised for displaying basic human kindness? Was every student at Montford Middle School cruel to Bo Paske? Does the boy have any friends? What is it like to have autism and be in middle school? Surely cafeteria workers saw the child completely alone. Why did they not step in? This is yet another story of how the media misrepresents disability rights. No child should be forced to endure social isolation.

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. 

Monday, August 29, 2016

The Catholic Church, Do Gooders and Religion

This morning I read "This is what it Feels Like to be Prayed for Because of My Disability" by Carly Findlay. Link: Many people have prayed for my poor crippled soul. I have had many mentally ill and homeless men follow me and oddly pray for my rotten soul. Once I had a man follow me for many blocks down 5th avenue in Manhattan screaming at me. Apparently he believed I was the anti-Christ. I have been told repeatedly that I am paying for grievous sins my parents committed. My miserable existence is God's punishment to hurt my parents. Little old ladies sitting in wheelchairs come up to me in church and tell me they are praying for me and that I should not worry: "God will cure you. You you will walk again". I could go on at great length about a myriad of ways good Christians have verbally abused me. Over many years I have learned to avoid entering any Catholic Church and more generally any church remotely associated with Christianity. Church goers love to pray for my soul. They do so under the assumption I am suffering and that my existence on earth is inherently less. I am at my very core a sinner. Perhaps I am possessed by the devil. What I am not is truly human. I am not part of a minority group. The Church makes this very clear when it vigorously lobbies that it is exempt from the ADA and is under no obligation to make Churches and Catholic Schools accessible.

Horrific stories of abuse exist. I am harassed every time I enter a Church. I am not harassed often. I am harassed every single time. I know with 100% certainty someone will say something grossly demeaning. I am far from alone. Sarah Perkins wrote:

In 5th grade I switched schools, to a Catholic school, and it all went downhill from there (to put in very nicely). It didn’t take me very long to figure out that if this was how Catholics acted I wanted no part of it. In fact I went the extra mile and decided there was no God; because if God was in any way like anyone in my school I wanted none of that either. Catholic schooling made me an atheist. I’m sure I’m not the only member of this group. Link:

From Human Disability and the Service of God:

Mom told me that Aunt Lou confronted her after delivery asking her if I was my daddy's. "Did you sleep with someone else? Why else would she be blind? God probably made her blind so she didn't have to look at your sin while she was in the womb. Page 220

From the Disability Rag:

I remember a fragile, frightened looking 20-year old who told me that her grandmother had proclaimed her possessed by the devil. Took her to an exorcist. Her voice and hands trembled. She went on to say that her seizures had continued. Then grandmother said take her away--PUT HER AWAY. 1994, page 24-25.

Back to Human Disability and the Service of God:

I know for a fact that the Bible has all kinds of stuff about people with disabilities being helpless and pitiful. Just turn on the TV some night and watch those guys, preaching and telling all the people in wheelchairs to come forward and be healed. You think that helps us gain people's respect for what we can do? Page 221

Christian churches of all types talk a good game when it comes to people with a disability. The Vatican has been churning out papers on disability for decades. The current Pope loves people with a disability. Last June there was a large conference on disability at the Vatican. Link: Oh how Christians care. It gets better. Our current Pope loves to kiss and bless the crippled. People gush in awe when the Pope stops to kiss the crippled. This is front page news.

This does not help. This empowers those who consider themselves Christians to dehumanize people with a disability. We cripples are not truly human but an opportunity. For some do gooders we are a means to an end. Our miserable existence can be used to make them feel better. This plays out in a myriad of ways. For Carly Findlay, she was followed (stalked) by a stranger and prayed over. Yes, she was followed by an absolute stranger who wanted to pray for her. I have had this happen to me.  Just last year I was in a diner eating a breakfast sandwich when two men got on their knees and prayed for my rotten soul. The question is what can you do? Findlay wrote:

I could have spoken up and said its not ok. I could have refused. I could have told her strangers praying for me offends me, but this would have made a scene. I could have said I don't believe.
But I remained polite because I was shocked to be followed, and a polite response following "kind" acts like prayers is what's expected of me.
It can be hard to know what to say. I think, even if we do believe in God (or whoever), or demonstrate good values and politeness most of the time, it can also be hard to answer assertively. "No thanks" is what I can muster up but in hindsight I really want to tell them what I feel - that it makes me feel othered, lesser and pitiful. I wish I could drop my guard of politeness to say "fuck off". They've got no idea what my life is like just by seeing me in the street.
Unwanted prayers from strangers are not helpful. They imply I'm less than others, that Jesus loves me even if no one else does, and are self serving - making the pray-er feel good about themselves. They say I've committed a sin and need forgiveness. They put me (and others) on the spot because there's an expectation I'll be nice in response to their kindness.

Being polite in the face of such supposedly good will is the wise response. Saying "fuck off" carries risk. I know because I have had do gooders go from beneficent to hostile in seconds. A man holding the door open for you with a big smile can turn instantly hostile when one politely states no thank you. More than once beneficence has turned to fury replete with doors slammed in my face. The do gooders can not imagine I lead an ordinary existence. I am a tool to be used at their discretion. I have no right of privacy.

In my lifetime I have seen no substantial change in terms of how Christian do gooders react to my presence. I avoid going to Church--any church. I consider myself a recovering Catholic akin to a recovering alcoholic but we cripples have no AA meetings to attend. When speaking to a very close friend recently I was on my morale high horse and stated "All Christians are bad". My friend cried. I felt bad then and I feel bad now. Such absolutes are simplistic and wrong. Not all Christian are bad. I will never utter those words again. Christian is used here as a garbage can term. Let me clarify the point I am making. Two kinds of help exist. 1. Imposed help by do gooders who may or may not be Christian. When do gooders ask if I need help it is not a question. The offer for help is a declarative statement. If I decline help I instantly become the stereotype of angry crippled man embittered because I can not walk. The "help" is based on the assumption my existence is miserable when compared to the do gooder. 2. Common courtesy. People who ask if help is needed that is indeed a question. May I help you? Help might be welcomed. The suggestion of help is exactly that--a suggestion or offer of assistance. In the second example of help use a healthy dose of common sense--and yes I know common sense is in short supply.

What has not changed among Christians do gooders is the belief that sin is inherently tied to bodily pathology. Here any body that is outside a wide norm is a threat. We cripples who merely want to go about our day are failing our godly duty. In the gospels of Luke and Matthew they want the blind to see, the lame to walk, and the deaf to hear. We cripples have a place within the Christian realm. We exist to inspire, fear, and await the miracle cure. We are a wrinkle in the system. Not fully human and yet our existence is tolerated and used as a parable about life and its anticipated trajectory. We are a riddle. We are used as an allegory or in proverbs. The truth can be found in parables, riddles, and allegories. Sorry but we cripples have no answers. We are as flawed as the hordes of bipeds that surround us. Worse yet we are not meek and clearly will not inherent the earth. I do believe we cripples are righteous though. I do believe the blind can lead each other. I do believe disability rights are human rights. I am even capable of forgiving the do gooders I despise. Before Luke famously asked "Can the blind lead the blind? it was written:

Judge not, and you shall not be judged. Condemn not, and you shall not be condemned. Forgive, and you shall be forgiven. Give, and it will be given to you: good measure, pressed down, shaken together, and running over will be put into your bosom. For with the same measure that you use, it will be measured back to you. 

I pray do gooders will read the words above and take them to heart. I know I have.