Ashley Treatment Symposium

Yesterday I read an account of a symposium held in Seattle that dealt with the Ashley Treatment or what doctors like to call growth attenuation. The account I read was written by Emi Koyama, director of the Intersex Initative based in Portland and appeared on the website What Sorts of People. I was deeply concerned by what Emi wrote because it appears that the working group created to study the controversy surrounding the Ashley Treatment is akin to a steamroller designed to pave the way for growth attenuation. I may certainly be wrong as my knowledge of what took place at the symposium is limited to what Emi wrote. I also know that Adrienne Asch, a prominent disability studies scholar, is a member of the working group and find it hard to believe she would acquiesce to such an approach. I have been in touch with Benjamin Wilfond, a pediatrician and ethicist at the University of Washington who informs me that the symposium was taped and will be made available next week. I encourage all those with an interest in disability rights to watch what took place in Seattle when it becomes available. I will post a link when possible.

Two things struck me when I read Emi's assessment of what the Working Group has concluded. First, most members of the working group believe that growth attenuation is morally and ethically acceptable if the parents of profoundly disabled children request it. While it is possible that growth attenuation in rare cases may be ethically acceptable, the implications of this treatment and circumstances under which it is permitted are troubling. This leads me to wonder just how profoundly disabled a child must be? Are any other children aside from those with a profound cognitive disability going to be considered for such treatment? If not, what does this say about the value we place on the lives of those that have a profound cognitive disability? These are certainly important questions that must be answered. Second, I cannot help but think that the answer to enhancing the life of children with profound disabilities and their families is never going to be found stunting the growth of a child and removing body parts as was done to Ashley X. To me, the problem is largely social. We as a society must value all life and treat one and all equally. This is the ideal we must attempt to live up to. I do not care how robust informed consent is, surgery and growth attenuation does not seem like the appropriate solution. It is, for the lack of better words, simply the wrong thing to do.

My concerns are echoed by others including Emi who concluded her assessment of the symposium by writng:

I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.

This conclusion is indeed a cause for concern. And I wonder if it is enough to stop doctors from attenuating the growth of children.

Dangerous People

I just read a great three part column in the NewStatesMan by Victoria Brignell. Brignell writes a regular feature entitled "Crip's Column". I have read Brignell's columns once a while but am not a regular reader. I was very impressed with her three most recent three articles that "gives an account of the three most dangerous--yes dangerous--disabled people of all time". Her first two choices were what one would expect. Joseph Goebbels, Hitler's Minister of Propaganda, came in third. Second place went to Wilhelm II, Kaiser of Germany from 1888 who played a major role in World War I and contributed to the deaths of about 6 to 8 million people. The man that came in first was Thomas Midgley. This selection stumped me. Why was Midgeley chosen #1. He was a chemist that invented leaded gasoline. After this invention he worked on cooling system in fridges. Apparently the first fridges had chemicals that were flammable and lethal if they leaked inside the fridge. Midgely invented chlorofluorocarbons or CFCs. In the 1970s it was discovered these CFCs were destroying the crucial ozone layer and are now banned.

While I think Midgely is an unfair choice, the idea of who was the most dangerous disabled person was an interesting idea. Brignell, notes, and I agree, "bad" people are often more interesting than "good" people. Yet, I prefer to think about all those unknown disabled people that have enhanced the quality of my life. I wish these people, i.e. a man such as Edward Roberts, were well-known. Everyone knows FDR was disabled and far too many people remember Christopher Reeve. Both these men were anti-heroes to me. FDR was a complicated ambitious man that hid his disability to further his political career and quest for power. Reeve was so focused (or self absorbed) in his quest for a cure to spinal cord injury he distanced himself from other disabled people and in so doing set back disability rights by more than decade. In short, I want to know more about all those faceless and unknown men and women that advanced disability rights that do not appear in history books. I want to know what they thought and wonder how hard their lives may have been. Part of my wonderment stems from Obama's inaugural speech in which he mentioned segregation was common sixty years ago. This has in turn led me to wonder what will the life of disabled people be like in sixty years? Will access be common? Will stigma still be attached to physical and cognitive disabilities?

X Games: Mono Skiers as a Tease

What an awesome weekend I had. My son, his friends, and mine skied Saturday at Sugarbush Resort, Vermont. My son was thrilled because he skied tree trails and Mt. Ellen's black diamond slope FIS. I was happy because I got to ski with my favorite volunteer who donates her time to Vermont Adaptive Ski and Sport. I am well on my way to being an independent skier and have found the bi-ski to be the ideal rig for me. Although the correct equipment is critically important, I have found two programs, Vermont Adaptive and New England Disabled Sports at Loon Mountain, that are very different but outstanding. I will be an independent skier because I have connected with expert volunteers in Vermont and New Hampshire who have made skiing fun, improved the quality of my life, and enhanced the relationship I have with my son. In fact, I have made so much progress my son is impressed. Believe, me it takes a lot for a parent to impress his teenager!

On our drive home we each looked forward to watching the Winter X Games 13. As one would expect, our favorite event is the mono ski competition. The X Games attracts the top mono skiers in the United States and abroad. The mono ski race is intense and the athletes possess world class skills. Introduced in 2005, in 2007 the mono ski race became a medal event. This represented great progress but what separates the mono ski event from all other adaptive sports is its broad appeal. In 2008 I saw the X Games mono ski race in a New Hampshire bar replete with large flat screen TVs. I was amazed to watch not only the mono skiers but the intense interest of other people watching the X Games. The mono ski race captured the interest of every person in the bar. l recall being amazed by a huge roar when the gold medal winner KJ Van Der Klooster soared over the last jump to win the race. I wondered then if the X Games and the mono ski race could be the first adaptive event to grab and hold a wide audience. Based on my television viewing experience yesterday, the answer is an overwhelming yes.

The X Games were broadcast on ESPN between 2PM and 6PM. ESPN is part of most basic cable TV packages and widely watched by men 18 to 45 years old. We got home at 4PM and turned on the X Games. I expected the mono ski event to sandwiched between more popular events and relegated to second class status. Much to my amazement, the mono ski event was used as a teaser. The mono ski gold medal final was being used to keep viewers glued to their television sets! The mono ski event was the grand finale of the afternoon broadcast. This was a first, adaptive athletes being placed in the spot light. The announcers were excited, quick clips of the qualifying round replayed many times, the scroll at the bottom of the screen listed the athletes in the gold medal race. My son and I looked at one another and each of us felt this focus was unprecedented--the mono ski race was the center piece of a mainstream broadcast. Sadly, the gold medal race was not nearly as exciting as the qualifying races. The 2007 gold medal winner, Tyler Walker, easily won the race yesterday. Like other gold medal race winners, Walker was interviewed after the race. Not a single question related to Walker's disability. The focus was solely on his racing career, recent wins in Europe, and the gold medal race. On the ESPN website, the most popular video clip from the X Games, Winter X 13 Rollout, feature the gold medal mono ski race along with other popular events. A glance at newspapers in Vail where the X Games were held all have stories about the mono ski race. Local papers where the mono ski athletes live all had feature articles on the race.

The surging popularity of the mono ski race is having a direct impact on ski resorts. Most resorts welcome adaptive athletes and adaptive programs are rapidly expanding. While I will never be confused with a world class skier, I have noted this year that I am far from alone on the slopes. Adaptive skiers seem to be more common place. Skiers without a disability think mono skiing and the bi-ski I use are cool. In fact, I had an interesting conversation with a snow boarder who was interested in the difference between the bi-ski and mono ski. He instantly appreciated the fact bi-skiers do not posses the same elite or cool status as mono skiers. He compared this to the rivalry between skiing and snowboarding. What was of interest to me after this discussion was that my physical disability was never mentioned, not even in passing. The focus was on ski gear, how cold it was, and the condition of the slopes.

I am particularly encouraged by the coverage of the X Games and the mono ski race because it has transcended archetypical mainstream media coverage of an adaptive sporting event. In spite of how happy I am with the coverage of the X Games mono ski race, adaptive athletes face daunting problems. Foremost among them is the cost of adaptive equipment. The cost of adaptive ski equipment is so costly it hampers small programs such as Vermont Adaptive that is dedicated to getting people with disabilities out on the slopes. A bi-ski, mono ski, and dual ski, the three most common sit skis, cost between $2,500 and $4,000. A set of riggers a sit skier uses costs an additional $375. Think about this: when I go into Sugarbush Vermont Adaptive office I see 30 pairs of riggers hanging on the wall. That adds up to about $11,000 alone. For an average person such as myself, a bi-ski and riggers would cost $3,000. I would then need a season pass and winter warm weather gear none of which is cheap. The significant cost involved in adaptive skiing affects affects elite adaptive skiers as well. For instance, Kevin Bramble, a two time Paralympic gold medal winner, designer of a leading mono ski (KBG design), and leading figure in mono skiing did not medal at the X Games. Bramble had hoped to use possible X Games prize money to train at Lake Tahoe in order to practice for the Paralympic qualifier. Elite mono skiers such as Bramble lack corporate sponsors and because he did not win will return home rather than train. This is hardly a new story for adaptive athletes. It is also why the X Games have the potential to change the way adaptive athletes train and are perceived by the public. With public interest, corporations will seek out athletes such as Bramble and others because they have broad appeal. If and when this happens there will be a trickle down effect. Ordinary skiers will expect to see adaptive skiers on the slopes. Resorts will expand adaptive ski programs and create local mono ski races. Hopefully as more sit skis are manufactured the cost will decrease thus enabling more people with disabilities to ski. I hope this is more than wishful thinking in the after glow of a great weekend.

Barry Baker Update

In the last two weeks virtually no news has emerged about the death of Barry Baker. Readers will recall Baker died when two ambulance workers called to his house decided his life was not worth saving. According to news reports, the ambulance workers were appalled by the condition of Mr. Baker's house. BBC news is reporting that the two men who were arrested on suspicion of neglecting to perform a duty in public office have had their bail extended to next February. I am not sure if this extension is significant or simply common place.

Day One Obama Agenda a Home Run

Wow, it took all of one day for Obama to address disability rights. At the Whitehouse.gov/agenda website Obama has clearly spelled out four far reaching goals. I may quibble with the order but not the goals. This is exactly the sort of agenda tha can truly change the life of disabled people. Will these goals change the current situation people with disabilities find themselves in? No, but it has the potential to profoundly change the life of many disabled people in the years to come. Here are the four goals Obama will seek to address,

1. Educational Opportunities: Obama wants to fund IDEA, Individuals with Disability Act, provide early intervention for people with disabilities and empower disabled people to go to college. He also wants to make college more affordable for people with disabilities and study why so many disabled college graduates do not find employment.

2. End Discrimination: This is not possible but admirable. Obama wants to enforce and restore the ADA, make health care more affordable for people with disabilities, and end genetic discrimination.

3. Increase Employment: Obama wants to require the federal government and its contractors to employ people with disabilities. Private employers will be encouraged to hire people with disabilities by giving them tax benfits.

4. Community Based Living: To me, support for community based living should be the top short term priority of the administration. Far too many elderly and people with disabilities find themselves in nursing homes from which they never emerge. The Community Choice Act would empower many to live in their own homes as they desire.

These four goals are lofty, appropriate, and desperately needed. They can change the lives of people today, next month, and for years to come. I would have added the opposition to assisted suicide, a movement that had great success in 2008, and universal health care. However, the four goals set forth are a finite number, easily remembered, and worthy. I am energized yet again that Obama appears to the proverbial big picture in mind. Disabilities is not the only issue he seeks to address under the White House Agenda: civil rights, poverty, technology and many other issues are included.

Obama's Inaugural Speech

My high expectation for Obama's inaugural speech were met today. Perhaps it was the occasional CNN camera on former President Bush that made me think it has been a very long time since we had a man in office that could inspire others with mere words. Today, Obama did that for me--I was inspired by his words. Regardless of one's personal and political views, all must acknowledge he is a great speaker. Today's speech was a great one and I hope it will be followed by swift, decisive actions that are equally inspiring. On this score, I worry how much one man can do. But Obama has the power of the people behind him. He is in every sense of the term a rock star, his power immense.

A good friend emailed me today and when I replied I asked about her reaction to Obama's speech. She did not bother to listen. I was incredulous. History, I said, was made. A black man is the President. To me, this is proof positive this nation has changed. I told my friend Obama is more than our first black president. He is more than a gifted speaker. He is more than inspiring. I hope he is the man to bring about the changes he promised the last two years. I think he could be the man. The man that will push the government and cynics such as my friend to be energized. We are emerging from an eight year span in which the worlds wealth has been diverted into the hands of a tiny minority of people and corporate entities. Our government operated under a business model that not only failed but was corrupt, ethically bankrupt. In its place we have a man that may be truly special. Obama promised that:

We will restore science to its rightful place, and wield technology's wonders to raise health care's quality and lower its cost. We will harness the sun and winds and the soil to fuel our cars and run our factories. And we will transform our schools and colleges and universities to meet the demands of a new age. All this we can do. And all this we will do.

These are wonderful sentiments, things we should indeed aspire to. More than words Obama also noted that:

What is required of us now is a new era of responsibility--a recognition, on the part of every American, that we have duties to ourselves, our nation, and the world; duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task. This is the price and promise of citizenship.

Obama's views express why I am hopeful and committed. I will continue to write, piss off people that violate my civil rights as a crippled man, and push for those with disabilities I have never met. I do this in the hope that in 60 years the life of other crippled men will not be like mine. These cripple men, women, and children will shake their head and wonder why was the unemployment rate among disabled people 70% They will read about buildings that were not accessible. They will be appalled that health care was unaffordable, people forced into nursing homes because no community support existed. They will read about institutions that no longer exist, razed and replaced by new schools and accessible homes. They will gasp in disbelief that people with cognitive and physical disabilities were stigmatized. So today, I dream of a country that for me does not exist yet. But one that Obama has at least helped me dream about.

Obama Inaugural Lies

For months I heard the incoming Obama administration describe the forthcoming inaugural as the most accessible in US presidential history. In the last week I heard a very different story about the inaugural emerge. Millions of people are expected to attend, the weather is projected to be cold, and security overwhelming. Bridges will be shut down, cars banned in a two mile radius of the Capital, elevators will be shut off, and mass transportation at crush capacity. The Presidential Inaugural Committee has not minced words: people with disabilities, the elderly, and small children will encounter numerous and overwhelming obstacles. According to Carole Florman, who I have sarcastically dubbed Ms. Sensitivity, the inaugural committee is "trying to paint a realistic picture". My fellow blogger Steve Kuusisto at Planet of the Blind has translated this statement into plane english:if you are disabled or elderly do not come to the inaugural. Yes, we get the message.

None of the above differs from what I have already written. Two things have changed: first, a few media outlets are picking up on this story. The Associated Press published a story today that contained a statement from the Presidential Inaugural Committee that is not just wrong but grossly misleading. No, Ms. Sensitivity did not put her foot in her mouth again. This time it was Kevin Griffis, a fellow committee member who stated "At every event that the Obama campaign did during the election, we wanted to be sure to be welcoming to Americans with disabilities, so this is not something new for us. I think just the scale is larger". This statement brings me to my second point. Mr. Griffis statement about access is as absurd as it is false. Multiple campaign events were not accessible. I know because I tried to attend several in the metropolitan area and they were not accessible. Other disabled people had the same problem. When I contact the the Obama campaign I was told access was not their responsibility and now the very same people are trying to tell me that insuring events are accessible is nothing new?

The lack of access at the inauguration is disheartening. Obama was swept into office promising change and his message was embraced by people with disabilities. Having a president that understands disability has energized many, myself included. Perhaps this is why I am so upset, campaign events were not accessible and now the inauguration presents identical access issues. This sort of disconnect is not uncommon. Large corporations often boast about access and use disabled people as part of their advertising campaigns. Yet, when a person with a disability appears nothing is easy and barriers are common place. For instance, Avis rent-a-car had an ad campaign that featured a disabled business man renting a vehicle who was all smiles. This was great advertising but the problem was it was divorced from my experience. When I made reservations with Avis the car with hand controls was rarely ready when I arrived. As I waited for my car I watched dozens of people leave and I assure you I was not smiling. I was just pissed off.

There is still time for the inauguration to be made accessible and inclusive. However, time is growing short. I am sure many people with disabilities will try to attend and I wish them luck. Organizers have included accessible bleachers and raised platforms at the National Mall. I just hope people with disabilities can get to these locations. If not I am reminded of my days at Columbia University where I earned my PhD. When I was a graduate student the Office for Students with Disabilities was in a building that was completely inaccessible. When I expressed my dismay to the administration they thought the lack of access was a technical problem, one that highlighted the barriers on campus. I hope the Obama administration does not use the same thought process.

Jerry Lewis Protest Links

Jerry Lewis continues to draw the ire of disability rights activists.

Below are three links of interest Andrea Shettle have directed my attention to.

First, there is an online petition I urge readers to sign. Here is the link:

http://www.petitiononline.com/jlno2009/petition.html

Second, there is a a Facebook Group dedicated to the Jerry Lewis campaign. Here is the link:

http://www.facebook.com/group.php?gid=4053839

Third, Andrea writes that she has "blogged about the petition, along with a discussion on the difference between "pity" and "empathy,"; why Jerry's brand of pity destroys; and why real empathy is more likely to lead to human rights:

http://reunifygally.wordpress.com/2009/01/10/protest-pity/

Carole Florman: Ms. Sensitivity?

I forgot to add one quote to my post today. Carole Florman of the Joint Congressional Committee on Inaugural Ceremonies has stated she is "very concerned" about access for people with disabilities. According to Florman she hopes people with "special needs" such as the disabled, elderly and children take seriously the potential for enormous crowds and dreadful weather. She also thinks that:

"Some people may be better off trying to watch it [the inauguration] on TV".

Gee, thanks Ms. Florman. Now I know that not only were there circumstances beyond your control that prevent people with disabilities from attending the inauguration but you were also worried about our well being and safety. We disabled people are ever so fragile and dependent upon the kindness of others. This sort of antiquated thinking was used to prevent disabled children from attending public school (they were a fire hazard) or flying on commercial jets (they were a flight safety risk). The year is 2009 not 1959.

The fact is Obama is rapidly developing a reputation for holding events that are not accessible. He did this during the campaign and now in an event that is supposedly the most accessible inauguration in history his staff is telling people with disabilities they should watch the inauguration at home on TV.

Obama: A Party Pooper

At the end of the year major news outlets reported that the presidential inauguration would present significant and most likely impossible barriers for people with disabilities. According to the Joint Congressional Committee on the Inaugural Ceremonies that is responsible for the logistical details, the drop off points for people with disabilities who want to attend the inaugural will be located many blocks away (parking near the Capital is restricted). The Joint Congressional Committee on the Inaugural Ceremonies website notes that "traffic conditions and restrictions may make reaching these drop-off locations extremely difficult". For those intrepid and fearless people with disabilities that make it near the Capital designated areas for them will be "limited in size and available on a first come first served basis". As for mass transportation, the WMTA has warned people with disabilities that they expect to be operating at "crush capacity". In other words, there is no mass transportation for people with disabilities.

When I read about the lack of access at the upcoming inauguration I yawned, shrugged my shoulders, and thought what else is new. Last year I tried to attend Obama campaign events and quickly learned wheelchair access was not a priority. When I contacted the local Obama campaign office I was told wheelchair access was beyond their control--it was not their job. The campaign directed me to contact the facility where the event was held to determine if it were indeed accessible. After much research and a great deal of time spent on hold I never was able to find out about wheelchair access for any event. The few people I spoke to stated that they would get back to me about access. No one ever contacted me and subsequent emails went unanswered. By the time the campaign ended I was convinced that Obama and his staff wrote great position and policy papers about disability. In theory, Obama understood disability. In contrast, providing physical access for people with disabilities was not a priority or concern. In this regard, the Obama campaign failed miserably.

My indifference to the news that the inauguration will not be accessible is embarrassing. What kind of bad cripple and disability rights activist am I? This thought came to me after reading the following:

Wheelie Catholic:

I've learned that people with disabilities are still struggling to be included in public events, to be a part of, to have access and achieve the simple act of being able to show up. I hope many people have the chance to be a part of the upcoming inaugural events. And I pray that future generations of people with disabilities will have a better chance to attend the inauguration. Because what I'll remember from this inauguration is how exclusion because of lack of access and inadequate transportation results in so many people with disabilities not being able to stand by and witness events.

Planet of the Blind:

How and when will disability accommodations go from being a clumsy "add on" to a "built from the ground up" concern? Will, as some now say, the aging of the baby boomers bring this about? Will a new generation of war veterans help the disability rights community and their veteran elders to keep the pressure on? Surely these things are true. But the "truer" thing is that our nation's universities must be teaching courses in disability studies and thereby introducing our next generation of planners and movers and shakers to the issues of universal design and best practices for making people friendly public spaces.

How can the organizers of the inauguration justify the exclusion of people with disabilities? According to Carole Florman, spokeswoman for the the organizing committee "We can't do anything about traffic, we can't bring people closer for drop-off than the security perimeter will allow, we can't do anything about the fact that the city is closing bridges". Wow, that is a long list of things that can't be done.

I am not dismissing security concerns nor the fact it is difficult to predict how many people will decide to appear. What I do question is the degree to which the presence of people with disabilities is desired and valued. In a city full of people with power I have no doubt their wishes will be met. VIPS rule, cripples do not. And this is part of the problem--people with disabilities are not in positions of power, they are not among the Washington elite. Thus people like Carole Florman think they have done their best to include access for people with disabilities. This is patently false. Richard Simms, executive director of the D.C. Center for independent living has pointed out that the exclusion of people with disabilities is "like a big bold sign that says that if you're a person with a disability, this is not your event". So much for Obama's platform of change--what I see is a decades old pattern of exclusion.

Barriers, physical and social, can be overcome if there is the will desire, and most importantly, demand for inclusion. There is no demand for the inclusion of people with disabilities. Access is never a top priority. It is as Steve Kuusito at the Planet of the Blind notes an add on that is considered after an event has been planned or a building constructed. In his estimation the lack of access is already "built in" the system. The social justification for excluding people with disabilities is ingrained in the structure of America society. Like many other people with disabilities I am sick and tired of excuses and apologies. Solutions to access exist and have existed for a long time. The ADA is almost 20 years old for goodness sake! Obama has the power to make the inauguration accessible to all but has chosen not to yield that power. This is a very bad sign for a man that swept into office with a vision of change, one that obviously does not include people with disabilities.

Dignitas Under Investigation

Not Dead Yet noted that British and Swiss newspaper are reporting that Dignitas, the assisted suicide clinic where Daniel James and almost 1,000 other people ended their life, is under investigation. According to the Swiss newspaper Blick the man in charge of Dignitas, Ludwig Minelli, financial affairs are under investigation. Mr. Minelli has apparently failed or refused to provide investigators with financial documents requested. Newspapers report that Swiss authorities are concerned Mr. Minelli may be profiting from those that have sought assisted suicide at the clinic Dignitas. Some sensational reports claim that one British woman supposedly paid ten times the normal fee to end her life.

This is not the first time Dignitas and Mr. Minelli have generated scandalous headlines. In 2008 Dignitas was evicted from a Zurich flat it owned. Residents complained about bodies being taken out in the elevator and hearses parked outside the building. Another avenue of investigation involved membership in Dignitas. Apparently any person that seeks assisted suicide must become a member of Dignitas. Exactly what membership entails and what it costs is unknown. According to Juerg Vollenweider, state prosecutor in Zurich, authorities do not know what Dignitas does with the money it is paid. Regardless of one's views on assisted suicide, profiting from the death of another human being is morally repugnant and illegal. If Mr. Minelli is profiteering from assisted suicides arranged by Dignitas he should be prosecuted under Swiss law.

Another One Bites the Dust

I never cease to be surprised by curb cuts that line the side walks of American cities and towns. Two things in this regard mystify me. First, why do curb cuts exist at one end of the street but not the other. This creates a side walk to no where, a conclusion that is easy to reach. Second, in parking lots across the country curb cuts are routinely placed in distant if not bizarre locations. Handicap parking is located in one part of a parking lot and the curb cut in another area. People that use a wheelchair know all too well that the problem I am describing is not only aggravating but dangerous. Parking lots and roadways, the gutter in particular, are not places I want to traverse in my wheelchair. Yet I often must push my wheelchair along the gutter and across parking lots to get to where I want to be.

Readers unfamiliar with wheelchair access might think my comments are an exaggeration. I assure you they are not. In the last month two people that use a wheelchair have been killed. Their stories and death were not widely discussed or deemed all that news worthy. The two deaths I am referring to appeared in Newsday, a New York tabloid, shortly before Christmas and in a local Fayetteville paper this week. The people killed were Amelia Shean and Ranford Beckford. Both people used an electric wheelchair and died in the street gutter. What were they doing in the gutter? In Mr. Beckford's case that has not been disclosed, perhaps because he was allegedly killed by Laura Dean who was apparently drunk. Ms. Shean was killed because she was not eligible for paratransit and the bus stop nearest her home was relocated. Ms. Shean's daughter thinks her mother was killed on her way to the grocery store.

The above two deaths are far from unusual. They are as common as my use of road side gutters. Another all too common variable are dehumanizing headlines: "Wheelchair Crash", "Wheelchair Man Killed in Hit and Run", and "Wheelchair Struck and Killed". This is perfect filler and often relegated to newspaper page B 19. On a slow news day a photograph of a battered wheelchair will be published. What is rarely if ever reported is why the person, the human using a wheelchair, was using a roadside gutter. These deaths are unnecessary and bring to mind far too many close calls I have had navigating streets, parking lots, airports, and service stations. The danger is very real, the consequences deadly. Those unfamiliar with using a wheelchair simply do not care or do not appreciate the dangers involved. For example, to enter my son's elementary school a single curb cut exists. When my son was in elementary school this curb cut was regularly blocked by parked cars and buses even though it was well marked "No Parking". When a vehicle was in front of this curb cut it was impossible for a person using a wheelchair to get to the entrance. I was often stuck waiting in the parking lot and asked more than one stranger to enter the building for me and ask the principal to make an announcement that a car with the following license plate number was blocking the entrance. In the five years my son attended elementary school I would guess this happened twice a month. When I suggested to the principal that this was not acceptable and that a second curb be created I was stunned by her reply. She told me that "I do not mind making the announcement to have someone move their car". She went on to state that in her estimation the curb was well marked and that a secondary curb cut would be an "eyesore". The most disturbing aspect the principal's reply was that it was exactly what I expected her to say. The point I am trying to stress is twofold: first, people that use a wheelchair are grossly underrepresented when issues of access are discussed and decided. What may appear to be a "reasonable accommodation" to people that do not use a wheelchair is in fact quite unreasonable. People like the principal of my son's school, an educator no less, simply don't get it. Second, the lack of wheelchair access in particular and disability rights in general indicate the presence of people with disabilities remains out of the ordinary. This is a big problem because too few think about why people with disabilities are not present and active in the workplace, school system or use the mass transportation system on a regular basis. Disabled people are not present because they remain the most disenfranchised minority group in the country in spite of the fact they were granted equality when the Americans with Disability Act was passed almost twenty years ago. In short, those pesky curb cuts described by the principal of my son's school as an "eye sore" are the symbolic representation of a much larger civil rights issue--the equality denied people with a disability.

Disability, Writing Style and the New York Times

The New York Times is the one newspaper I read regularly. I absolutely love and hate the NYT at the same time. The NYT is a paper of extremes in terms of disability. As many familiar with disability rights know, the Sunday Magazine section thrust Harriet McBryde Johnson's debate with Peter Singer into the national spot light. In contrast, readers of this blog know I have severely critiqued NYT articles for publishing sloppy and simply terrible articles about disability. In fact I would characterize most articles that the NYT publishes that touch upon disability related subjects as uniformly bad (the sports, dining, and health sections are consistently terrible).

Given the above I am not sure how to react to Philip B. Corbett contribution on January 6 "Language and Disabilities". Corbett is the deputy news editor who overseas the New York Times style manual and the short essay in question is part of Times Topics, After Deadline. In Mr. Corbett's opinion "we should take extra care in references to people with disabilities". He writes that the "difference between 'the disabled' and 'disabled people' (or 'people with disabilities') is subtle but significant". In addition, "some advocates, in fact, object to any phrase that refers to the disability before the person". Corbett opines that using the word disability in this manner is not always "feasible" for writers in the NYT because it is too wordy or simply awkward. He concludes that "a person with a disability is a person, first of all, with many characteristics beyond the disability".

Golly, I feel so much better. Thanks Mr. Corbett for acknowledging my humanity and the fact I have many character traits beyond my disability. My mother be will thrilled to know that I am more than my disability. Of course, as an "advocate" for people with disabilities one must "take extra care" when near me. We people with disabilities are ever so sensitive.

Sarcasm aside, I appreciate Mr. Corbett's effort and wish him well. I hope all reporters that write for the NYT take his comments to heart--it can only help. But what I want to know is why it took so long for the NYT to acknowledge the humanity of people with disabilities? The ADA was passed almost two decades ago and people with disabilities have fought long and hard to become part of the fabric of life in American society. Do not misunderstand the point I am trying to make: the stylistic change Mr. Corbett suggests is important yet it is one that should have been made long ago. Thus the fact Mr. Corbett and the NYT have just realized the importance of the language associated with the word disability is troubling. Unfortunately Mr. Corbett and the NYT have a lot of company. Few Americans know that the ADA is civil rights legislation, disability rights groups like ADAPT are active, and that the unemployment rate among people with disabilities is almost 70% Hopefully Mr. Corbett's contribution will herald a real change in the way the NYT handles disability related matters. I doubt this will happen but at least one person at the NYT is on the ball.

Slandering the ADA

In the last month two articles have been published about the ADA that sent my blood pressure through the roof. The first was published by Time on December 29, 2008 entitled ""Lawsuits by the Disabled: Abuse of the System" and the second in the Los Angeles Times today January 5, 2009 entitled "Disabled Man's Crusade a Bane to Business Owners". The articles in question skewer disabled men that have filed multiple, as in hundreds, of ADA complaints. One of the men singled out by Time, Jarek Molski, is characterized as a "hit and run plaintiff", a "serial claimant", and an "opportunist". The victims of these so called "frivolous" ADA law suits are the most vulnerable in a weak economy: small businesses. The large number of ADA law suits filed by such "opportunists" could have a profound effect on local economies. According to David Warren Peters, CEO and general counsel of Lawyers Against Lawsuit Abuse", the state most affected is California. The "problem" Peters maintains is that California has higher standards than the Federal ASA mandates". Imagine that, higher standards for the ADA, a law that from my view is routinely and often blatantly ignored.

I do not know the men nor the law firms who represent them that are severely criticized in the Time and Los Angles Times articles. Is it possible that Mr. Molski singled out by Time is out for monetary gain? In a word, yes. Is it possible Thomas Mundy singled out in the Los Angeles Times is out for monetary gain? Again, yes, this is possible. It is also possible law firms are seeking monetary gain. These possible abuses are not as interesting to me as the way such ADA abuse is portrayed in the media. The articles in question are quite ordinary and far from unusual. Intended or not, the result is that they undermine the ADA by using language that is sure to incite the reader, especially those unfamiliar with the myriad of problems people with disabilities routinely encounter. Here are a few gems from the two articles:

Paralyzed "Thomas Mundy is trolling for barriers"

A "burgeoning army of crusaders for disabled access " exists.

"Suing for ADA noncompliance has become a cottage industry" in California.

"Disabled Californians" have "taken on the role of freelance enforcers".

"Serial litigants have cut a swath across the state, targeting family-run restaurants, boutiques, bowling alleys and wineries".

ADA lawsuits are "an old Chicago style shakedown".

"Opportunists see this [the ADA] as a great way to make $12,000 a day or more just by eating out".

People who sue under the ADA "appear to be motivated by a sincere desire for access".

"Easy money" has attracted "opportunists", and a "surprisingly large number of suits are filed by individuals with significant prior criminal history".

A plaintiff is described as "divorced and jobless except for self-assigned ADA work".

If roving bands of disabled people seeking to destroy not just the economy but small businesses exist as is implied above I have not seen them. What the articles fail to acknowledge is that 20 years after the ADA was passed significant social and architectural barriers remain common place. Based on my experience, the ADA has been successful in that it has empowered a narrow number of disabled people willing to assert their civil rights. The "problem" as I perceive it is not a lack of curb cuts, elevators, and parking spaces, a troika that is often discussed at length in newspaper articles. Instead, the real issue is twofold: first, those unfamiliar with the ADA think the law solved all the problems disabled people encounter long ago. Second, the vast majority of Americans do not equate the ADA with civil rights legislation and this is exactly what the ADA is--civil rights legislation.

When I read the Time and Los Angeles Times articles my mind went immediately conjured up of all the routine barriers I encounter. For instance how many stores have aisles 36 inches wide as is mandated by the ADA? Not many. The worst violators are toy stores, delis, restaurants, and gas station mini-marts. National brand stores such as the GAP and CVS are no better. GAP accessible changing rooms and bathrooms are routinely locked as are rear entrance doors. Good luck finding the key or manager. CVS is required to have a lower counter at the pharmacy so a person such as myself that uses a wheelchair can see a pharmacist when getting a prescription. Every CVS I have been to stocks extra merchandise displays at this counter. I could provide dozens of example but the point I am trying to get across is that I could be exactly like Thomas Mundy and Jarek Molski. I could file hundreds if not thousands of ADA violations in any given month. Such violations are the norm and when I complain nothing ever changes. The GAP I shop at always locks the accessible changing room in spite of my complaints. The local gas station where I fill up my car routinely blocks the only ramp with cases of windshield wiper fluid. And so the list can go on and on and on...

This is what I want to read someday: an article in Time or the Los Angeles Times about the ADA and what is the most violated aspect of the law. This would make interesting reading. In fact, I would love to hear from readers about what they think is the most violated part of the ADA. My vote goes to fuel pumps. At every gas station in NY a sign is posted that self service stations must provide assistance to disabled drivers when filling up. In brief, the sign states disabled patrons are supposed to honk their horn twice and an attendant will come out and pump the gas. I have been driving for 30+ years and not once has this ever worked. So bring it on, let me know about ADA violations that are the norm.

Barry Baker Assaulted After his Death

British newspapers are publishing photographs of Barry Baker's house, the man I wrote about yesterday. The photographs graphically illustrate Mr. Baker's house was a mess. Apparently this was the first thing that struck the two men when they entered Mr. Baker's home. The most polite newspapers describe Mr. Baker's home as "messy" or "untidy" while more judgmental headlines use words such as "squalor". I cannot dispute the fact Mr. Baker's house was indeed a shamble. The photographs published are upsetting, no human should live in a home that is littered with boxes and the debris of a lifetime. However, my next thought was are these photographs relevant? What, if any, was the point of releasing these photos? Why did the company hired to clean Mr. Baker's home after he died post the photos on their website?

The answer to the above questions is clear to me: the worth of Mr. Baker's life is being called into question. The photographs are being used to help justify or at least excuse the decision made by the EMS workers not to resuscitate Mr. Baker. For instance, one British news outlet, Argus, begins its story today with the headline "Squalor found by Paramedics". The first sentence of the Argus story begins: "This is the scene allegedly faced by two paramedics called to save the life of Barry Baker the man medics are accused of leaving to to die in his home". A photograph of Mr. Baker's home accompanies the story. The unwritten message being sent is obvious: no one should live in such a neglected home. To live in such a home calls into question not just the worth of the individual but his mental and physical ability. This person is not worthy. There is no need save this life or even make an effort to do so. The implication of this unstated thought process is deeply troubling and deflects attention from the only important and relevant question: Why was Mr. Baker's life so devalued? The answer is as sad as it is troubling: Mr. Baker's death is a social tragedy, a sign that some members of society are deemed expendable. Among the most obvious expendable humans are the elderly and disabled.

As a society we are capable of many wonderful things. For instance, Mr. Baker had apparently undergone hip replacement surgery. This a common medical procedure and over the last two decades has enhanced and extended the life of many people, especially the elderly. This is but one of many modern medical procedures that when you really think about it dazzle the mind. We can replace human joints, perform heart by pass surgery, remove tumors, and cure a host of diseases that were once inevitably fatal. Yet I question the value of these complex and expensive medical procedures in a health care system that pays scant attention to long term care. In both Britain and the Unites States long term health care is grossly underfunded and far too many people are condemned to institutional care. How can we as a society justify saving the life of a person that experiences a traumatic injury or in Mr. Baker's case a hip replacement surgery only to let that same individual die of neglect? This question is not easily solved nor is even being addressed. All human life has value, a belief that is not held by all and more specifically by two people that could have saved Mr. Baker's life. What a tragic way to start the New Year.

Grim News to Start 2009

I have not posted an entry to my blog as I have gotten caught up in the usual end of semester, holiday, and end of year obligations. When I add in a day after Christmas car break down that remains unresolved and costly this blog has not been a priority. As I always do, I spent New Year's Eve with a very good bottle of port thinking and dreaming about the New Year. My thoughts were decidedly gloomy last night and this morning. I see no reason to think the economy will improve, unemployment decline, or the financial market to rise from historic lows. I am very worried about money and how I will make ends meet this year. I am worried about my son as I fear he will not get into college because his grades are far from stellar. Assuming he goes to college I wonder how will I pay for his education. In short, my worries have worries.

All of the above pales in comparison to the larger decline in humanism that I have observed in 2007 and 2008. If you want to read about Holiday cheer stop reading because my worst fears about the value of life have been realized in Britain. It has been a strange 48 hours as the news is encouraging and troubling at the same time. On December 30 the British Prime Minister, Gordon Brown, made it clear that he would block any legislation that sought to make assisted suicide easier. In a radio program Brown stated he was opposed to any legislation that could pressure the disabled, elderly, and sick into ending their life. Brown maintained "we have to make it absolutely clear that the importance of life is recognized". These are nice sentiments but a viewpoint that is not widely held. The vast majority of people in Britain and America support assisted suicide. Some have called the move toward assisted suicide the "culture of death", a term I dislike, but is a concept that truly scares me.

My friends who work in medicine scoff at me when I state I am fearful my life will be deemed expendable in the event I get sick. These same friends tell me my disability would never factor in my health care and that my concern has no basis in fact. I wish this were the case because a frightening case in Britain has hit the news. The day after the Prime Minister stated assisted suicide would never be permitted news has emerged that two ambulance workers, what we call the EMS, have been arrested. The men were allegedly overheard discussing whether they should resuscitate Barry Baker a disabled man who had collapsed in his house. Apparently, they were not impressed with the condition of Baker's home and appalled by his disability. Baker lived alone and thought he was having a heart attack. He called 999 and a dispatcher called for an ambulance. By the time the ambulance arrived Baker had collapsed but the phone line was still connected. Unbeknownst to the two EMS workers every word they said was heard by the 999 control center. The two men independently decided that Baker's life had no value. They believed and stated that Baker's life was not worth saving and any attempt to resuscitate Baker was pointless. Their primary concern was not saving Baker's life but figuring out what to say to the control center. The EMS workers were heard deciding how to say that Baker was dead when when they arrived. The call center employees were shocked, called their supervisors, who in turn called the police. The two EMS workers were arrested by police.

Obviously the EMS workers did not know their conversation was overheard and being recorded. A full investigation is underway. The two men were "detained on the suspicion of willfully neglecting to perform a duty in public office contrary to Common Law" and subsequently arrested. This story sent shiver down my spine. Mr Baker was just 59 years old and had recently had hip replacement surgery. My first thought was quite selfish: I am far more physically disabled than Baker and cannot help but wonder what would happen to me in the event I was in the same situation. Would EMS workers see my wheelchair and think "We will let that poor bastard die, He has suffered enough". I am sure my medical friends will remain doubtful such a thing can or will ever happen in this country. I do not have that luxury--I know my life has less value. Society is quite efficient in letting me know my existence and the existence of all those that cannot walk, see, or hear is unwanted. Statements about the sanctity of human life are fine but the reality as I know it is radically different. Great stigma has always been associated with physical and cognitive disabilities. The ADA was passed twenty years ago but the social structure of American society remains hostile to the presence of people with a disability. How do I know this? Well, it is okay for SNL to humiliate David Paterson, the Governor of New York, via a skit that relied on antiquated beliefs about blindness. The unemployment rate among disabled people remains near 70% and this grim statistic has not changed in decades. And what about those uppity cripples that complain? They are described by Time magazine as "hit and run plaintiffs"--the reference here is to Jarek Molski who has filed hundreds of ADA complaints. Mr. Molski has been effectively silenced and must petition the Central District Court in California and all state courts before filing any new ADA lawsuits.

The death of Mr. Baker and the ongoing isolation and stigma associated with disability is proof positive that disabled people have a long road to traverse before we approach anything resembling equality. Activists such as myself are too often a lone voice in a vast wilderness that is shocking hostile. Everywhere I go I encounter physical and social obstacles that are as blatant as they are illegal. Worse yet, I am just one person who is waging what I see as a losing social and intellectual battle. I am not on the front lines with people like those who are active in ADAPT, the real army of the disability rights movement. So on this first day of 2009 I am about as gloomy about as possible about the future. Yet, I know I am lucky in that I am not held captive in a nursing home like other disabled people. My employment is transient and terminal but relatively constant. My son is healthy as could be and my house is well heated. These may seem like modest things to be grateful for but I know that within miles of my home socially invisible people exist, a vast underclass, that wish they had what most Americans take for granted.