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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: http://www.huffingtonpost.com/richard-c-senelick-md/joshua-prager-ted-talk_b_3839547.html  Senelick is a prolific writer,  has his own website, richardsenelick.com, 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 http://www.huffingtonpost.com/joshua-prager/ted-talk_b_3839143.html 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. 

3 comments:

Julie H. Rose said...

Thank you. Great post. This is a good point:
"I perceive Prager to be lucky in having an incomplete injury." Americans can not acknowledge the part luck plays in life.

You made me laugh with this: "Prager, as all TED Talk speakers do, had a great story to tell. And like all Ted Talks speakers Prager was photogenic."
Though, frankly, it isn't that funny. This society is all about appearances above all else as we are taught we are but commodities to one another.

I just started reading your blog today. I am putting some books aside to read more. Cheers to you!

william Peace said...

Julie, Thanks for the kind words. Luck is a giant factor in life. And you are correct we Americans hate to admit this. I am sure Prager does not feel "lucky". I cannot recommend breaking one's neck and experiencing a SCI.
TED Talks and TEDMED are impressive. I was able to attend a TEDMED event in Washington DC thanks to a scholarship provided by the HAstings Center. I was extremely impressed when I attended. However as time has passed I have another dominant thought: these meetings are corporate connecting. This is fine but the talks are too polished and it makes me wonder about the aims of TEDMED. It is no accident all the speakers are photogenic.

Middle Child said...

I think in a way Don and i were lucky - When we met in the early 70's both of us were alike in that we had no plans at all. Work was easy to find, places cheap to rent and we had a lot of leisure time without TV etc. We planned our kids but we didn't have aspirations, nor tick boxes as so many seem to do these days. We just lived each day - Both of us well read and self educated, so I guess to some people we might have been seen as unambitious. But the 70's for some of us were sort of like that. For us after Don's accident in 1982 - it probably was about the best time in Australia to have that accident... because apart from a few people there seemed to be an attitude of rehabilitation and not so much on the almighty cure. Attitudes have hardened greatly since then. As you know it is one hell of a bad time especially in the early years - and bad things happened or were done at times but sadly we felt that that got worse as time passed. For us it was a gentler place then. And yes someone getting up and walking - impossible for the likes of Don who was complete - people would push things at us...an if we were unwilling to listen which we usually were there was the feeling that we didn't want to get better or we weren't trying hard enough...Thank you for your posts - it is always good to read yours because you express how I feel and how it was for Don and us really