Saturday, June 26, 2010

Prejudice towards disability fron a historical stand point

This is a paper I wrote in college. Its long and a little outdated but I think despite the amateur writing style I learned some useful things in the process:

When I was born I weighed 900 grams and was literally the size of a mango. My dad could carry me in a single cupped hand. I have been accompanied all my life by one physical characteristic that as irrelevant as it might be to my personhood has determined much of the circumstances of my life: a disability. I have been in a wheelchair ever since I can remember. My limited mobility is due to having cerebral palsy, which is a muscular condition brought about by my premature birth. The part of my brain responsible for communicating with my legs to enable me to walk unaided did not receive enough oxygen, causing muscular spasticity in my lower extremities. The degree of spasticity varies from person to person .Luckily in my case my upper body has close to normal mobility and my speech and intellectual abilities are intact.
Everyone that I have met has treated me with dignity and love and contrary to what one might expect, no one has made fun of me in a negative way because I am in a wheelchair. However being disabled has presented me with challenges and barriers that I am working through. It has taken me a long time to develop friendships where people consistently come to visit me and invite me to participate in social events. Finding a girlfriend and shifting people’s perception so that they may see me as a fully erotic and sexually capable human being has been an even harder endeavor.
While being in a wheelchair has meant that at times I am much slower at accomplishing every day tasks than other people, and having to undergo surgeries can be painful with a long process of recuperation, for the most part being in a wheelchair is so natural to me that I am not bothered or upset by it. This has lead me to think that the “problem” that physically disabled people have to face is not that we are disabled but rather that we can be limited by subtle social prejudices that parents, teachers and peers can unconsciously impose upon us as a result of our difference causing an implicit form of segregation. This problem cannot be solved only by making more places wheelchair accessible. It is deeply connected with the ability to embrace diversity and must be treated from the inside out to change an attitude of exclusion to one of inclusion.
My aim is to examine several theories regarding the origins of prejudice treating disability as a historical phenomenon relating the information to my own experience to then offer tentative solutions to demystify the distance and fear that some individuals feel when meeting a disabled person. This investigation places a greater emphasis on physical disabilities because they are closer to my own experience but its repercussions should not be confined to disabled persons, it should also invite us to dismantle the false illusion of normality to give dissimilarity the acknowledgment and worthiness it deserves.

Theories about the history of disability as prejudice
The non disabled population often is subliminally reminded of the archetype of the monster when encountering a person with a disability. I don’t mean to suggest that they believe we are evil but there seems to be a strong instinct to turn away from us or stare in shock as if frozen for a moment by the gaze of Medusa. Carol Poore unmasks this association in her essay Disability as Disobedience by illustrating the way that people viewed the disabled in the middle ages:

“The view that misshapen or mentally defective infants were somehow less than human was connected to a perception of their differences as the physical evidence of magical or divine intervention into their lives… – this is vividly evidenced in artist’s depictions of witches and devils as both lustful and hideously deformed creatures... Luther saw the devil as the source of all deafness, dumbness, lameness and fever and believed that “idiots” as the devils changelings should be drowned in order to stamp out the devils work. (Poore: 5:11)

The association between the hideously evil monster and the deformed body was a vital agent in the creation of an irrational hidden sensation of fear when encountering a disabled person in passing. I don’t think the non disabled necessarily would identify the feeling as fear, but at an unconscious level the shock a “normal person” might feel when encountering someone with a disability is linked with the old impulse to stay away from what is supernatural in the sense that it transcends what is commonly seen as natural.
Susan Schoon Eberly finds that “children born with physical defects have evoked a religious response since at least as early as 2000 B.C.”(” Page 1, paragraph 2) and uncovers evidence of people’s early reactions to disability in the myth of the changeling:
“The pattern this grieving process takes is clear, both in clinical practice and in many of the changeling’s tales. First there is a time of rejection, of denial: the patterns which this denial takes are repeated in tale after tale. Wentz tells of a family near Breadge in which there was a “…fine baby girl,… and the piskies came and took it and put a withered child in its place. The withered child lived to be 20 years old and was no larger when it died than when the piskies brought it”
(Page 4, paragraph 4)

The myth of a supernatural species taking away a normal child and replacing it with a supernatural one is really a metaphor for the foreignness some parents may feel when encountering a disabled child Both with the disabled person and the changeling a common parental response is: “this is not my child”. Then comes a phase where the parents in their anger and guilt often
“either force the changeling to reveal its true nature or force its
fairy parents to return their original child” (Page 4, paragraph 5).

This alludes to the phase where the parents of the disabled battle between seeking to understand their child’s distinct identity and overcoming the feelings of guilt that something could have been done to prevent the “damage”. Finally we can witness the acceptance of the disabled person in this stunning description of the changelings’ splendor:
“Nothing under heaven could have had a more beautiful face… (but) he could not move so much as one joint… he was seldom seen to smile but if anyone called him fairy elf, he would frown and fix his eyes earnestly on those who said it, as if he would look them through.” (page 4, paragraph 4).

The descriptions of changelings documented way before and through the middle ages astoundingly fit many of the physical characteristics of a disabled child. “It is just possible that the wild dance of a changeling may in fact describe the movements of a person with severe athetoid cerebral palsy, where there is a predominance of involuntary movements. This is merely one of the examples she offers to prove the medical validity of her interpretation.
Unlike what the myth of the changeling proposes I was accepted ever since I was born and my parents did not undergo the process of grief that Schoon Eberly depicts. Yet I am aware that not everyone is as fortunate as I am. Eberly notes that in the pagan era the disabled were linked to the underworld and sometimes to a formidable divine power, suggesting the potential gifts of people with different abilities. Whether this is true or just another form of prejudice it is necessary for the non-disabled population to be aware that they might carry in their collective unconscious the weight of that belief when encountering someone with a disability. In my case, being in a wheelchair along with having a strong spiritual path has given me some supernatural or extra sensorial abilities such as “lucid dreaming”, an avid grasp of people’s emotional makeup at first glance, and a heightened sense of intuition. The peers I know who are in wheelchairs also possess a freedom of imagination that must be exploited and respected; their earned or inherent intuitive gifts should be cultivated. On the other hand, in these times there can be an immediate sense of admiration and distant respect for somebody that has a disability simply because they do; sanctifying people simply because they are in a wheelchair is another form of prejudice that allows the non-disabled person to contemplate us at a distance and prevent true inclusion. While this irrational form of praise can be unpleasant, pity and disgust are far more brutal forms of racism. Racism is a term that can no longer be applied on the basis of a certain skin color; it is at its very root any kind of categorization that is applied to people who share a physical, mental or social status that is seen as deficient. The repulsion that a non-disabled person may feel when encountering someone who drools a little or eats in a messy way may come from a very strong old urge to be part of a perfect race which can only include the strong, the beautiful, the brave. Intelligence is a desirable virtue as long as it is capable of serving society in a tangible, measurable way. Even great minds, like Plato and Aristotle were seduced by a longing for a perfect race. They held that :
“… infirm children should be done away with in order to further the rearing of the ideal man… midwives were… legally obliged to do away with those infants not recognized as truly human…only a healthy appearance guaranteed that it was.”
(Disability or Disobedience?, Poore, page 4, paragraph 2).
It saddens me to realize how much of modern medicine and science are invested in perfecting nature’s plan, tampering with the very substances that give us birth. Attempting to heal sickness is a worthy cause, but when this involves manipulating the way in which God or Chaos decides to bring life into the world it is a whimsical experiment to change the components of life itself just for the sake of beauty and the concern with preventing something that may be a blessing and not a curse. The implications that this manipulation of nature can have on our environment have already begun to show evidence that this could lead us to our destruction as a human race.
Today modern medicine is concentrating so much of its resources- human and economic, on “genetic medicine”. They are chasing after the gene behind Alzheimer’s, obesity, alcoholism, drug abuse, etc. etc, dissecting the human genome to offer a few and very rich elite the possibility of cures for diseases that are so often related to bad eating habits and emotional suffering. Instead, millions of children will continue to go hungry and die of easily curable diseases, because they are clearly not part of their idea of a superior race:
“Since the dawn of time, man has been trying to figure out how to procreate the “perfect” child—free of hereditary diseases, physical defects and internal imperfections. Now, more than ever, that urge still exists…. (Page 1, paragraph 1)
The Nazis believed that if any German citizens were diseased, were born physically or mentally disabled, or were part-Jewish, it was necessary to sterilize them to prevent further breeding (pg. 3, paragraph 2)”
(Human Eugenics: Whose Perception of Perfection, Parendi Mehta, page 1, paragraph 1)

The obsession to be absolutely free of sickness and deformity adds to the unconscious prejudice that a non-disabled person has toward someone that reminds them that nature itself is beyond the control of men. I suspect the need for racial cleansing comes from a very strong impulse to survive. Humans in their earliest incarnation coexisted with animals that were much stronger then they were. To survive they needed to use brutal force and a cunning intelligence. When they discovered it was easier to hunt and live in small communities there was more time for reflection, sweetness and luxury but in the beginning those with a physical deformity or disability probably died quickly. The reality that we needed to eat or be eaten is so engraved within us that we can get caught in valuing strength over softness, kindness, lightheartness and beauty. Later disability stopped becoming something supernatural and became a medical condition. This new scientific understanding had its advantages— disabled people were no longer seen as evil or as a people to be afraid of. In the future this could help them receive treatment to strengthen and relax their muscles and alleviate their pain. In the eighteenth century with the introduction of science a new form of prejudice emerged. Disabled people were linked indiscriminately with those that suffered from, a highly destructive degenerative disease. Psychopaths, autistic and disabled people were in the same category of people who “strayed from medical normalcy”.
Quoting David Pfeiffer, Dais reminds us, in his article Crips Strike Back, that normality is an ideology and a cultural illusion that is closely linked to our modern society:
David Pfeiffer writes that normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal”…. The use of the word normal in reference to physical bodies appears in English merely 150 years ago, coinciding with the birth of statistics and eugenics… The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand.
Crips Strike back: The Rise of Disability Studies Leonard J. Dais 5: 2 & 3

In Mexico I have experienced a form of prejudice when people in passing ask my dad, “poor thing, he’s sick, right?” The pity towards the disabled is the “sickness” of the non-disabled, i.e. their feelings of superiority and lack of connection with their own limitations. As a friend of my mom once told her, we all have a disability, the advantage that people in wheel chairs or any other kind of physical difference have over us is that their limitations are obviously visible and ours are not. The concept of normality is fuelled or created by a rigid concept of beauty- This narrowness of aesthetics related to the buying and selling of products is linked to a concept of what is attractive and acceptable by those countries who have economic power and influence. An example is that world-wide it is more usual to see white, blond babies announcing disposable diapers, even when they are being sold to an indigenous population.
Leonard J. Dais speaks of the importance of recuperating honesty when addressing the issue of disability. Terms like different abilities and wheelchair bound are a counter-producing effort to disguise or soften our physical condition. Like Dais I advocate that we should not use light terms to describe our disabilities. For me the goal is to get to the point where that limitation of movement becomes so transparent and irrelevant to who we are, that we do not need to constantly come up with new names to justify it.
Mark Mossman, in his essay Visible Disability in the College Classroom coins the term “super-crip” to mock the attitude that the normates never give us the opportunity of seeing us just like them. As soon as we do something that the non-disabled population would do, we become heroes. I have witnessed that when I get up to walk with my braces and people start applauding, assuming that it is a big effort. For me it is a time to exercise my body, and a pleasure. Also, when we excel in something that usually only normal people can do, we are not invited to the community of normals, we are thrown into exile by becoming heroes; super-crips!
The idea of the super-crip as with the stereotype of the sick makes our sexual identity denied until we find someone that is open enough to see past a dark, still hidden history of separation. To solve this it is important for the disabled community to provide more literature and information to help the general population bypass their prejudice. I found no scholarly articles regarding the issue of sexuality and disability. This compels me to research more deeply into the topic in a utopian dream so that one day disabled people are integrated as valuable actors in the movies, in commercials, and in any kind of job they wish to pursue, with the same possibility of being in a couple that a non-disabled person would have. Disability should be treated as a historical issue that has changed over time and it is as much of a racial and cultural struggle as the fight against aids, or gay-lesbian movement and gender equality. Once we treat disability as a cultural phenomena, disability studies could be integrated as a required study that might be placed in the branches of history, sociology and, or, cultural perspectives. This would imply not only a better world for the persons with a disability but also for anyone that in any way is outside of what society views as acceptable.

Wednesday, June 23, 2010

Bodies and imagined physical and emotional fragility


I was once invited to an Arts and Disability festival in Veracruz,called Encuentro Expresiones. It was awesome. Deaf actors told their story through sign language which was then partly translated into Spanish. The clarity and playfulness of the performers, their ability to transmit the essence of an emotion with a single expression and gesture, was astounding. There were also blind singers playing salsa and typical Mexican music -- they were so spirited the crowd was dancing and romping all over the place, and the band didn't miss a beat. Young men and women with down syndrome danced folkloric dances with a sincerity and tenderness that was palpable enough to melt a cynic. Jorge Font talked with impeccable eloquence on the journey of fulfillment through sacrifice -- the process of adjusting to a limited level of physical mobility after an accident and finding strength, independence, and the love of his life within that new beginning. He has been married for quite some time now, a proud father and a big inspiration to all of us. I read my poetry.

The most invigorating thing about the festival was the sharing of art, not to inspire pity compassion or charity in people, but simply to share ourselves with the world. I could make many interconnections between distinct disabilities, sharing sharing laughter, struggles, and information.


Lexi Luca, an extraordinary workshop leader who break dances on crutches elevating himself up and doing impossible twists with his arms and back, invited us to dance with him on the main stage. Below the stage there was a pretty sharp drop and a few feet below a little platform were actors could step onto the stage. Below that was the hard cobbleston ground and the tremendous roaring crowd. When it came time for me to do my solo dance I crawled on the stage floor after a little while of dancing in my wheelchair. I could see in peoples expressions a look of surprise.

I suspect that some people unconsciously assume that being in a wheelchair means being stuck in it twenty four seven. That varies depending on the person. People who don't know my level of mobility are often extra careful to offer their assistance when I am transferring from one chair to another or from a car seat into my wheelchair and even hold me when I say I can do it myself. When I lie sprawled on the grass reading a book often passersby look at my empty wheelchair with confusion and ask with a tone of grave concern " Are you Okay? Is everything all right?" When I say I'm reading in the sun or meditating I've noticed a faint smile of recognition dawning on their faces.

Sometimes when friends or acquaintances push my wheelchair or lower me into a pond or a pool of water a phrase I've heard is " Tell me if anything hurts" or more directly " I'm afraid to hurt you." They are often surprised when I get into the deep water and start swimming with ease into the distance. A friend of mine who is a physical therapist in Mexico admitted to me that when she first started working with people in wheelchairs she was afraid we were like porcelain cups that could shatter into a million pieces if we were not handled correctly. Now she finds the thought amusing. That's not to say that people in wheelchairs don't have serious limits in their mobility or sensitive spots but usually we are pretty confident about gaging our limits and asking for help when and how we need it. I accept the generous help and interest from fully mobile people in their quest to assist me and also ask them to be a little more trusting in our ability to verbalize our own needs.


I had suspected that some peoples assumptions about my fragility were quite strong but I wanted to do an experiment to test just how deeply rooted they were. So in the Lexi Luca dance I crawled to the edge of the stage as part of my dance and then allowed my body to gracefully slide down onto the second platform right below it. Then I crawled to the brink of that with a big smile on my face and poised myself there. Several hundred people were at the festival outdoors in a section of the market and suddenly it grew so quiet you could have heard a pin drop. Simultaneously people stood up and started dashing to the stage in a panic. I could hear voices shouting : "quick: he is going to fall! whats he going to do?"

One of the organizers of the conference admitted later that evening that he had to go the doctor and take some tranquilizers that night to recover from the shock. Just as the audience was about to grab hold of and "rescue me" I slipped out of their grasp and hoisted myself smoothly back on to the center of the main stage and continued to dance, visibly enjoying the music as if nothing had occurred. Several audience members asked me: "Did you intend to that? I answered somewhat obliquely in the hopes of engraving the question in their minds through the use of mystery."

Curiously enough my fellow dancers in wheelchairs or with disability didn't seem alarmed; they were smiling and enjoying the dance for its wackiness or artistic composition or busy rocking out to the music. javascript:void(0)My friend Manuel who has worked assisting me with some of my physical needs looked a little concerned but didn't rush in a frenzy to help.


The assumption of fragility can contribute to the idea that we are ethereal beings with very delicate bodies that could be hurt during sex. Who would have sex with a porcelain cup that could at any moment break into a million pieces? The few times in my life that I have had sex, more then once someone has asked: What if I hurt you? Am I too heavy? Slowly the women I was involved with grew more comfortable with following their impulses and trusting my ability to tell them if something was too much. Even then, I noticed, as with any relationship, it takes time to reach a balance of trust, confidence and mutual curiosity.

Another pattern at play is the perception that because I am in a wheelchair I am not only more fragile physically but emotionally as well. In other words the thought that if someone were to date me, have a relationship, and then break up with me they could hurt my feelings more because of the perceived extraordinary adversity often associated with disability.

My first serious girlfriend (now a friend) expressed a strong fear that if she left me I would be devastated and that my parents would resent her for it. I think gradually she came to realize the hurt I could experience was no lesser or greater than what a "normal" person would feel in a break up. Her initial certainty that she would be the one to break off the relationship when and if it happened also was revised as we deepened our bond. She could leave me, or I could leave her or it could be a mutual decision.


Have you noticed in airports, when someone in a wheelchair boards a plane and transfers to an aisle chair he or she is always strapped in? And not just strapped in - the amount of seat belt material around their torso waist and legs is enough to evoke the image of a convict chained on his way to prison. Do you know what I mean?