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Saturday, June 25, 2011

Bitter Truth and Gritty Reality

A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:

"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".
It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.

The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?

Thursday, June 23, 2011

Grim News on Both Sides of the Atlantic

Every evening I look out my living room windows I consider myself an exceedingly lucky man. I have much to be thankful for. My life is rapidly resembling what it was before my wound last Fall. My son is home from college and we have spent some real quality time together. My family was and remains supportive. All this is quite unusual for a person with a disability. The ordinary is too often not possible for people with a disability. When I openly state this to others I know they look at me and roll their eyes. Come on they say, things are not that bad. They are correct. For me life is sweet. Life is not so sweet for my fellows with a disability. How do I know this? It does not take much thought on my part. Simply living life I come across needless obstacles large and small. I read about discrimination people with a disability encounter every day. For instance, a man was forced off an airplane by a pilot who deemed him a flight risk, a person with Down Syndrome was barred from boarding a flight, a couple being refused service in restaurant because they used wheelchairs, service dogs barred from schools, and the list of violations goes on and on. Little or nothing is done. Pilots get sent to sensitivity training, airlines are fined, and the cycle of civil rights violations endlessly repeats itself. Progress is a myth--or so I think on this gloomy day. I am gloomy not because of the weather but I have carefully read two well crafted and researched surveys. The results are troubling.

The surveys I refer to were conducted by Scope in the UK last May and the second by The ARC entitled "Still in the Shadows with Their Future Uncertain". Both surveys are readily available on line. Simply check out the Scope and ARC websites. The findings do not surprise me one iota.Let's start in the UK. According to Scope:

56% of people with a disability report they have experienced hostility, aggression, or violence from a stranger because of their impairment.
50% of people with a disability report experiencing weekly if not daily discrimination.
37% report people's attitude toward them have gotten worse over the past year.
41% of people without a a disability state they have never witnessed a person with a disability discriminated against.

The ARC survey is equally grim.

Fewer than one third of students with developmental or intellectual disabilities are fully included in regular classrooms in regular schools.
58% of parents report spending more than 40 hours per week providing support for their loved one.
46% of parents report that they have more care giving responsibilities than they can handle.
88% of parents report that they are suffering from physical fatigue, emotional stress, and guilt.
1 of 5 families report that someone in the family had to quit their job to stay at home to support the needs of their family member.
75% o families cannot afford or find after school activities, home care providers, or respite care.
62% of families report services utilized have been cut or eliminated.
43% of families report that schools have cut back on services.
32% of families report they are on the waiting list for government funded services with an average wait of more than five years.
A conservative estimate is that there are more than 1 million people waiting for services that will most likely never come.

I could provide many more on statistics but the above should suffice. Yes, the economy has affected the rich and poor in the the UK and USA. But I think these figures demonstrate a disproportionate number of people with disabilities, especially those with cognitive disabilities, have been profoundly hurt. Where I wonder is the outrage? We saw it spill over into the streets of London last month. Here in the USA the assault on disability support services does not even merit a spot on the national news or blurb in the newspaper. What is most troubling to me is that things are going to get far worse before they get better. Republicans led by Paul Ryan propose to cut more than $770 billion over the next ten years from the Medicaid program. Nationally, more than 700,000 people with cognitive disabilities are living with caregivers who are 60 years or older. Worse yet 73% of families report they do not have adequate savings for retirement.

Yes, the statistics are grim indeed. Beyond the numbers, even if you fudge them, what deeply bothers me is the most basic: no one cares. My neighbors do not care. Institutions do not care. I care. I care a lot. I lost sleep thinking about these surveys last night. The power went out for a while and I feared for the future. I feared not for myself but others--others I know who are socially and economically isolated. Who speaks for them? Who protects them? Our government? Do not make me laugh. Our so called representatives are a class apart from those that elect them to office. Sorry but I cannot provide any positive spin on the above. Grim, grim, grim.

Wednesday, June 22, 2011

Catching up: Me and Roy Campanella

Wow, it has been a while since I have put up a post. No bad news to report here. I am just delighted to slowly be getting my life back. I am sitting up more and more each day. I am doing more each day. Things that were once a chore are now a delight. This week I did a major expedition to the grocery store. The first time I have done this mundane chore since September. My timing is perfect as my son is home from college and eating me out of house and home. No human can eat as much as a hungry 19 year old male. I am also getting out on the water--yes, I have been kayaking twice. I re outfitted the interior of my boat with mixed results. The good news is my skin is exceptionally well padded. The bad news is sitting on a roho cushion has severely limited my lateral stability. Skin cares comes first so I am hoping to adapt.

Speaking of adapting, I read a new biography about the life of Roy Campanella. Campanella was among the first black men to break the color barrier in baseball. The history of baseball, particularly integration, has always fascinated me. I have the utmost respect for the men that endured the grossest forms of bigotry to integrate baseball. How men such as Jackie Robison endured the abuse he took is beyond my comprehension. He was far from alone however. In fact, as the biography of Campanella points out there was a very good chance Campanella and not Robinson could have been the first black player in the major leagues. As much a this history is of interest to me I read the book for two reasons: to learn more about the relationship between Campanella and Robison, secondly, to learn about Campanella's post baseball life as a C 5-6 quadriplegic circa 1958. The book in question, Campy: The Two LIves of Roy Campanella by Neil Lanctot, will be of great interest to baseball historians. More than any other author to date he delves into the rocky relationship between Jackie Robinson and Campanella. This contribution is counter balanced by the poorly done chapters on Campenalla's spinal cord injury in a car crash and his life as a paralyzed man. This is a small part of the book (just three chapters of twenty) but undermines the solid scholarship that preceded it. The author, Lanctot, is a baseball historian and has written a previous book about negro league baseball. Thus to be fair he likely knows nothing about disability history. It appears as if his history of disability was limited to rehabilitation, specifically Howard Rusk and the famed Rusk Institute where Campanella was treated after his injury. The lack of attention to contextualizing Campanella's injury is not just unfortunate but leaves the reader with the unmistakable impression that a spinal cord injury is the worst possible thing that could happen to a human being. I certainly do not recommend the experience but what is ignored amid the obvious loss of movement is the social consequences of paralysis. This is where the author could have made an important contribution. Instead he accepted the dominant sociocultural belief--paralysis is a devastating physical injury. This is of course true but the real ramifications are social. Few if any people that walk can make this critically important leap in logic.

In the final three chapters of the biography of Campanella the author frames his spinal cord injury in an overwhelmingly negative tone. Negative even for a baseball book. Here are some examples:

"the almost superhuman recuperative powers that had brushed aside a blistered eye, dislocated thumb, and mangled hands now failed him. Hour after hour, he lay like a corpse, his legs useless, his arms could be extended but able to little else".

"He was what the doctors called a C5 C6 quadriplegic, an utterly dependent prisoner of the Stryker bed, with no control of his bowels or bladder".

"Just getting of the car into Salt Spray [his home]was an ordeal, involved a sliding board and the formidable hoisting skills of his now live in attendant".

"Outwardly, Roy appeared to be handling his plight rather admirably".

"Roy's triumphs--the TV shows, the benefit, the book--all helped keep the worrisome bad thoughts under control. But painful reminders of his past glories and current limitations were inescapable".

"The third Mrs. Campanella proved to be exactly what Roy needed. Thanks to her earlier nurse's training, she was unfazed by his quadriplegia and her attentiveness was nothing short of phenomenal".

"For all his undeniable mastery of the wheelchair he was still utterly dependent out of it. Each morning he began with a two hour ordeal of being lifted out of bed, bathed, shaved and dressed by an attendant whose devotion to the job was often suspect".

"Baseball, though a welcome respite as always, could only temporarily distract him from the day-to-day struggles of a quadriplegic's existence. His life remained limited to the bed or wheelchair, an especially cruel punishment for a man who had once loved nothing more than taking off at a moment's notice".

The above passages are only the most aggregious. I dislike critiquing authors for the books they did not write rather than for the book published. In this case I think the author missed a golden opportunity to delve into the history of disability. I do not expect it to be his focus but he does have the obligation as a historian to contextualize his work. He utterly failed to do this. Yes, he discussed Howard Rusk but did not bother to mention why Campanella never got a job in baseball, visited many stadiums that had no access at all and was often carried to his seat when he attended a game. Surely this compounded Campanella's perceived struggle. This struggle however was not with his body but rather society's failure to accommodate his difference. In this, Campanella shared much with his paralyzed peers who the author states he felt close to. But that is the extent of the analysis.

Maybe I am not being fair to the author--this is afterall a baseball book. But I think I have the right to offer my views as the sub title does refer to the so called "Two lives of Roy Campanella". It is this second life, one with paralysis that is exceptionally weak. It left me wondering what Campanella really struggled with--was it racism in baseball or paralysis. Obvious and striking parallels could have been made but were not. In short, to use a bad pun so rampantly used in sports, the author really missed the ball.