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Friday, September 26, 2008

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.

Thursday, September 25, 2008

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.

Tuesday, September 23, 2008

Sarah Palin Continues to Draw the Ire of Disability Rights Advocates

I have been critical of Sarah Palin as have many others familiar with disability rights. My concerns about Palin extend well beyond the issue of disability rights. For instance, I worry about the judgement of any person who suggests that creationism should be taught in the public school system as an alternative scientific theory to evolutionism. Even though I have serious reservations about her ability to separate Church and State, I am willing to accept her claim that she is a "friend" to those that have a disability. However, I do not accept Palin's statement that she is an advocate for disabled people or as she put it children with special needs. Since her selection as McCain's running mate I have read many editorials and comments about Palin. Much of what is written is mean spirited and reflects how nasty the Presidential campaign has become. Frankly, I am appalled by the recent decisions made by the Obama and McCain campaigns.

Not everyone in the disability rights community is willing to accept a wait and see attitude with regard to Palin's supposed advocacy. In fact, based on my reading the vast majority of disability rights advocates do not like Palin. Frankly I cannot blame them. Palin's track record with regard to disability is limited and her speech at the Republican convention focused on "special needs children", a condescending choice of words to all those familiar with disability rights. To me, Palin's use of the term "special needs" harkened back to the day when disabled people were sent to institutions, barred from public schools, and subjected to intense discrimination. I wonder to what degree Palin is aware of this history. Based on the Palin interviews I have seen I sincerely doubt she has a nuanced understanding of disability. This is why I think the notion she is or ever will be an advocate of disabled people is a pipe dream. I came to this conclusion after reading an editorial in the Columbus Dispatch today--here I refer to Deborah Kendrick's editorial "Being a Disability-Rights Advocate is far from Having an Afflicted Baby" published September 22. Kendrick, an advocate for people with disabilities, wrote:

Disability is my beat, and the blatant exploitation of a cute baby to support a promise that has captured the hearts and hopes of too many parents of kids with disabilities was an outrageous slap in the face of every genuine advocate.
We have had real advocates as leaders in our government and we'll have more, but simply giving birth to a baby given a diagnosis does not an advocate make. Baby Trig has a label: Down syndrome. Period. No one knows yet what his disabilities, physical or cognitive, will be. The chirpy governor hasn't a clue what it is to fight for a disabled child's education, weigh the pros and cons of surgeries, find speech therapists or navigate the cruel land mines of prejudice that are encountered on playgrounds and hockey rinks.

I do not know what parents of children with Down Syndrome experience at a visceral level. But I sure do know a good deal about social inequality and needless barriers based on my experience using a wheelchair. As Palin's son Trig matures she is going to get a real education but this does not mean she will become an advocate for disabled people. If and when Palin becomes an advocate for disabled people I expect to hear a much different speech, one that avoids terms such as "special needs" and instead focuses on the real issue--civil rights.

Monday, September 22, 2008

ADA Restoration Act

Few people noticed but last week Congress passed an important civil rights bill. The bill, the ADA Amendments Act, passed by the House and Senate, will theoretically restore the rights of disabled people. The key word here is theoretically. You see I was naive enough to think that the ADA signed into law in 1990, was supposed to protect my civil rights as a disabled person. The Supreme Court, however, had a radically different interpretation of the law. Since 1999 the Supreme Court did its level best to narrow the ADA and they were exceedingly successful.

Today, I see the ADA Restoration Act much differently. Part of this change is due to being disillusioned with the way in which the Supreme Court narrowed the ADA. In 1990 I was a true believer--I truly thought the ADA was comparable to Civil Rights laws passed in the 1960s and 1970s. My disillusionment has led me to joke with my friends that what modern medicine could not do, cure my paralysis, the Supreme Court did with their pen. I was no longer disabled! As interpreted by the Supreme Court disabled people needed to prove they were disabled and it was possible to be too disabled or not disabled enough in the eyes of the court. The Catch 22 situation was unique in the annals of civil rights legislation as was the fact 97% of plaintiffs lost employment related cases under the ADA. Within the world of ideas the Supreme Court was correct. If I can hike in the woods, kayak on the Hudson River, ski in Vermont, work, and have a family am I really disabled? In many ways, the answer to that question is a resounding no. But that no is based on how I perceive myself--and I am as the slogan goes "Disabled and Proud". The rest of society, those that walk on two feet, see me in much different light. This is where I think the Supreme Court lost its way. My disability does not prevent me from doing anything I want and I lead a rich and full life. Given this, the problems I encounter are not physical but social. This is what the ADA was supposed to be about: the removal, prevention, and elimination of needless unlawful discrimination. Instead, the Supreme Court got bogged down in who was and who was not disabled. The ADA Restoration Act seeks to redress this imbalance and as such is a stinging indictment of the dead end the Supreme Court followed.

One last point: do not believe the myth perpetuated in the news that ADA Restoration Act was passed because of the cooperation of business groups, disability rights organizations, and law makers. The ADA Restoration Act was passed in spite of big business. If I have learned one thing using a wheelchair the last 30 years it is that my presence is rarely if ever welcomed. Hopefully, the ADA Restoration Act will change this but for now I will continue to fight for my cvil rights others do not want to acknowledge or respect.