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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.


Claire said...

One big difference between issues of racial equality and disability equality is money. Whereas one must simply learn to accept someone's skin colour or place of origin, one must actually make (as in pay for) accommodations for physical challenges. As for the way you were treated as a parent, well, it's just ignorance in the truest sense of the word...and damn, people can be rude.

william Peace said...

Claire, Money is indeed a factor or an excuse. Most agree access is desirable but if it costs extra it is the first item cut from a budget. To me, this indicates it is still socially acceptable to be prejudiced against people with a disability.
The most bigoted environments I had to navigate raising my son were the medical and educational systems. My disability was always perceived to be a significant problem. The public schools my son attended presented significant physical barriers while MDs and those within the medical establishment were stunned a paralyzed man could be a father. Many openly questioned my ability to care for a child.

Liz said...

People seem to assume that my son must be *caring for me*... even though he's in elementary school!

william Peace said...

Liz, I can sure relate to your comment. I recall taking my son to the ER when he was about 1o years old and the doctor asked him if it was hard to take care of me! Now that my son is 18 and towers over me at 6' 2" people routinely speak to him as though I did not exist. He is exceptionally skilled at dealing with this and putting people in their place when displaying stunning ignorance. Ah, the joys of parenting with a disability.