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Friday, May 14, 2010

Becoming a Social Butterfly

I am not the most social person in the world. When I mentioned this to my son he laughed out loud and said "Dad, you are not social, you are anti-social and don't like people". It was my turn to laugh and admit my son was correct. I do not like to socialize and do my best to avoid groups of people. I will also admit there are many people I meet and must interact with that I do not like. The reason I am "anti-social" in my son's estimation are personal a practical. I struggle to keep up in groups--my mind does not work fast enough to enjoy much less participate in conversations. It does not help that much of the conversation takes place about two feet above my head and I miss much of what is said. But truth be told, I much prefer the company of one or two other people. When invited to parties or conferences I routinely turn down such opportunities. This has me wondering why I am thinking about attending a large event. Here I refer to the Disability Power and Pride Gala Celebration to commemorate the 20th anniversary of the ADA to be held on July 26.

I had thought of having a small party on July 26 at my home. But virtually no one I know would appreciate the significance of the event. When I saw the announcement for the Disability Power and Pride Gala my first thought was that I would never go to such an event. This party is for rich and connected crippled people. It is held in Washington and surely must cost a fortune to attend. Afterall it is not a party but a gala. Galas are expensive. To confirm my prejudice I looked up how much tickets to the gala cost. Much to my chagrin they were $100 a seat. I figured the cost would be five to ten times higher. My next thought was that I could live with spending $100 for a ticket given the fact I would be surrounded by people that appreciate the significance of the ADA. What in the world is going on with me? Yes, $100 is a lot of money but not when compared to the cost of a ticket to a professional sporting event or show on Broadway in New York. I think spending $100 to attend a gala, not a party or celebration mind you, is reasonable. Thus I am impressed. The gala organizers are not looking to attract only rich crippled people as I mistakenly assumed. I also heard that the first Inaugural Ball held in 2009 was a big success. I spoke to a person that attended and saw clips of performances on You Tube. So, maybe I will go to the gala. Does this mean I am turning into a social butterfly? When I expressed this sentiment to my son he gave me a withering look of disdain only a teenager can deliver to a parent and said "Dad, for you becoming a social butterfly is just not going to happen--ever". Now those are fighting words. I think I may go just to shock my son.

Thursday, May 13, 2010

Being a Parent with a Disability

In about ten days I will be presenting a paper at a conference: Disability and Ethics Through the Life Cycle: Cases, Controversies & Finding Common Ground. The conference is at Union College and my paper is part of a session entitled "The Reproductive Years: Ethics and Disability". This will be my second conference in about a month--unusual for me. Given the subject matter of my upcoming talk, parenting with a disability, I have been rather retrospective. Personally I find it a shock that my son is a legal adult and will head off to college next Fall. How and when I wonder did he and I get so old. Academically, these thoughts have been mirrored by the knowledge the 20th anniversary of the ADA is upon us. Of course, this has not garnered much if any news in the mainstream media. Regardless, the fact the birth of my son and the passage of the ADA took place at roughly the same time has made me think about how the cultural perception of disability has changed in the last two decades.

The express purpose of the ADA was to “establish a clear and comprehensive prohibition of discrimination on the basis of disability”. For the first time in American history and in my life as a man with a disability I was awarded similar protections against discrimination that the Civil Rights Act of 1964 guaranteed others based on race, religion, and national origins. While the ADA theoretically made me equal and placed the law firmly on my side, American society did not suddenly accept people with disability. In fact I believe rampant discrimination against people with a disability is as common today as it was in 1990. What has changed is the sort of discrimination people with a disability encounter and this is indicative of two distinct eras in disability history—the pre and post ADA time periods, eras bisected by my son's birth. In brief, the discrimination people with a disability encountered prior to the passage of the ADA was blatant and destructive. An untold number of lives were destroyed. In the post ADA era discrimination is far more insidious and polite though no less destructive. Most agree discrimination against people with a disability is wrong but support services are grossly under funded and basic access remains problematic at best.

Progress in terms of disability rights has been made largely through the efforts of disability rights groups such as ADAPT, Disability Rights and Education Defense Fund, Not Dead Yet and others too numerous to mention. Today, people with a disability can boldly proclaim they are “disabled and proud”. I too am disabled and proud and my identity is closely tied to my disability in a positive manner. For this, I owe the disability rights movement a great debt. This pride and my background in anthropology, particularly my association with Robert Murphy, empowered me to understand and reject the stigma associated with using a wheelchair. Rejecting the overpowering presence of discrimination past and present is not easy. I still vividly recall the discrimination I experienced as the parent of a new-born child circa 1992. Strangers blatantly questioned my ability to father a child. Every time I went out with my son a person would inevitably ask “Are you the biological father?. Others questioned my ability to and care for a child and more than one pediatrician grilled me on how I physically cared for my son. This sort of bigotry was a constant theme that I encountered.

At the time my son was born I was flagrantly violating social norms associated with disability: I was highly educated, articulate, employed, married, and a father. None of these ordinary life experiences were or are associated with disability despite the fact there are an estimated 8 million families that include a parent with a disability. But fatherhood made me stand out (pun intended). As a parent, I suddenly became public property. Anonymity was not possible. Strangers, friends, family, and all those I encountered had an opinion about my ability to parent and care for a child. No one hesitated to express their opinion and the questions directed at me were stunning. I was shocked by my loss of privacy and the utter lack of trust in my ability to care for another human being. The message sent via this constant assault on my abilities was crystal clear: paralyzed people such as myself were not parental material. My disability precluded parenting a child.

The assumption paralyzed people could not become parents was wrong. It also affects a larger number of people. According to the Brain & approximately 12,000 spinal cord injuries occur a year. Although exact figures are hard to determine, it is estimated that between 229,000 and 306,000 people live much of their life with a spinal cord injury. Most of these people (80%) are men who are of age when they can expect to become a parent. In terms of parenting, spinal cord injury affects both men and women. Following a spinal cord injury women may become amenorrheic for up to a year. However, once their cycle returns to normal they can conceive and bear children. The birth rate among those women with a spinal cord injury is very similar to the general female population. In contrast to the normal fertility experienced by women with spinal cord injury, most men experience fertility impairments. These impairments range widely from erectile and ejaculatory dysfunction to poor semen motility. Some within the medical profession maintain fertility impairments alone account for the fact that only 1% of men with a spinal cord injury father a child. I maintain the reasons why men with a spinal cord injury do not become fathers is more social than medical. According to the medical literature 95% of paralyzed men produce semen. With access to rudimentary reproductive technology these men can become fathers. The disparity between the aforementioned statistics reveals a profound cultural prejudice exists: men who are paralyzed are not expected to become parents. The reason why this false assumption still exists is perplexing. It highlights that what laws such as the ADA state and cultural reality are very different. Sure, we paralyzed people are equal in the eyes of the court but that is not nor has ever been reflected in my experiences as a man and father. Why I wonder has progress for disability rights been glacially slow? This is a question that has kept me up many a night and for which I have no ready or simple answer. What I do know is that the disability prejudice I encounter drives me. I fight back for myself and others in the hope that someday people will see paralysis as nothing more than a practical problem, one that has a myriad of well established solutions.