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Saturday, August 31, 2013

TED Talk and Richard Senelick MD Miss the Point

I have been spending an increasing amount of time with clinicians. These men and women perplex me. On the one had, they are very smart, work hard, and are clearly dedicated to patient welfare. They truly want to do their best. I admire this. On the other hand, the majority of clinicians I meet are clueless when it comes to disability. Clueless not within the very narrow confines of medical care but rather with the larger social implications of life with a disability. Clinicians know they work within a medical model of disability and most are aware a social model of disability exists. This is I suppose progress but it is glacial at best. This morning I was thinking to myself, I am being too harsh. There is only so much a doctor can do and that there must be a way I can reach them. That is get them to understand what they suggest and reality for a person with a disability are two different things.  Then I read "Disabilities Can Teach Us How to Live" by Richard Senelick MD in the Huffington Post, and came away deeply depressed. See:  Senelick is a prolific writer,  has his own website,, and is the Medical Director at the Rehabilitation Institute of San Antonio (RIOSA). According to Senelick's website since he began working at RIOSA he has been on "a journey of advocacy and education for people with disabilities". When I read this I was not encouraged. I was just sad. I get a sense Senelick is skilled clinician but has no conception the world is a hostile place for people with a disability.

Let me add some provisos to my gloomy assessment of Senelick. I assume Senelick is a good clinician and advocate for his patients. I have not read any of Senelick's articles or books beyond what I accessed at his website. Perhaps his words in the Huffington Post article mentioned above were changed by an editor. Maybe he wrote in my estimation one questionable article and the corpus of his work is excellent. But based on this lone article I am not impressed.  Senelick was inspired to write the Huffington Post article after seeing a TED Talk by Joshua Prager. See I do not Prager's talk. I do not like Selenelick's resulting article. I object passages such as the following:

The truth is that many of the things that enrich and provide quality in our lives are the same for able-bodied individuals and for people with disabilities. But society doesn't see it that way. Many, if not most, people assume that someone with a severe disability couldn't possibly have the same dreams and aspirations that they do. Think about it. One minute Joshua Prager was able-bodied, strong and walking the streets of Jerusalem, yet in a millisecond he became a severely disabled form of his prior self. Did his dreams, aspirations and the things that brought him joy change? No, the dreams are there, but the ability to achieve them is impeded.

Senelick makes a good point--people with and without a disability have the same basic needs and aspirations. A family, a good job, a house, and friends. A casual reader will undoubtedly think the "ability" to achieve one's dreams are "impeded" by a physical deficit. Heavily implied is that Prager is inspiring because immediately after his spinal cord injury he was completely paralyzed and now can walk with a cane. I see nothing inspirational in this. I perceive Prager to be lucky in having an incomplete injury. I speculate cutting edge protocols were performed by EMS workers after his traumatic injury and that he had excellent rehabilitation. Inspirational is about the last word that would cross my mind. Prager, as all TED Talk speakers do, had a great story to tell. And like all Ted Talks speakers Prager was photogenic. 

Senelick went on to note that: 

If something happened to my wife, I suspect there is some woman out there who would meet me for a cup of coffee at Starbucks. Now, if I have a stroke, has the pool of women willing to have that cup of coffee narrowed? You bet it has. I may feel like the same person in my head, but my disability narrows my social opportunities. My peer group initially shows interest and then slowly disappears. 

Senelick is correct in stating in the days and weeks following a SCI people are surrounded by friends and family. But over time people fall by the wayside. This is too often an inevitable result of a SCI. Life post SCI simply takes a different direction. Rare is the person with a SCI that goes back to the job and home one had before an injury. The reasons for this can be simple or complex. The point here is life post injury is radically different in a multitude of ways. The primary reason this is the case s the social response to disability and ingrained social biases we do not as a people question. Senelick is also correct in stating "disability narrows social opportunities". We may live in a 23 year old post ADA world but access to mass transportation and accessible housing is problematic at best. Add in a heaping dose of stigma, flavor it with rampant unemployment and one acquires a new stigmatized identity. This has nothing to do with medical care or level of injury. This to me highlights what Senelick did not state: paralysis is primarily a social disease. And I am not referring to STDs.

One more quotation: Senelick states:

we all live for our future prospects. No matter how good our lives are at the moment, we like to think about our next vacation, when our book will be published, or something as simple as our plans with our children for the next weekend -- maybe the beach. Catastrophic injuries and illnesses may bring a sudden halt to an individual's or family's plans. Once the physical part of rehabilitation is complete, how do we provide a "prescription" that allows the person to make a successful transition into areas that give them future prospects? It is not always easy to align your future with your abilities.

I have the "prescription" Senelick seeks. Let us have a national discussion about the barriers people with a disability encounter. Let the next President of the United States in his inaugural address state by the end of his term he vows to insure every bus, train, plane, public school, university, work place, and voting location is 100% to all Americans with disabilities. Let this President state that there is merit to the disability rights slogan "nothing about us without us".  To this end, the President will be sure to appoint at least one person with a disability to every important branch of the government and committee in the Senate, House, and even the Supreme Court.  When I hear this sort of wildly ambitious Presidential address to the nation I will know I am equal to my bipedal peers. Sadly I doubt I will live long enough to hear such a speech. Indeed, I doubt my son's future grandchildren will hear such a speech. 

Friday, August 30, 2013

Martin Luther King I Have a Dream: But I Despair

Over the last week I have read quite a bit about Martin Luther King's famous speech "I Have a Dream". I listen to this speech at least once a year when I feel a sense of hopelessness overcoming me. King was a brilliant orator and I find his words moving at a very deep level that touches my soul. In recent days I wanted to write something about King but words have failed me. Thus I was delighted to read a great post by the Disability Rights Bastard. See:  He wrote that he weeps : 

when I re-read Dr. King’s speech. In particular, I weep reading passage:
“One hundred years later, the life of the Negro is still sadly crippled by the manacles of segregation and the chains of discrimination. One hundred years later, the Negro lives on a lonely island of poverty in the midst of a vast ocean of material prosperity. One hundred years later, the Negro is still languishing in the corners of American society and finds himself an exile in his own land. So we have come here today to dramatize an appalling condition.”
I weep because when I replace the word ‘disabled’ for ‘negro’ things are truly looking sad. Not just in the United States but in all the Western countries where I know disabled people – not to mention third world countries. In the intervening 50 years we truly have not come far when it comes to segregation, discrimination, poverty and misery for disabled people.
As a group we have poorer education than average, we have far poorer health (on top of our disability), we earn less money, we have a poorer social life and most importantly, we have much less access to things in our societies that others take for granted. Services are off limits for many disabled people. Stores, cinemas, museums, police stations, yes even hospitals are often off limits for those of us with different kinds of disabilities.

This eloquently highlights why at times I am overwhelmed with despair over the lives of people with disabilities. Of course no one will ever put a burning cross on my lawn and I do not expect to be assaulted simply because I use a wheelchair. But disability based discrimination is rampant and takes many forms. Discrimination can be blatant; for instance, a restaurant employee can tell me "no wheelchairs" or a stranger can approach me and tell me they would rather be dead than paralyzed. Subtle forms of discrimination I have experienced assume that I am physically incapable of performing mundane tasks or that I am both physically and cognitively disabled. While I am energized by my first week of class at Syracuse University, like the Disability Rights Bastard I am not optimistic. I am not optimistic for a particular reason: people with a disability are hopelessly splintered into competing and antagonistic groups. People who are blind I am told are divided between cain and guide dog users. When I write about the social implications of adaptive skiing or biking some in disability studies scoff at me and tell me I have a privileged body. People who are deaf refer to wheelchair users as the chrome police only interested in ramps and wheelchairs. This must change but I do not see this happening any time soon. In line with this thinking Disability Rights Bastard wrote:

For a long time I have wished that we could gather enough people to engage in a march on our respective capitals. That we could be enough people to form a crip pride parade and proudly display our natural diversity. Where the wheelchair users held signs about “standing up for your rights” where the blind were wearing t-shirts saying “Blind is beautiful” where the folks with learning disabilities shouted: “I know things that you will never learn” to the tune of the deaf singing songs of their freedom. However, I don’t have high hopes for any of that to happen. We are moving towards a world where it is survival of the fittest and where money talks. If anything we are heading for a cut-throat world where the so-called weak are going to be culled and there will be no room for individual differences.

The weak are already being culled. In fact the weak, the deformed, the crippled, the different are not even being born. My good friend and colleague Stephen Kuusisto wrote at Planet of the Blind about De Facto Eugenics. See: Kuusisto prefaced his comments with a long passage from Andrew Solomon's critically acclaimed book Not Far From the Tree. Much lip service is paid to the idea of choice. The myth in American culture is that we are free and independent thinkers. We are in charge of our own destiny. We are autonomous beings. This myth plays into much of what bioethicists write about. We value concepts such advance directives, informed consent, autonomy, and personhood. This is great in theory. But as Kuusisto points out a naivety exists. When a woman is given a prenatal diagnosis for Down Syndrome is she really given a choice? Theoretically a pregnant woman has the right to end or continue her pregnancy. Yet Kuusisto correctly observes "prescriptive abortion is the norm".  Last I checked nationally 93% of positive prenatal tests for Down Syndrome result in a terminated pregnancy. What if a woman chooses to bring a pregnancy to term? She is considered a religious fanatic or a contrarian that selfishly brings a person into existence who is not capable of making an economic contribution to society. Welcome to a brave new world. Kuusisto chilled me to the bone when he wrote "there is no need for Eugenic legislation in our current health care system" and that "radical decisions have already been made". Theses radical decisions are couched in dense academic prose by utilitarian philosophers such as Peter Singer and Julian Savulescu. Bioethics as a scholarly field seems to be enamored with utilitarian philosophers. I find this deeply troubling. So next October when I go to the American Society of Bioethics and Humanities meetings I will get to see and hear Julian Savulesco give a key note talk reserved for widely respected thinkers in the field. Yes, I will also hear Rosemarie Garland Thomsen give a talk as well but she is clearly on the B team in my estimation. The mere fact Savulescu was asked to speak and given the biggest platform humanly possible troubles me because as Kuusisto put it "radical decisions have already been made". Those radical decisions I know do not involve respect for my crippled body. Those decisions already made are a threat to me and all people with a disability. 

Thursday, August 29, 2013

Big Trouble: I Dare to Take on Inspiration Yet Again

All my life people have a penchant for giving me nicknames. In my teens one nickname stuck--trouble. I would enter a room and one friend would always remark in a slow drawl "Here Comes Trouble". With each word his voice would rise often prompting laughter. I suppose I was trouble in part because I had a penchant for asking a lot of questions. I simply did not believe what I heard or read. Then and now I do not accept the status quo--I question everything. Today I am going to do something that will get me in big trouble. I am going to take on the concept of inspirational. Whenever I deconstruct the larger meaning of inspirational or worse yet the cure industry associated with spinal cord injury, I know I am going to get slammed with email that borders on hateful. I am sorry but I sometimes cannot keep my mouth shut. Today is one of those days.

A story is spreading quickly in mainstream news outlets about a young paralyzed bride who walked down the aisle on her wedding day. Here are the bare bone facts. Stevie Beale married Jared VanAusdale earlier this month. Beale was paralyzed in a car crash in 2006 that killed her friend. After Beale became engaged months ago she began to focus on a single goal--walking down the aisle in her wedding dress. She accomplished this goal. There is no question Beale looked gorgeous on her wedding day. She succeeded in achieving her goal of walking down the aisle. After the couple exchanged vows videos on You Tube and multiple news outlets show Beale being carried by her husband in her wedding dress. This is through and through a Hollywood like production that the wedding industry capitalizes on. It is romantic in the extreme yet I refuse to provide a link to the videos that abound. I have no doubt most people who saw the short clip of the bride walking down the aisle were teary eyed. Beale and her husband are photogenic and attractive people. I wish them nothing but the best. I am happy for the couple and especially for Beale who set a goal and achieved it. 

Here comes the proverbial but: I do not like the videos or the way the mainstream news media has framed the story. My problem is not with Beale and her husband. Not at all. Instead I object to the way her wedding day is portrayed. The word inspiration is being used in virtually every story. I read headlines such as "An Inspirational Walk Down the Aisle" or "Beauty Exists" or "Dreams Come True" and cringe. To me Beale is no different that any bride. The way she moves down the aisle is meaningless to me.  The mainstream press however relies on an antiquated notion of paralysis and disempowers Beale. For example, wrote Beale was devastated by the death of her friend and paralysis. The story wen on to note "once a softball player, gymnastics teacher and soccer coach, she questioned what she would do with the rest of her life when the activities that had defined her were no longer physically possible". This is simply wrong and relies on ignorance. I am sure Beale's wondered what life would be like post SCI--all people do. But the idea sports or physical activities are no longer possible ignores the fact adaptive sports are equally enjoyable. Beale is quoted after her injury that she "thought I was doomed to my parents house, to never have a boyfriend, or never get married. I thought I was going to sit at home and rot away". I understand this concern. I had similar thoughts myself in 1978. But no one asks why? Why should any person who experiences a spinal cord  injury worry they will rot away? People rot away because society refuses to accommodate difference--in Beale's case using a wheelchair. Utterly lost is the fact American society remains hostile to the presence of people with a disability. A powerful troika prevents too many people like Beale post SCI from leading a rich and rewarding life: 1. A lack of accessible housing. 2. The lack of accessible mass transportation. 3. Rampant unemployment. To these three variables one can add stigma, social isolation, and the belief it is socially acceptable for a paralyzed person to spend the rest of their life feeling sorry for themselves.

The focus of the mainstream media was what I would expect: it is simply a feel good story. No real questions or issues were discussed that directly affect the lives of people who experience a SCI. Every story relied on an emotional reaction. Paralysis is considered to be an individual tragedy. I see no tragedy in paralysis--it is a physical deficit the vast majority of people adapt to over time. Of course no one wants to be paralyzed, myself included. And yes such an injury changes the direction of one's life. But so do many other life changing events. Think divorce, death of a parent, birth of a child, drug or alcohol abuse, employment or lack of employment etc. The real problem Beale and her husband will face are not glamorous and will likely never be discussed in a mainstream newspaper. The problems I am referring to are not sexy nor do they prompt an emotional reaction. Here I go back to my troika of a lack of housing, transportation, and employment. These issues require some real thought and a re-evaluation of disability in the broadest sense of the term.  Until disability rights and civil rights are assumed by all people to be one in the same stories such as Beale's will continue to be published. Such stories ignore the nitty gritty issues that are barriers for Beale who obviously wants to lead to a rich and full life. 

There is another  aspect of Beale's story that is inherently disempowering. Her husband is consistently portrayed as the reason she could walk down the aisle. In story after story it is noted Beale's husband "brought her back to life" and is well on his way to becoming a saint. What is assumed is that Beale's husband is a saint because he married a paralyzed woman. Only one story I read noted Beale did not meet her husband until well after she was paralyzed. Somehow Beale must have thrived on her own for years. In fact I am willing to bet she is a dynamic human being. Why else would a man ask to marry her? At the end of the day,  I find the entire story simplistic and misleading. Beale's interest in walking, based on what I have read, was restricted to walking down the aisle in a wedding dress. I get this. Many women put great thought into what they will wear on the day they will marry. But this is a very different matter. In fact what I found of great interest was what was not shown. Beale sitting in her wheelchair.  It made me think yet again that a wheelchair could be characterized as a portable social isolation device. And this my friends is the real problem.