Required Reading

I just read yet another outstanding article by Pul Longmore entitled "Palin Talks About Special Needs Children, But Obama has Substantive Plans For All People With Disabilities". The article appeared in the Huffington Post October 4. Below is the link:

http://www.huffingtonpost.com/paul-k-longmore/palin-talks-about-special_b_131758.html

Here are some of the highlights worth noting:

Palin talks about being a friend of "special needs children". This is great but Longmore points out that 90% of Americans that have a disability are adults.

The McCain/Palin website has a single page about "Americans with Disabilities for McCain". The Obama/Biden website has detailed policy proposals and a comprehensive "Plan to Empower Americans with Disabilities".

Longmore provides excellent summaries of the McCain and Obama positions on health insurance, medicare, mental health parity, and community based personal assistance services. If you are undecided who to vote for or want to confirm why Obama is the logical choice disabled Americans I urge you to read Longmore's article.

On final point, Obama and Biden support the Community Choice Act, CCA, S. 799. At the national presidential forum on disability issues held last July McCain stated that such a law would cost to much and was the wrong kind of legislation. This is the sort of legislation that will some day have a profound impact on the life of Sarah Palin's son Trig. If Palin is indeed the friend and advocate of children with special needs a good way to demonstrate that would be to change McCain's position with regard to the CCA. Palin has done nothing that has impressed me but this sure would be a step in the right direction.

VP Debate and Disillusionment

I watched the debate between Biden and Palin from beginning to end. What a waste of time. Media hacks and the producers of Saturday Night Live did get what they fervently hoped for--a gaffe of historic proportions by Palin. For 90 minutes I saw two politicians put on act when I had expected a debate. I knew the format was made for TV sound bites and prevented the candidates from providing any answer in detail. Yet I hoped, as I always do, for answers that contained substance. I also hoped that the issue of disability rights would be raised but it was only mentioned once in passing. Gosh, I am hopelessly naive.

Over coffee this morning one thing struck me: the debate last night was not a debate. The moderator asked some good questions that were rarely if ever answered. Palin and Biden acknowledged the moderator question and quickly produced a statement that had nothing to do with what was asked. These pre-packaged and scripted replies have been uttered hundreds of times and were ever so safe. No emotion, feeling, or passion was evident. The end result was the debate was boring, devoid of meaning and a waste of time. This only highlights what I wrote yesterday--our political system and elected officials are a class apart unaware, unable, or unwilling to address the pressing issues that affect most Americans.

Palin Twists Words and We all Suffer the Consequences

Patricia Bauer has once again brought my attention to a news story that I missed. Apparently Palin was interviewed by conservative talk show host Hugh Hewitt. I am not familiar with Hewitt as I try to avoid listening to conservative radio programs. The transcript and full interview with Palin can be found at Hugh Hewitt's website. The interview and transcript are about what one would expect. Like Bauer, I was struck by Palin's answer to one question. Hewitt asked Palin about her pro-life and anti abortion views speculating that the birth of her son Trig was partially responsible for why the mainstream media hates her.

Palin's reply to Hewitt is hard to follow, misleading and highlights her extreme religious and conservative views. Palin stated this is "the most hurtful and nonsensical slap that we've been taking" referring to her pro-life position. Palin goes on to lament the fact that people "just don't understand" her decision give birth to Trig. For Palin this is ironic because she is trying to usher in a "culture of life" while her opponent Obama would not support a measure that would ban partial birth abortion. Palin thinks that Obama's position is "so far, far left its certainly out of the mainstream of America. To me, that is the extreme position, not my position of just wanting that the culture of life to be respected, and not wanting government to sanction the idea of ending life".

Like Palin, I too don't understand. I don't understand why she cannot separate her religious and political views. I don't understand how giving birth to her son Trig who has Down Syndrome instantly transformed her into an advocate for children with special needs. I don't understand why adults with Down Syndrome are stigmatized and often are forced to live in an institution. I don't understand why programs that could empower disabled people are objectionable to the Republican Party. I don't understand why the unemployment rate for people with a disability has been and remains about 70% I don't understand why Paralympic athletes are grossly underfunded. I don't understand why the Supreme Court has gutted the ADA. I don't understand why people have no clue what disability rights are but quickly acknowledge the civil rights of other minority groups.

Partisan politics are pointless, a fact that seems to have escaped the notice of both the McCain and Obama campaigns. There is much that needs to be done in this country given the dismal state of the economy. It is painfully obvious to me that the most vulnerable are truly suffering or simply worried about whether they can afford to heat their homes this winter. Like many others, I don't understand how we arrived at this juncture. How did so much of the wealth in this country end up in the hands of such a tiny minority of individuals. I for one blame Ronald Reagan and his pro-business anti-regulatory philosophy that has run amuck the last two decades. What is good for business is not necessarily good for the people of this country when giant corporations are run by CEOs that have no conception of ethics. Will any of this be discussed tonight when Biden and Palin square off with another? Not a chance and that is the fault of a deeply flawed electoral process that has enabled our elected officials to become a class apart who have no connection to the people that voted for them.

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.

A Duty to Die

About a week ago Baroness Mary Helen Warnock stated in an interview that people suffering from dementia have a duty to commit suicide. According to news reports, Warnock is called the "philosopher queen" and is regarded as Britain's leading moral philosopher. I think of her as the British version of Peter Singer, a person that would advocate the killing of a host of people.

I vowed last week I would not comment on Warnock. People like Warnock and Singer deeply upset me. I was really troubled by Warnock's interview with the Church of Scotland's Life and Work magazine where she stated: "If you're demented, you're wasting people's lives--your family's lives and you're wasting the resources of the National Health Service." This comment is offensive enough but when I read about another article in a Norwegian periodical entitled "A Duty to Die" I became even more incensed. Warnock suggests "There's nothing wrong with feeling you ought to do so [commit suicide] for the sake of others as well as yourself. In other contexts, sacrificing one's self for family would be considered good. I don't see what is so horrible about the motive of not wanting to be an increasing nuisance".

Warnock's views are not unusual. There are other prominent members of Britain's House of Lords that advocate euthanasia. The same can be said for some states in America--Oregon springs to mind quickly in terms of the euthanasia debate. What I find dangerous about people like Warnock and Singer is not necessarily their views. They have the right to state whatever they think just as I share the same right. What worries me is Warnock's academic position--that is her position carries a great deal of prestige. This prestige can give a certain moral and academic authority to their views that are not warranted in my estimation. Some bio-ethicists add a secondary veneer of legitimacy to the views of people like Warnock. Based on my experience, the only people that have the moral authority and personal knowledge to make life and death decisions are the those directly involved. Here I refer to the person whose life is nearing the end, doctors, family, clergy, and loved ones. Even under the best of circumstances end of life decisions are fraught with anxiety and uncertainty. How Warnock can make such questionable statements is beyond me. But I am glad she is not in the position to make any real decisions regarding life and death. Had she been in such a position when I was a child I may not exist today.

Stealthy Disability

Forty eight hours ago President Bush signed ADA Amendments Act that restored the protections of the ADA originally signed by his father in 1990. When the ADA was signed by the current President's father the ADA was considered to be a major advance in civil rights. I vividly recall when the ADA was passed. It was the lead story on many national news programs. I was thrilled and thought that I would share the same my civil rights as my fellow Americans that not disabled. As many know, the Supreme Court was not impressed and in decision after decision gutted the ADA. Fast forward almost twenty years and the ADA Amendment Act is now law designed to restore the intent of the original law. Is the passage of the ADA Amendment Act a success? I hope so but I have become hopelessly jaded. The ADA was ground breaking in 1990 but fell well short of my expectations. American society has remained resistant to change and I am still discriminated against on regular basis as are most disabled people. Why am I skeptical the ADA Amendments Act will make a difference? Much has to do with the reception it has received. Not a single news paper has covered the story. Not a word has been printed about it in the New York Times, Wall Street Journal or other national news papers. In fact I sincerely doubt any American has a clue as to what the ADA Amendment Act is or that it was signed by the President. I could not even find a story about the ADA Amendments Act on every obscure C-SPAN broadcast I get on my TV. So unlike 1990 I have absolutely no expectations the ADA Restoration Act will help disabled people in general or me in particular. I will soldier on with my advocacy and scholarship but I do so knowing the struggle for disability rights is an uphill and thankless battle. Grim thoughts from a gloomy and rainy Friday in New York.

Crippled People are Not Wanted

I read several disability related blogs on a daily basis. At the top of my blog reading list is Patricia E. Bauer, a journalist who posts entries on a daily basis. She provides links to stories about disability and in recent weeks has had several outstanding guest editorials by people such as Paul Longmore. This morning when I read her blog I saw a link to a local United Kingdom newspaper, the York Free Press. For those that have never been, York is a lovely city and many buildings are antiquated and architectural beauties. Visiting York is like stepping back in time which is both wonderful and difficult for disabled people.

The York Press article Bauer linked to was entitled "Disabled Access Vetoed" published September 23. This article reinforced two facts: first, churches in general are not welcoming architecturally or socially for people that use a wheelchair. Second, laws like the ADA exist because when one strips away all the polite talk about wheelchair access the reality is crippled people are an affront to the delicate sensibilities of those that can walk. There are of course many exceptions to my generalization but the story in the York Press highlights what far too many really think but are reticent to state--ramps are ugly, an architectural eye sore, and the presence of disabled people is unwanted.

According to the York Press, leaders of St. Olaves Church applied to the City of York Council to improve wheelchair access. Church officials have noticed an increasing number of people that use a wheelchair worship at the church. Wheelchair access to the Church is limited if not dangerous. Based on the news report I read a temporary ramp is put in place when someone using a wheelchair wants to enter or exit the building. The Church proposed to modify an entrance to improve wheelchair access. This request was turned down because "the scheme results in a loss of character and appearance... and would be detrimental to its historic, visual, and architectural interest and would weaken the relationship of the church with the wider conservation area".

My interpretation of this news report is basic: if a person can walk they are welcome. If a person uses a wheelchair their presence is not wanted. What makes this story interesting is the blunt statement by the City of York Council. The primary industry of York is tourism and tourists do not want to see a ramp. Afterall, in America those damn ramps are everywhere. Tourists in York want to see cobble stones, ancient steps, thatched roofs, and archetypical historic buildings and churches. Wheelchair access and the people who use wheelchairs spoil the image the city wants to project.

The belief that wheelchair access is objectionable aesthetically is not limited to York. I have been told many times that wheelchair access is limited, inferior in my estimation, because it is visually unappealing. This viewpoint is an architectural and social problem. Based on my experience, architects do not value wheelchair access. In the United States wheelchair access is included in new construction and exists because it is legally required. However, wheelchair access is far too often an after thought and located in an area where it is unseen and hopefully unused. The letter of the law is adhered to but its intent, equal access for people that use a wheelchair, is not.

If readers think my views are too jaded let me relay one story from when my son was little. At my son's pubic elementary school there was one curb cut that provided access to the building. Like other parents, I faithfully attended the school open house held every fall. For five years in a row, grades first to fifth, when I tried to enter the building the single curb cut was always blocked by a park car (the curb cut was clearly marked by blue paint). I thus had to ask another parent to enter the building, find the principal and have her make an announcement that such and such a car was blocking the only curb cut. I was stuck waiting outside until the driver came to move their car (none ever muttered an apology). After the third time this happened I suggested to the principal that the curb cut needed to be marked more clearly. I suggested the entire curb cut itself be painted blue, that is make it painfully obvious where the curb cut was located. The principal turned her nose up at this suggestion stating that a brightly painted curb cut would be really "ugly" and detract from the school entrance. She also stated she did not mind making the announcement that the curb cut was blocked and noted that I did not have to wait outside too long.

The point of the above story is that architecture is only part of the problem people who use a wheelchair encounter. I was stunned by the principal's attitude and inability to grasp the larger significance of the problem. Surely a well educated person whose job is to set the tone for an entire school should be more socially astute. Then it hit me--the principal was indeed setting the tone for the school. She did not value wheelchair access, assumed I was socially inferior and lacked social standing in the community. The school had met the legal requirements for wheelchair access and utterly failed at the same time.

I am not sure which action bothers me the most--the City of York Council blatant statement that people who use a wheelchair are not welcome or the principal at my son's elementary school. The City of York Council viewpoint may be objectionable but at least I know where I stand. In contrast, the principal at my son's school is forced to follow the law with regard to wheelchair access but does not grasp the intent of the ADA, a law that was passed almost 20 years ago. In both instances I cannot help but conclude my presence is not wanted and that I have a long way to go before my civil rights will be acknowledged.