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Thursday, June 10, 2010

Conjoined Twins, Disabilty and Ethics

Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger's book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger's book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics. Dreger's work successfully changed the archetypical story associated with conjoined twins and others with extraordinary human anatomies. She highlighted that the stories often told about people with unusual bodies involves changing that body to fit the social context. This led me to an "ah ha moment" that is all too rare in academics. The story of conjoined twins reveals a history of people who are comfortable with their own bodies. The problem is not with the unusual or disabled body but rather with society. Individuals have rights, human rights, and those rights for those who do not fit into a broad spectrum of normal are violated regularly. I know all too much about this as do others with a disability.

Dreger made me believe change is possible. For instance. she points out that progress made in treating those born with intersex conditions since the 1990s. While this is encouraging, I remain dismayed by the cultural perception of disability and how it seems impervious to significant change. Hence I thought of the Ashley Treatment--a child whose body was radically altered to fit society and its failure to accommodate people with profound cognitive and physical disabilities. I thought of the ADA and how twenty years after its passage access for all people with a disabilities remains a constant battle. I thought of ethicists in medicine who have a penchant for justifying treatments that are at best questionable or worse violate the bodily integrity of the most vulnerable among us. I thought of disability scholars who have largely failed to enhance the civil rights of people with a disability. I thought of disability activist that in spite of great effort are virtually invisible in mainstream news stories. I thought of people at risk--specifically the newborn, elderly, and those with a disability. These are hard times for such people, fearful times I would contend. In the words of Dreger: "In the United States, the values of individualism, self-improvement, free enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed, even expected--to employ medical technologies to alter one's anatomy and make it more socially advantageous".

Dreger's words were echoing in my brain when I read about Brianna Manns. Manns gave birth to conjoined twin boys on March 31, 2010. The boys cannot be separated because they share a single heart and have complicated anatomy. At issue is how much medical intervention is appropriate. Doctors have been clear they do want to see the twin boys suffer. Their mother, Brianna Manns, wants every effort to be made to extend the life of her children. According to Helen Kusi, a neonatalogist, "we empathize with her but as health care providers, knowing what we know, we don't want to see the babies die in an agonizing way. That's where we are not on the same page with her. We haven't given up, but we have to face reality". What prompted this statement was the refusal of the mother to sign a do not resuscitate order. Here we have a collision between two opposing world views. It is my understanding that the mother is deeply religious and thinks there is a reason God made special babies such as those she gave birth to. While I do not know any more than what I read in the news and on line it appears that Manns has been at odds with doctors for sometime. Doctors discussed terminating the pregnancy but Manns refused to do so. Doctors then maintained the twins were not likely to survive birth. Survive they did and Manns and the doctors charged with the care of her children remain at odds.

The above is an extreme case, one that will likely lead to great emotional angst for the mother and health care providers. I am sure medical ethicists will weigh in on what transpires as will many others. I sincerely hope not only have those involved read Dreger's work but have called her in to lend her expertise. To me, this case is but a sign of troubled times for those that do not conform to societal and medical norms. It is my belief that as our economy continues to falter and health care dollars are watched like a hawk all those that do not fit in will be perceived as a problem--an expensive problem that we can ill afford. Hence the media reports about how expensive it is to care for the elderly as they approach the end of their life or how much it costs to keep a person alive per day that is dependent upon a respirator. At no point do we read about the contributions the elderly make to society nor a word about the person that not only survives but thrives using a respirator. What is conveniently ignored are the social barriers to education, personal relationships, and community involvement. Instead, we create institutions to house and separate the unwanted or in the case above convince ourselves we do not want babies to suffer. The fact is society simply refuses to accommodate some bodies. I know all about this as my body is lacking socially and physically--I cannot walk, that is not in question. But my inability to walk should not preclude me from being an accepted member of society. Yet, my very existence in the estimation of many is an odious burden. I have been told point blank by utter strangers that they would "rather be dead than use a wheelchair". How I wonder can one think that something as insignificant as the inability to walk makes me so inferior, not worthy of life itself. I may have a physical deficit but that does not make me inferior to others. Thus I have no interest in changing my body to conform to what others expect. I need not be saved by science or technology but rather expect, demand really, that society accept me for the man I am. Afterall, I am as human as is any person with or without a disability.


Unknown said...

I've hit a point where I find myself sometimes looking at wheelchairs with frank envy. How much more could I do on bad days, if I had a way to get around that was motorized?

I guess I get to find out next month, when I get my mobility scooter. I have days when I'm torn about getting one, mostly due to the way ignorant and ableist people react to mobility aids, but I just have to remind myself of how much more I can do, how much better I might feel.

Maybe one of these days we'll get to a point where we think of disability and difference as variety instead of problem. We can hope and work towards that, eh?


william Peace said...

Kali, While most of American society perceives a wheelchair as the ultimate symbol of weakness and disability, people that actually use this adaptive device think it is liberating. I suspect you will despise the social reaction to using a wheelchair but be delighted by the freedom and independence it provides.
We have a long way to go but I am hopeful that within a few generations disability will not be perceived as a negative. I for one am working toward this goal.

Lyn said...

Me too. It's good that the wheelchair was invented so people could get around instead of sitting somewhere with a blanket over their legs looking sad.
If I ended up in a wheelchair I'd be happy to be alive and I'd go to Dir en grey concerts.
The attitudes about disability that exist now must DIE.