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Wednesday, October 1, 2008

Symbiosis: A Biological and Social Failure

I do not watch any morning TV programs in spite of the fact I am an early riser. I find such shows painful. The sunny disposition of the hosts annoys me as does the vacuous nature of the program content. Please take this into consideration when you read what I am about to write as I am hopelessly biased.

On September 29 the Today Show with Hoda Kotb and Kathy Lee Gifford had an "inspiring" segment and "touching" story about Lance Carr. In a telephone interview Kotb and Gifford informed Carr he was the first person chosen to be featured on their "Everyone Has a Story" series. I knew this segment would be a simplistic tear jerker and the depths to which the story fell in this regard was as expected. Gifford teared up multiple times during the interview and hit a particularly low low when she stated "He [Lance Carr] suffers everyday in ways we cannot fathom. This just kills you: He says he has never held a loved one in his arms in his life". When the interview with Carr ended Gifford asked "Could I have a kleenex, please?" Oh, please spare me this trite melodrama.

This is what went through my mind during the interview: Why would Carr seek to demean himself and his family by appearing on the Today Show? Why is Carr utterly dependent on his father to provide basic care for his activities of daily living? Why was Carr's father forced to leave his hospital bed against medical advice to care for his son? Why has Carr never been on an airplane and why did he expect his flight to be tough? Most importantly, why did Kotb and Gifford not ask Carr about his employment suit?

Carr's life is of interest but not for any of the reasons Kotb and Gifford expressed. What struck me was the sappy tone of Carr's letter that led the Today Show to pick him as the "winner" for the segment "Everyone Has a Story". I need not quote this letter as it emphasizes the fact Carr's father is a "hidden hero". This focus infuriated me. It also reinforced that society has refused to consider disability from a civil rights perspective. It is much easier, and cheaper, to laud heroes and quickly forget them. Society does not want to waste its limited resources on empowering crippled people. When crippled people point out what is obvious, the gross violation of their civil rights, few notice and no one cares. Those that question the status quo are considered crippled narcissists; self-absorbed individuals who should be happy for a hand out. Society does not want uppity cripples. Society loves heroes that overcome individual obstacles and fail to recognize the real problem: bigotry.

The total disregard of disability rights never ceases to shock me. This has profound implications socially. For instance, Carr acknowledges that he is completely dependent upon his father. This dependence between father and son can only be characterized as symbiotic--as in a biological definition of the term: “a close, prolonged association between two or more different organisms of a species that may, but does not necessarily, benefit each member”. Carr's life in my view is a social tragedy as is his relationship with his father, one supported and encouraged by a society unwilling to accept the humanity of crippled people. As a parent, I admire and detest Carr's father. I admire his sacrifice but question why did it come to this? Where are the support services to empower disabled people. Where, I wonder, are people with a similar disability, who do not have the Carr familial support system? This highlights the mixed results of the ADA--some people have benefited but far too many end up in a nursing rotting away or dead.

It is easy for me to damn the Today Show and question the decisions made by the Carr family. The Carrs and the Today Show are hardly unique in failing to acknowledge legislative and societal initiatives in disability rights. To view disability from a civil rights perspective is out of the norm and I suspect my words will anger some people. I simply refuse to cater to the lowest common denominator and characterize the Carr's as remarkable human beings. I want people to think and act, to fight for their inherent human rights. Please think about this story and look past the superficial crap. Consider this: What social obstacle will Carr and his family encounter when they try to board an airplane? Will the Carrs be the very first person on and off the plane as is the norm? Will they be forced to wait hours for trained personnel to appear with an aisle chair so they can get off the plane? (this happens frequently). Will the only elevator in the terminal at LaGuardia be locked? Will a bus be available that has an operational wheelchair lift and bus driver that knows how to work it? Some how I doubt these routine social problems will be discussed on the Today Show. If Kotb and Gifford want to cover a real story they need only follow disabled people as they try to lead an ordinary life.


Don't know said...

I do not understand how you can believe you are qualified to pass judgment on this family considering you have never met them. Take digs at the institution of the Today Show and their pandering, but please don't spew your hate on these people you've never met. They don't deserve to stumble across this posting and read your criticism of their lives. They are good people doing the best they know how to do. It is a sad commentary that a young man cannot tell his father how much he appreciates the years of effort without criticism. Seems to me that you are the one that cannot see past his wheelchair.

william Peace said...

I am not passing judgment on this family nor do I hate them in any way. This is simply a cheap shot that badly misses the point. I object to the socio-political system that fails to support the civil rights of people with disabilities. I take digs at the Today Show because they pander to the lowest common denominator and seek to provoke an emotional response. It is far easier to incite emotion than it is thought and you have fallen for this tactic like many others.

Yes, the family in question is doing the best they can at great cost to two lives--two lives that should be rich and full and independent. I am the one seeing past the wheelchair and not being swayed by a tear jerker mentality. I see two individuals tied to one another when there is a social solution to their symbiotic relationship. That solution is the recognition of the human rights of all disabled people.

Terri said...

I struggle with this too. We have a lovely special school in our area. My daughter is at the regular school--not because of her stellar academic skills, but because I think she needs to be a part OF her community, not apart FROM it.

This is the path of most resistance and it shouldn't be that way. Inclusion should be a foregone conclusion for everyone--not as an educational program, as a life philosophy (then it wouldn't matter where she went to school!)

I am also very frustrated by a society that forces heroics on people with disabilities and their families rather than just enfolding and supporting all--automatically, not heroically.

If you think about it, as it is this family has dedicated themselves to helping their son live. If good supports had been--just routinely--available, who knows what projects or interests this family's considerable skills and drive could have achieved???

People who are lucky enough to have heroes handy will have wonderful stories to tell. Folks who have no bootstraps--for pulling themselves up--and no heroes nearby (or their hero dies or leaves or whatever) get left by the curb--often literally. It should not be so.

This young man has much to be grateful for and our society has much to answer for.

william Peace said...

Terri, I love your wording "inclusion should be a foregone conclusion". In the world I wish existed inclusion of all those that do not fit within the so-called "norm" would simply enhance all cultures. Instead, American society has a penchant and historic legacy of excluding disabled people. This continues in a more polite subtle way in schools, law, government, education and other key institutions.

I also appreciate your point that the Carr family life would be radically different had inclusion been valued. As I parent, I understand the difficult decisions the Carr family was forced to make as I would do anything to improve the quality of my son's life. What I question, like you, is why the Carr's had to make such difficult choices. Why cannot support services be in place, easy to access, and valued by the community? Until answers to these questions appear bills such as the Community Choice Act that could empower many will most likely not be passed into law. This is a social problem that I hope to see resolved in my lifetime.