Religion and Disability

I am a recovering Irish Catholic. I state this with the same reverence alcoholics state they are in recovery. I value and abhor my traditional upbringing in a private but deeply religious family. I find my Catholic childhood ironic in that I cannot get the church out of my brain. Thus I may have left the Church long ago but the Church has not left me. Regardless of my views of the Church, it was and remains a great training ground for cultural anthropologists. The Catholic Church would like to believe it has a monopoly on all symbols we consider holy in the Christian world. One cannot go to Church and be unaware of symbolism and its power. I have turned this awareness away from the plethora of Catholic symbols such as the cross or rosary beads to an academic analysis of cultural symbolism particularly as it relates to disability studies. Cultural anthropologists have been fascinated by the cultural symbolism produced by a myriad of cultures�symbols that members often take for granted. This unwitting acceptance is evident in all organized religions and within the realm of the disability experience. We simply accept the cross and crown of thorns as the symbolic example of Christ�s suffering. Likewise we accept without question that a wheelchair such as the one I use is the ultimate symbol of weakness and dependence. We all know without thought that walking is normal and wheelchair use is not. In this essay I want to explore the symbols associated with disability, its public perception and unfortunate exclusion of people with a disability.



Let me begin with a forceful and hard to fathom conviction that is central to my core: I reject any suggestion that my disability and consequent wheelchair use makes me less of a person. This is not just wrong but hopelessly antiquated thinking. For me, and millions of other paralyzed people, a wheelchair is a powerful form of human adaptation, a technological marvel that enhances life. Some may think this is self-evident. If I have learned one thing in my 30 years of life as a paralyzed person it is that most people I come across think my life is either a tragedy, grossly diminished because I cannot walk or that I am some sort of super hero because I can do what everyone else takes for granted�education, marriage, family, career etc. In terms of religious symbolism disability is often associated with sin. An imperfect body, and a disabled person certainly has a flawed body, is unholy. Cure fits prominently into this discourse a well. Jesus healed the sick, cured the blind, and made the crippled walk again. The message here is not subtle�perfect bodies, non disabled bodies indicate a good spirit. Hence disabled bodies are inherently and morally flawed. We people with a disability are �God�s special children�. The first time I heard this phrase I was in seventh grade. By that time it was obvious I had a severe neurological impairment. I was in Catholic school when one of the nuns that taught me told me I did not have to do any homework. Confused, I asked why. She replied that I was �one of God�s special children and that homework was no longer necessary�. Not sure what to make of this I returned home and needled my siblings that I had no homework. My mother looked at me curiously and asked why. I told her what the nun had said to me. I could see the steam emerge from her ears and her face flush with anger. She told me she was going out and that she would be back in an hour. True to her word, she returned and told me I would be starting public school the next morning.

I learned a life lesson from my mother that has enabled me to resist any notion I was special�a word often used to describe children with a disability. Special is a buzz-word with a different meaning in religion. No care or thought is given to the fact children and the adults they become are socially isolated, encounter numerous architectural obstacles when they desire to enter a church or that they are virtually locked out of accessing adequate health insurance. In place of a humane social response people with physical and cognitive deficits are reduced to the notion of virtuous suffering. They are faced with trials of character and obedience to God. This leaves the person with a disability two unenviable choices�suffer in silence or search out a miraculous cure to a given disability. What is not an option is a �normal� life. Nancy L. Eisland has written

Living with a disability is difficult. Acknowledging this difficulty is not a defeat, I have learned, but a hard-won accomplishment in learning to live life that is not disabled. The difficulty for people with disabilities has two parts really�living with our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily�. (Eisland 1994:13)



The beauty and power of religion, what draws people and gives them comfort, is its unchanging nature. This timelessness is not good for people with a disability. Indeed, since I have been paralyzed I have routine and overwhelmingly negative experiences with the Catholic Church. In fact I would go as far as to state the Church is a hostile social environment for any person that uses a wheelchair. I endure some form of social harassment every time I set foot into a church. This can be as simple as locked side entrances to the total absence of ramps. Parishioners are not better. I have been told if I prayed harder I would be cured. Little old ladies bless my poor crippled body. Old men that can barely walk want to push my wheelchair. Priests and nuns can be nothing short of cruel. Before I was married I was interviewed by a priest who openly questioned my ability to father a child�it was the purpose of the union of man and wife. Nuns look askance at my body and seek to place me with the elderly and cognitively disabled in a �special� section. This location is always obscure and out of sight of other parishioners as our mere presence is too upsetting for others. What I have learned is to avoid the Church at all costs. A sentiment my son expressed to me when he was a little boy. Despite my problems with the Church I was determined to raise him Catholic. This effort had less to do with religion than the larger positive messages the Catholic Church has fostered since its inception. One Sunday after Church my son announced he was no longer going to go to church. I thought he simply found church boring as I had as a boy. But what he said startled me: �Dad, I don�t want to ever go to church because people are mean to you and it is full of bad people�. I was stunned. What I had intended to teach my son had been perverted into something that was, well, anti-Christian.



I know people mean well. No one wakes up and thinks I am going to be a bigot against people with a disability. Regardless of their meaning or intent the message sent is indeed bad and the social implications deadly for they extend beyond the steps of the Church. Claire Roy has passionately written:



�I hate the whole idea and I hate hearing it come out of people's mouth, because I know they don't get it and I know it gives them comfort to think that something as completely "normal" and frequent as disability and the huge challenges families face in dealing with it is in "God's hands" and not in theirs, plain and simple. It's easy to put God in charge because then you don't have to be. You don't have to make your business or school accessible, or you don't have to get over how my disabled kid looks, or deal with them at all, if God is taking care of everything, right? Once that miracle hits your home, all your troubles will be forgotten! I have not yet met anyone with a miraculous ending...other than the fact that they carry on and actually find some grace in the matter. There's your miracle.� (Roy September 13, 2010)



The real social tragedy when it comes to the Church and religion is how unnecessary the exclusion is of people with a disability. While my experiences with the Church is only negative within the context of a hospital it is the exact opposite. I have found hospital chaplains to be open minded, accepting and socially skilled individuals. These men are not afraid to rock the boat, to do mundane tasks, or whatever is necessary to help a person in need. What I find amazing about hospital chaplains is they do what I wish a parish priest did�provide spiritual guidance to people in need. This would include patients, family members and staff. Whenever I am ready to denounce all organized religion I think of my many positive experience with hospital chaplains. While non denominational the people I have met most often are Catholic priests. They are uniformly good people. But more than that they get disability, infirmity, old age, and death. They are a soothing helpful presence. Perhaps we should direct these men to the local parish.

Finding a New Normal

Next month it will be a year since I found the huge grossly infected wound on my hip. I have been humbled by the experience. In many ways my confidence was shattered. I had not been sick much less dependent upon others since I was a child. It was a terrible experience. I did my best but in retrospect I have many regrets and wracked by guilt (I am after all Catholic). I wish I had handled myself differently. However the past is the past and looking back accomplishes little. What I am most concerned with is finding what I have termed a new normal. While I have resumed my ordinary life I have done so with extreme caution. I check my skin at least once a day. I push up and relieve pressure on my skin frequently--at least every ten minutes. When I start teaching again I am sure students will think I have some sort of weird psychological tick. I know I cannot endure another serious wound. Thus when you remove all other variables I am now driven by fear--fear of another wound. This thought permeates everything I do. I hope my fear will go away but am not sure it will nor do I want it to vanish. Fear will keep me healthy.



What boggles my mind and directly causes me to remain fearful is the unknown. I still have no idea how I developed my wound. More than anything else this worries me. Could I be subject to a recurrence? The answer to this question is a simple yes. My skin is not as tough as it once was, especially at the wound site. This is a well established medical fact. To compensate I get off my skin, i.e. lay down, several times a day for hours. I have not done this since I was paralyzed in 1978. I despise stopping my day in this way. I am always aware of how long I have been sitting, planning when I can lay down. If I am up most of the day I am sure to lay down for an extended period the next day. Again, I despise this. I despise the fact my very fancy clinitron bed is still in my living room. I have plans to move it to my bedroom next month. And here is the problem. Skin care is trial and error. Sounds straight forward. No it is not. An error, just love the euphemism, could mean a day, week, month or months in bed. A so called error is a disaster. Hence my extreme caution. Yes, I could sit up from the time I wake until the time I go to bed at night some 15 hours later. But doing that at this stage is simply fool hardy.



Here is what keeps me up at night--will I ever return to norma? That is will I wake up, check my skin, get in my wheelchair and not think about my skin. I did this for 30 plus years. Sure I had nicks and cuts along the way but nothing that sent me to a doctor. I had never had a serious wound. Not one. I am surely not the only aging paralyzed guy living in America. I know I am not the only guy (or gal) who has developed and healed a severe wound. In fact I learned the most common would for a person paralyzed 30 years or more with no history of skin problems is a stage four wound. Go figure.



The above thoughts were prompted by an article I read in the July issue of New Mobility. The article in question "If I Only Knew Then..." was written by man who is my age, was paralyzed over 30 years ago, and had no history of wounds. Like me, he developed a stage four wound. As is typical of New Mobility, the article was positive and hopeful. Nary a bad word is ever printed in New Mobility, the happy paper for paralyzed people. They also found one of the few paralyzed people that was employed (the author was a lawyer), had great health insurance, and the employer was happy to make reasonable accommodations. I do not live in this fantasy land but multiple good points were made. Pressure relief is important. As we age so too does our skin. Hence we need to be more not less cautious as we age with a spinal cord injury. Avoid shear from clothing. Most importantly be willing to modify our life style. It is this last point that is most important. How many of us, myself included, are willing to modify our life style? Not many. I have done so. I do not like it but realize I have no other choice. When worried I try and remind myself where I was a mere three months ago. I was doing very little. I could not have gone to Seattle like I did earlier this month. My strength has returned to normal and my endurance is getting better daily. Six months ago sitting for a few hours was physically exhausting and transfers were an adventure. Today, I transfer as I once did and sitting is not tiring at all. In short, I have made giant strides physically. It is the emotional baggage that I have yet to overcome. But overcome I will. I know despite my fear, very day is better. Every day I get closer to where i was one year ago. Every day I inch closer to what once passed for normal.

South Wales Miners' Museum

Work has started on cataloguing the records of the South Wales Miners' Museum held by West Glamorgan Archive Service.

Located in Afan Argoed Country Park, the museum conveys the history of the South Wales coal mining industry and its workforce. The demise of heavy industry in Wales left many areas affected and the identity of these communities are often still shaped by their industrial legacy. The South Wales Miners' Museum developed from concern over the rehabilitation of the Afan Valley after mining had ceased in 1970, and a wish to commemorate this industrial past. The museum opened in 1976, and was recently refurbished. It relies heavily on a dedicated team of volunteers and public donations.

In 2001, recognising that storage conditions in the Museum were not suitable, the archive and photographic collections were deposited with West Glamorgan Archive Service. Along with the administrative records of the museum, the collection includes documents from the area�s collieries and other papers donated by the local community.

Cataloguing these records will open up another collection highlighting Wales�s proud industrial past. The records will compliment, in particular, the other coal mining industry collections (Emlyn Colliery and Brickworks and Powell Duffryn Limited) from the Powering the World project. It will also enable West Glamorgan Archive Service (working with Neath Port Talbot Cultural Services) to create a profile showcasing some of the highlights on the People�s Collection Wales (http://www.peoplescollectionwales.co.uk/).

For more information on the museum see http://www.southwalesminersmuseum.co.uk/

Jerry Fucking Lewis!

Last night before I went to bed I was browsing the news online when I came across the headline "Jerry Lewis No Longer MDA National Chairman". This news delighted me. I do not mention Lewis much on this blog. Suffice it to say in spite of all the money he raised on behalf of the MDA, I consider him one of the foremost destructive forces in terms of disability rights. Even as child I found the MDA telethon, all telethons, tawdry. The MDA telethon was just the worst of the worst. The cloying use of pity, the pathetic tear jerking song Lewis sang at the end of the telethon always seemed antiquated and wrong. I suspect what bothered me was I knew he was using children with disabilities. The message was clear: life with a disability is a fate worse than death. You people, Lewis implored, meaning those fortunate enough to live life without a disability, should give money to the pathetic creatures on stage. This worked for decades. Pity as a fundraising technique simply works. It still does even though telethons are now largely a thing of the past.

Thanks to people like Mike Ervin and Cris Mathews in Chicago, Laura Hershey in Denver and Harriet McBryde Johnson in Charleston protests against the MDA telethon and Lewis in particular spread. People with disabilities had enough. Offensive comments made by Lewis over the years began to be seen for what they were--deeply hurtful and bigoted. Still, the MDA resisted and now 21 years after the ADA was passed has ever so slowly begun to separate themselves from Lewis. Hopefully 2011 will be the last year of the abridged version of the MDA telethon. Lewis' resignation from the MDA can only be perceived as a good thing. I suspect his departure from the MDA was unpleasant, perhaps forced. I have no inside information in this regard but the carefully worded and terse announcement by the MDA provided no explanation for why Lewis will not appear on the upcoming telethon. According to MDA Chairman of the Board R. Rodney Howell Lewis "will not be appearing on the telethon" and "we will not be replacing him as MDA national chairman".

I am sure I will get more than a few nasty emails in response to the title of this post and critical words about Lewis. For those unhappy with me I suggest reading Harriet McBryde John's wonderfully witty chapter in her book Too Late To Die Young about her protest of the MDA telethon (Honk if You Hate Telethons). I will end with a quote from McBryde Johnson that highlights exactly why the telethon was so destructive:

"My mother thought telethons were tacky. She said no when we were asked to appear. She tried to distance me from them, but my own eyes told me the MDA thon was about people like me... The poster children looked just like us: we were all literally the same flesh... Together in the crip ghetto, my friends and I watched the annual parade of our little dopplegangers being publicly sentenced to death and saw one another through with gallows humor. Later, having moved on to the mainstream world, I wanted to go to law school, qualify for scholarships, get a job and car loan, start a business. But dying children aren't allowed to do such things; they can't be trusted to fulfill their obligations." Yes, the ordinary is beyond the crippled. And this my friends is why the fact Jerry Lewis is no longer associated with the MDA is a positive development.

Houston We have a Problem: Our Social Failure

Sorry for the lack of posts in July. I am afraid August may be just as slow. As already mentioned, I am loving my return to a routine life. Last month I made two trips. First to Vermont where I volunteered at the Vermont 100 (a fund raiser for Vermont Adaptive Ski and Sports). My big trip was out west to Seattle for the Seattle Children's 7th Annual Pediatric Bioethics Conference. I came away from the Seattle conference energized and depressed. Our health care system is hopelessly screwed up--not exactly front page news I know. At the conference there seemed to be united agreement on this as well as an utter lack of agreement on how to fix the health system. But it is heartening to know there are many MDs and PhDs out there that are just as disturbed as I am. Unfortunately, nothing is being done in the here and now to fix the myriad of problems doctors and people with disabilities encounter. United we could spearhead change. On the flight home I dreamed of working with caring compassionate doctors who want to empower and embrace the goals of all people, those with and without disabilities--social equality and equal access to health care. We people with disabilities, I thought, have much experience with the health care system and routinely get inferior care. Surely, working from the inside and outside of the medical community we could foster real change.

The above I have concluded is nothing but a pipe dream. Despite the obvious care and concern exhibited by the many fine physicians I met, they are an economic world apart from many of the people with disabilities they treat. As a group, MDs are well compensated and wealthy. As a group, people with a disability are unemployed in staggering numbers and often have poor health insurance--if any at all. The disparities are startling. This reminded yet again of the true social problems people with a disability have yet to overcome due to decades of socially accepted exclusion. In a mere forty years since our attitudes toward disability began to change and yet the only thing we have accomplished is a series of laws such as the ADA that are routinely ignored. This thought too came to mind as I flew on a commercial jet and was treated as poorly as expected in spite of many laws that supposedly make me equal. And yes airlines treat everyone poorly however I doubt anyone walking is ever forced to wait an hour to get off the plane after the last passenger has left. The point I am trying to stress here is that when it comes to disability we seem to always be the first to suffer. Suffer. An apt word given what is going on with the economy. We appear to have dodged what the media has hysterically called "Financial Armageddon". The scary part to me is that among people with a disability I am well off. That is I have insurance, bad insurance but insurance nonetheless, a supportive family, my own home and work. The people I worry about are those that have no voice such as those in a group home or those dependent upon social security and state support. Simply put, state and federal agencies cannot serve the population they were created to support--the elderly, disabled and poor. This troika is suffering in the truest sense of the word. The budget cuts hurt this population more than any other. Worse yet, no one cares. These people, my people, have no lobbyists. That have no power.

Let's take New York and California as examples. Since 2008 billions of dollars have been slashed from budgets that are set up to assist people with disabilities, elderly and the poor in California. $3 billion has been cut from Medi-Cal that insured about 7.5 million Californians. $4.6 billion was cut from Supplemental Security Income Program that supports 13 million people with little or no income. For people with a disability such as a spinal cord injury, a quadriplegic for instance, these cuts mean the difference between living at home and being in a nursing home. Those that end up in a nursing home rarely escape such institutions. To me, this is suffering--being forced from your home and family to a nursing home. To me, this is the sort of cut that is socially and morally unacceptable.

In New York, the NY Times is continuing its wonderful examination of group homes in the state of New York. In "Reaping Millions in Nonprofit Care for Disabled" the NY Times details how two men have become wealthy running a Medicaid financed non profit organization serving people with developmental disabilities. In addition to salaries that neared one million dollars each man had luxury cars paid for with public money. When their children went to college they passed on the tuition bill to their non profit group. While this was taking place the waiting list for group homes in the state remained long--hopelessly long in some cases. Families as a result suffered. There it is again, that pesky word suffer.

What I want to know is when will it end? How much can we take away from those in the most need? When will those being hurt, the suffering masses, rise up? I wish I had answers to these questions but I do not. I do know the situation is grim. I know it is unacceptable. So the issue is when and where will someone or some group in this country say no. No you cannot cut the budget. Lives are at stake. I am sure it will happen--it is not an if but a when. This is the day I look forward to.

Steamer Industries featured on Dirt website once again!

http://dirt.mpora.com/news/scenes-steamer-industries.html

Pretty happy to have the product featured on Dirt which is one of the biggest mountainbiking websites in the world!

Thanks again to David Quinlan for filming and editing the video, and Billy at dirt for getting it on there homepage!