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.
