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Friday, June 11, 2010

Anger: Political and Crippled

There is a fascinating article in the Washington Post dated June 9. The article by Dana Milbank, "Nancy Pelosi, the Liberal House Speaker, is Heckled by Liberals", is a mixture of astute political observation, rhetoric and ignorance in terms of disability issues. Those that follow disability rights will know I am referring to an ADAPT protest that briefly made the news early this week. ADPAT hit the news because they loudly heckled Nancy Pelosi. The news coverage was superficial at best--filler on a slow news day. In contrast, Milbank's article struck a chord with me. In her estimation, the ADPAT protest was the culmination of 17 months of anger that has been building against Obama. Who is angry with Obama? Why liberals of course who have collectively decided to "eat their own", specifically the "celebrated San Francisco liberal" Nancy Pelosi. Who are the angriest group of liberals? Yes, we crippled people are angry, very angry. In fact we are filled with rage! That's right the ADPAT protest was not about reason or politics but rage. A "wheelchair-bound woman named Carrie James" is singled out as your archetypical angry cripple. James screamed from her table with 15 other people "Our homes, not nursing homes". The protesters all wore orange t-shirts that proclaimed the "Community Choice Act Now" and had the audacity to unfurl bed sheet banners. In response Pelosi's body guards rushed forward and formed a protective ring around her. Pelosi refused to stop her speech and for "an excruciating half-hour. The hecklers screamed themselves hoarse, dominating Pelosi's speech through her concluding lines".

According to Milbank, some political movements unravel gradually but the ADAPT protest was proof positive that "Obama's hope-and-change left has faded" while conservative political movements such as the Tea Party are gaining popularity. I have no idea if Milbank's assessment is correct. If I am any indication, she may be right. I am disillusioned with Obama penchant to compromise, compromise and compromise some more characterized by some as "split the baby politics". Regardless, what fascinated me about Milbank's article was the way the ADAPT protesters were described and the reaction to their protest. ADAPT is angry, protesters filled with rage, absent of reason. They could not be reasoned with. Some audience members tried to get ADAPT to quiet down--an effort that only "worsened the disturbance". Apparently this caused James, the "wheelchair-bound" woman to shout louder because "the stakes are a little high". James is described as "pumping her fists into the air, she chanted "Hey, hey, ho, ho nursing homes have got to go!". The conference organizer, Robert Borosage, "shaking his head and licking his lips, tried to shoo the wheelchairs away from the podium". Clearly, ADPAT was an unwanted presence.

Missing from Milbank's article, aside from any semblance of political balance, is a basic understanding of ADAPT or why they are protesting. Pelosi, like Obama (I think), supports the Community Choice Act. Readers know this act will increase access to community services for people with disabilities designed to allow them to live at home thereby ending the institutional bias toward nursing home care. The CCA is legislation that is "long-languishing". Are some members of ADAPT angry? You bet they are. And I would quickly add they have every right to be angry. Obama and Pelosi support the CCA in name only. Hell will freeze over before they forcefully push this much needed legislation forward. This bothers me but what bothers me is more is the stereotype Milbank seemed to rely on. Here I refer to the notion that all people with a disability are angry. In the olden days this was referred to as a "cripple's disposition". What is over looked is why people with a disability are mad. The popular misconception is that we crippled people are mad because we have a disability, some sort of horrible physical deficit. This could not be farther from the truth. The reality is anger, crippled anger, stems from just one thing--social injustice. Social injustice takes many forms foremost among them blatant discrimination. Ad in a dose of stigma, economic deprivation, a stunningly high unemployment rate, and barriers to education and I maintain crippled people have every right to be angry. However, this is not discussed much less acknowledged. 20 years after the passage of the ADA American society has continued to categorically refuse to negotiate or accommodate our difference. This refusal is worthy of detailed discussion. As James pointed out the stakes are high and lives are at stake. Many have already died and countless others have suffered. Am I being melodramatic? In a word, no. If you doubt me go for a drive this summer. The odds are good that at some point you will pass a shuttered institution that dots the American landscape. Once upon a time thousands of people with disabilities were ware-housed in such places, led a compromised life, barred from society. We no longer institutionalize people with a disability but that does not mean we are equal. If that were the case we would not lead civil rights legislation like the ADA. More personally if people with a disability were equal I would not feel estranged from society. In part this is why I am angry, an anger that is well placed and misunderstood.

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.

Monday, June 7, 2010

Canoe and Kayak Screw Up--Sortof

BIRTHRIGHT from Sean Mullens on Vimeo.

It is kayak season. I try and get out on the water on a weekly basis. I am not always successful but really do my best. Paddling is great for my sometime cranky shoulders that are showing wear and tear after 30 years of pushing a wheelchair. I also like to paddle because it makes me very happy. I feel free when I am on the water and at peace with the world. I enjoy gazing at aquatic life both above and below the water. I am not fast by any means but I can go a long way--miles and miles, a fact that puts a smile on my face. While I return to certain paddle spots because I like them I also return to some places because I know help is present. Getting a 14 foot kayak on and off my car is not easy. I can do it independently but it takes a long time and is very tiring. Hence I like to paddle with my son (I exploit his height, strength, and bipedal ability) or put my boat in where assistance is readily available. New places to put in however always intrigue me. Luckily I live near the Hudson River Estuary and there are many places I can easily access the water within an hour of my home. As part of my never ending search for new places to put in I subscribe to Canoe and Kayak. I read about new boats, technology, gear and exotic as well as ordinary places to paddle. It also helps that the American Canoe Association has a major commitment to adaptive paddling. They hold workshops for certified instructors every summer--and this is exactly how I got started.

Given the above I was delighted and then annoyed to read in the current issue of Canoe and Kayak "Behind the Scenes of Birthright". Look at the short five minute film for yourself embedded above. What annoyed me was the tone of the Canoe and Kayak story about the film and the sole character Michael Mitchell, 49 who has been paralyzed thirty years. In the estimation of Canoe and Kayak the film Birthright is about "one man's extraordinary struggle" and "never has a paddling film evoked such eye-watering emotion". The camera focuses on "Mitchell's excruciating effort to drag himself and his wave ski to the waters edge". The filmmaker sets up the viewer for a "rush of emotion when Mitchell finally catches a wave and accelerates down the face. For that fleeting moment he's completely free". Oh please spare me the tear jerking hyper emotional crap. Is it a struggle for a paralyzed person to get a boat in the water independently? You bet it is. So what. That so called struggle does not make me or Mitchell extraordinary. What we share to borrow the title of the film is the breathtaking feeling once we are on the water. If anything is fleeting it is the social equality our boats empower us with. Such freedom is not present on land due to social barriers and prejudice.

This is what I wish Canoe and Kayak would write about: the real struggle involved for people with disabilities to get a boat on the water. This struggle takes place well before one sees the water. Adaptive paddling clinics despite the ACA's major commitment to inclusion are few and far between. This is problematic for two reasons: there are not enough trained instructors and one might need to drive many hours to attend a clinic (I drove over four hours to Vermont to attend a two day clinic). For most paralyzed people some sort of modification must be made in order to paddle a boat. These modifications need not be complex: for me it involved removing the existing seat and making a custom seat out of dry cell foam using lots and lots of duct tape. Adaptive clinics are in my estimation are the best way to learn in large part because water safety is of paramount importance and can never ever be dismissed. If one is lucky enough to take a adaptive paddling class the next problem is simply getting to the water--the film highlights this quite well. Virtually all paddling books are worthless--access is never mentioned. Many paddling organizations and their publications are of no help as well. For instance, the Hudson River Watertrail Association has published six editions of The Hudson River Water Trail Guide. There is no mention of wheelchair access in any edition. When I contacted the organization about this omission I was informed access information was too much work to include and no one was sure exactly what the term meant. So much for help. Another major problem is finding a paddle shop. Some shops I went to when I was looking to buy a boat were point blank rude to me--paralyzed people I was told more than once were an insurance liability. When I expressed an interest in a tour one paddle shop owner told me I was welcome but would be charged double because I represented a safety risk. Finally, boat companies and those businesses affiliated with the industry do little or nothing to promote adaptive paddling. I see many boats and gear specifically designed and marketed to women. Why not do the same for adaptive paddling? For instance I use a Hull-a-Vator made by Thule. This is a great rack for the car that makes independent loading of a boat possible. Many of Thule's ads for this rack are targeted to women. I would imagine a comparable ad with a paralyzed guy would not only sell but inspire others--others meaning other paralyzed people interested in paddling.

I suppose my criticism of Canoe and Kayak is naive--they will not sell magazines nor will they promote a knee jerk emotional response. But they would empower more people with a disability to get out and onto the water. In terms of adaptive sports paddling is a bargain. A boat can be purchased for well under $1,000 and the season in New York lasts from about April to mid October. Contrast that with adaptive skiing--a new rig costs at least $2,500 and upwards. The ski season is a mere three to four months long. I enjoy both sports but do not own a ski rig--they are just too expensive and I got more bang for my buck purchasing a boat. If you really want to know why I love to paddle watch the film Birthright. Do not think of the struggle to get to the water but rather the freedom the water offers. This sensation is universal to all paddlers.