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.

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.

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.

Media Fails to Notice ADAPT

With the stock market plunging and the economy falling apart before our eyes, perhaps this is not the best time to critique the news media. Or at least this was what I was thinking before I read Divine Ms. Jimmi's blog The Life of Pinky Bear. In her September 17 post, What Pisses Me off About Media Coverage For Disabled People, she wrote:

Things like the special Olympics, Variety Club events, The Cure-A-Crip Telethon or some other fluffy piece about someone trying to overcome their disability (has it worked, are ya not disabled anymore?) gets big press. When people with disabilities take to the streets and say that the system is broken, we don't want to live in your shitty institutions because the sight of us bothers you or that we want our rights along with choices that the mainstream public takes advantage of everyday--suddenly, we're not so cute and inspirational.
People with disabilities want to live in the real world with everyone else. We want our chances to live and work and have families. We hate your institutions, your "special schools" your 'special olympics" and your crappy segregated institutional housing choices.

The above clearly echoes what I have written in previous entries. To say I am frustrated this week would be an understatement. This week hundreds of ADAPT activists have been protesting in Washington DC and the national press has utterly ignored what has transpired. Regardless of what one may think of ADAPT methods, the fact is they are trying to help the most disenfranchised disabled people--those in or potentially forced into nursing homes. This is a story that needs and should be put on the front page of every major newspaper in the country. This is a human rights issue that is broad and shocking in scope. Yet, this story does not make it into the New York Times, Wall Street Journal, or other major papers. Likewise, no national TV network has mentioned ADAPT nor have the presidential candidates discussed the Community Choice Act. This is why I have been so pessimistic about the future. Disability rights are simply not valued and the lack of ethics among those running the nations largest corporations nothing short of criminal. These sentiments led my son to ask me the following while we were watching the network news on TV: "Dad, I'm confused. If we got a credit card and spent a ton of money we could never pay back we would lose our house and be bankrupt. But if a rich guy that gets paid millions of dollars a year runs a giant company into the ground and falls apart the government will jump in and save them. This doesn't seem right or am I missing something". Yikes, my boy is smart. I only wish he asked a question I could answer.

Where the News Goes Wrong

After I completed my entry today I thought more deeply about why the media consistently misses the point about disability related issues. The failure of the media, newspapers, TV, movies, etc. to discuss disability with a modicum of skill is a never ending mystery to me. I understand newspapers must sell adds, TV is reliant on commercials, and movies sell tickets. Yet most news reports and stories about disability rely on well worn out stereotypes. These stereotypes invariably involve the story of some remarkable person who "overcomes" their disability. The greater the success, the greater the story. An obvious and visible disability only makes the archetypical story better.

Tabloids and even the venerable New York Times fall into the above trap. For instance, on September 14 a story appeared by Peter Applebome entitled "Rabbi With the Compelling Back Story is Not to be Rued Out". The story in question is about "a blind rabbi" trying to get elected to Congress who knows "he has gotten more attention than most challengers facing entrenched incumbents because of his unusual personal story". Dennis Shulman, a psychologist and rabbi, is running for New Jersey's Fifth Congressional District against Scott Garrett. Obviously Shulman is blind and has been since he was a child. Shulman is clearly a smart man as are most people that graduate of Harvard. But what I want to know is why does the story about Schulman focus on the fact he is blind and characterize his life as a "remarkable tale to tell"? Why is it remarkable that a blind man graduated from Harvard became a psychologist and is running for Congress? Is it "remarkable" because the social expectations for a blind person or someone with an obvious disability are nil? These stories perpetuate the myth that anyone with a disability that is successful must be a "remarkable person". This conveniently ignores the fact that the most pressing problem disabled people encounter are social not physical. Newspapers love catchy headlines and stories such as the one about Schulman that make those unfamiliar with disability feel good about the world. This requires virtually no thought and can be social fodder for chit chat at the local coffee shop.

My thought process when reading about such "remarkable" stories is very different. The first thing I thought of when I read about Schulman was a press release I read two days before from the Disability Rights Education and Defense Fund. The press release was about the US District Court for the Northern District of California that granted class action certification in a disability action in which plaintiffs argue that the Social Security Administration fails to provide its communications in alternative formats that would enable people with visual impairments to have equal access to programs as required by federal disability civil rights laws. In the digital era and more than 30 years after it was mandated by law I find it hard to fathom how the Social Security Administration can ignore the rights of blind people. To me, this is what is "remarkable" about our society. We pay nothing more than lip service to the rights of disabled people. Sure, laws exist, laws that are ignored or broken every day. This does not ever make its way into the news. Instead, readers of the New York Times are exposed to the "remarkable" disabled person who overcomes their disability. The reality is that what disabled people must overcome is a disinterested government, conservative Supreme Court, and social system that is oppressive, one that still stigmatizes those that cannot walk, see, hear, or think as others can. This is worth reporting about but it is not what people want to know for it is much easier to be assured that "remarkable people" overcome a physical deficit. I just wish more people, those who are not disabled, thought the same way.

ADAPT, Advocacy and Politics of Disability

ADAPT has taken it latest action to Washington DC and the offices of John McCain and HUD. ADAPT has established "DUH City"--a city of activists and tents intent on non violent civil disobedience. The disability rights movement is abuzz with stories of arrests, photos, and I am sure videos to come on YouTube. ADAPT is posting a continuous stream of information on its Twitter site: http://twitter.com/NationalADAPT. To date, ADAPT is reporting that 11 protesters were arrested at the McCain campaign headquarters in Virginia.

There has been much talk about disability since Palin was selected by McCain. Very little of what I have read goes beyond empty rhetoric. Lost in the talk about disability and Palin's decision to give birth to her son Trig are key issues that ADAPT has championed for 25 years. I have written about the Community Choice Act before, a piece of legislation McCain, and I presume, Palin are against. Palin may think of herself as an advocate of disabled children in general and those with Down Syndrome in particular, but I for one fear what will happen if McCain and Palin win the election. What McCain and Palin have not acknowledged is that disabled children grow up and become disabled adults. The grim reality is that there is a crisis among disabled adults--there is not enough affordable, accessible and integrated homes in this country. The majority of disabled adults in this country earn far less than the national median income and rely on inadequate fixed benefits. For instance the federal SSI benefit was $603 a month and the average cost of renting a studio apartment in the nation was $633.

Palin no doubt loves her son Trig but what I keep thinking about is this: What sort of life would Trig lead if his mother was not in the national spot light? What obstacles does the average parent face when raising a child with a disability? And, what will happen to Trig and other disabled people when they are adults? Those without significant financial resources will struggle to put food on the table, a roof over their heads, and pay needed medical expenses. Financial hardship in this country and disability go hand in hand. Palin considers herself a friend and advocate of children with special needs but I have yet to hear her utter one word about the Community Choice Act, health reform, employment, or the civil rights of disabled people. This is not entirely her fault--her appearances are carefully scripted events and the news media is obsessed with her personal life.

What can people do beyond complain about the social situation of disabled people in this country? For some, that would mean involvement and support of groups such as ADAPT that take direct action. For others, and here is where I think disabled people
and their allies can make a major impact, vote according to candidate's positions on disability issues. In short, cater to every politicians overwhelming desire to get re-elected. The learning curve for politicians seeking to get re-elected is steep. If they think disability is a hot button issue it will receive a great deal of attention and support.

The above leads me to an outstanding member of the disability rights community that I admire--Paul K. Longmore. At Patricia Baur's website (www,patriciaebauer.com) she has posted a guest commentary by Longmore. This essay, "What Kind of Advocacy Do Americans with Disabilities Really Need? An Open Letter to the Disability Rights Constituency" Longmore details the views of McCain/Palin and Obama/Biden. This is a must read for all those interested in disability related issues. Longmore is not advocating either ticket though I think most readers will conclude the Democrats track record in terms of disability is much stronger than the Republicans. Most importantly, Longmore can be trusted--he is a serious scholar and the facts he writes about are surely correct. I encourage all readers to look at Longmore's Open Letter. Below is the link:

http://www.patriciaebauer.com/wp-content/uploads/2008/09/longmore_what-kind-of-advocacy-2.pdf

One final point: there are about 36 million potential voters with disabilities. This number will only increase as the Baby Boomers rapidly age. Disabled people are a potentially powerful voting block and political constituency. I think it would be wise to pay attention to disability related topics if I were a politician. Progress has been made since the ADA was passed in spite of a deeply conservative Supreme Court that seems intent on gutting this legislation. If I were a politician I would begin courting disability groups today. This is something Obama is more attuned to and why I will vote for him. In doing so I feel the power of my disabled peers who are thinking along the same lines.

More on Politics and Disability

I have spent far too much time today reading various posts and news articles reacting to Palin's speech and selection as VP. It is clear the disability blogosphere is abuzz. I have posted comments on a few websites I like very much. As I grew increasingly guilty over not getting any lecture work done for my class that starts next week I realized I felt bad for being so critical of Palin. She simply has no experience with disability rights and gave birth to a child a few months ago. She cannot be expected to have a nuanced view of disability related issues. More generally, neither the Democrats or Republicans have embraced disability rights. This thought came to me when I read that both Obama and McCain websites are not accessible or usable to all Americans with disabilities. I have been critical of Obama in this regard in previous posts but the International Center for Disability Resources on the Internet took all presidential websites to task.

The above led me to ask myself which party and candidate is the best choice for disabled Americans? To me, it all boils down to one thing: the Community Choice Act. The Community Choice Act would allow people with disabilities and older Americans to choose to live in their own homes and communities instead of being forced into a nursing home. Both Obama and his running mate Biden have signed their support of this legislation. McCain says he supports community based services but does not support the Community Choice Act. Typical double speak if you ask me. While I generally support Obama, or support a politician as much as a skeptic can, I will be fascinated to see what impact if any Palin will have on the Republican Party. Would she have the nerve to go against the views of McCain and the Republican Party and support the Community Choice Act? I sincerely doubt it but she would earn my respect if she did so.

For those readers who are civic minded I encourage you to support ADAPT. ADAPT plans to lay siege to Washington DC between September 13-18. Over 500 ADAPT activists are committed to getting the Community Choice Act passed into law. ADAPT members are front line soldiers, real bad asses, in the battle for disability rights. I admire their confrontational style, ability to take over buildings, shut down mass transit systems, and reek havoc where they go. ADAPT is the largest grassroots disability rights organization in the country and they make this bad cripple look like a wimp.