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Wednesday, November 11, 2009

Anger Helps

In the Body Silent Robert Murphy wrote about two types of anger. The first, existential anger, involves a pervasive bitterness at one's fate. Existential anger fuels self hate and is tied to shame and guilt. I do not know any people with a disability that feel this sort of existential anger that is directed inward and is inherently self destructive. In contrast, I know many people without a disability that think all people with a disability are angry because of their physical disability. More than once I have been accused of having a "chip on my shoulder" or that it "always has to be about me". What these statements assume is that the problems I have, and obvious anger, is of my own making. But this is simply not the case. My anger does not stem from my inability to walk but the skewed social interaction, stigma, and fear placed on top of an existing physical deficit. This is a point most people in my experience don't grasp and gets me to the second type of anger, situational anger. I have lots of situational anger. Situational anger is why I consider myself a bad cripple. Simply put, situational anger is a personal reaction to a perceived injustice and a violation of one's civil rights. I am not angry because I cannot walk up the steps. I am angry because the law mandated a ramp be constructed and that law has been ignored for a decade. I am angry at the situation and needless physical barrier. I am equally angry when my civil rights are violated as when I try to vote or attend a sporting event without being harassed by strangers who object to my presence. Situational anger is very common because people with a disability are not valued and access is not a priority in this country. If people with a disability were truly valued the unemployment rate would not be near 70% nor would 67% of polling places be inaccessible to me.

To me, situational anger is good. Situational anger rejects commonly held stereotypes and involves asserting one's civil rights. I am all for this. And this is the best thing the disability rights movement has going for it. Interesting to me is that the people I encounter most willing or likely to become angry are not disabled themselves. Instead, the people I see become angry are parents of children with a disability. I wish I could figure out a way to forge a relationship with these angry parents because they have the ability to change our educational system, one that is profoundly flawed. Actually they are changing the way we educate children with a disability and by extension the way we perceive disability. Problems abound as does prejudicial attitudes, especially given the economy and tight school budgets. But I am hopeful because people, parents of children with a disability are fighting back and rejecting dominant socio-cultural norms. I know this to be true as I read editorials from all over the country and parents are asking why their kids with a disability do not have the same rights as others. For instance, in the Kansas City Star, hardly a radical newspaper, Lisa Cannady wrote about her experiences. On November 8, she wrote "Our Most Vulnerable People Deserve a Full Chance in Life". I quote:

"There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.
The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.
As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus."

Cannady is doing exactly what Robert Murphy wanted people with and without a disability to do: reject existential anger. Cannady is not angry her child has a disability, such anger would be counterproductive. She is angry with the prejudicial attitudes, needless obstacles, waiting lists and lack of value placed on educating students with disabilities. We have the power to change this and situational anger is one way to attack the problem. The real trick is not so much the anger involved but in getting society to see past the stereotype of disability as tragedy. As of today society is unwilling to understand why people with a disability are angry but with more parents and bad cripples being produced every day the chances for change are increasing. So this morning I extend a hearty cheers to a mother in Kansas who I have never met but know she is on my side. What a great way to start the day.

Tuesday, November 10, 2009

Baby RB To Die: In My View the Inevitable Outcome

Baby RB will die. I fully expected this result but not the way it came about. According to British news outlets Baby RB's father withdrew his opposition to have life support removed. This took place one day after Andrew Bush, professor of pediatric respirology at Imperial College London testified that a mother's wishes should outweigh those of a father. Based on my understanding of the case via news sources, the pop psychology presented by Dr. Bush sealed Baby RB's fate. If this was not troubling enough, the words of the judge, Justice McFarlane, made it clear that Baby RB had no chance. And if you ask me Baby RB was never given an unbiased chance to survive. Once one gets past the superlatives heaped upon the parents involved, tears shed, clothes worn, and digs deeper the Judges words are sobering. In Justice McFarlane's estimation: "It is appropriate for me to say one or two words, not in judgement, but in endorsement of this sad but in my view inevitable outcome. It is I suspect impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents. In one moment all of the hopes and dreams that they will have had for their expected baby will have been dashed and replaced with a life characterized by worry, stress, exhaustion, confusion and no doubt great sadness."

Clearly Justice McFarlane accepted the views of the "experts" that considered Baby RB's life a sad and pitiful existence. Is this assessment correct? I have no idea. But what I do know is that Justice McFarlane was unable or unwilling to accept that life with a severe disability does inevitably lead to a miserable life. It is as though Justice McFarlane took a page out of an old book, one which assumed a medical model of disability was gospel truth. In this book the doctor is always right (mothers too according to Dr. Bush) and life with a disability is bad--very bad. But why is life with a disability bad? This is the question that Justice McFarlane and many others conveniently ignore. The negative perception of disability is not based on science but rather on society's fear of life with a disability. Sure we build ramps, care for crippled kids and we do this out of the kindness of our heart. What society does not want acknowledge is the most basic need of people with or without a disability--the quest for our very humanity. Baby RB will be killed with kindness by two loving parents lauded by a judge. Baby RB had no chance--our cultural system never valued his existence. By extension, society does not value the presence of any person with a disability. I know this to be true because I have faced bigotry and ignorance for decades. The problems I encounter have nothing to do with my inability to walk but the societal bigotry placed on top of my physical deficit. This is the real issue, one that has not changed much since I was paralyzed 30 years ago or in the 19 years since the ADA was passed. My views are harsh but reinforced by ignorant comments, the utter lack of access, and simple refusal to negotiate difference. Thus in contrast to what others think when I see a person with a disability I see a hard assed survivor. Someone that has learned how to adapt and overcome a hostile social environment. A person that leaves their home with the knowledge they will encounter bigotry, be an unwanted presence yet asserts their most basic human rights. If there is anything sad about the case of Baby RB it that he was not given a chance. But then Baby RB has a lot of company--too many people with a disability are never given a chance or confront a system that prevents them from succeeding.