Sage Words from One of My Heroes

Vindication -- It's Not Just for Breakfast Anymore

I am sure that it is a common emotion among people from marginalized groups, this feeling of elation and pride, when one of us says or does all the right things and actually has something of an audience for it. I always feel this when I hear about a speech given by Judy Heumann.

Judy Heumann is (I'm guessing) about ten years older than I am, and thus went through many of the same experiences -- special ed in a segregated system being chief among them. She is also one of the leaders and founders of the Independent Living Movement, along with the late Ed Roberts.

I found the article below at ADA Watch, at http://www.adawatch.org/JudyHeumannPA.htm.

I don't have many people I would categorize as heroes, but Judy Heumann is definitely one.

I would also like to add that Ms. Strohm, who wrote this article for the Univ. of Pennsylvania News did a terrific job of conveying concepts that are difficult for many people, including well-intentioned liberals, to get their heads around.

Change Needed in Attitude Toward People with Disabilities
By J. Elizabeth Strohm
University of Pennsylvania News

Judith Heumann used to be classified as a fire hazard.

“I learned that discrimination was unfortunately a natural part of life in the United States and, as I would learn later, in the world,” Heumann said. Heumann, who has been disabled since she contracted polio in 1949, visited Pitt yesterday as the 2006 keynote speaker for the Thornburgh family lecture series on disability law and policy. Her speech attracted an audience of more than 150 people, a disproportionate number of them with disabilities, to the Barco Law Building’s Teplitz Courtroom.

Heumann, who serves as the World Bank’s first adviser on disability and development, discussed her own history battling barriers faced by disabled people, as well as the development of disability laws in the United States and the future of disability issues in the nation and the world.

There are 54 million people with disabilities in the United States and half a billion in the world, according to Chancellor Mark Nordenberg, who joined former Pennsylvania Governor and U.S. Attorney General Dick Thornburgh in introducing the topic and speaker. “Eliminating obstacles ought to be a national and international priority,” Nordenberg said.

Pity, fear and lack of knowledge create barriers for people with disabilities, Heumann said. “The physical barriers may be coming down, but attitudes change very slowly,” she said, explaining that attitudes and acts of discrimination are the biggest problems facing people with disabilities. Heumann said that no amount of money could remove the obstacles created by biases.

Early experiences provided Heumann with powerful lessons about many people’s attitudes toward disabilities. She was denied admission to school because she could not climb the building’s steps, even though her mother offered to assist her each day. Public facilities were not accessible for people with disabilities when Heumann was young, and although many organizations sponsored research toward cures for disabling diseases, few fought to remove barriers — and few thought to include people with disabilities in waging the fight, she said.

One group that did manage to find a voice early on was composed of disabled World War II veterans. Their efforts brought about the first state legislation to make new buildings and sidewalks accessible to people with disabilities. Heumann began taking major steps toward rights for people with disabilities in college; she organized rallies and protests with other students with disabilities.

When Heumann got out of school and was denied her New York teaching license because the board did not believe she could get herself or her students out of the building in case of a fire, she took the case to court. After the judge suggested that New York City’s Board of Education rethink its decision, Heumann became the first person in a wheelchair to teach in New York City.

On her first trip out of the United States, Heumann attended the Paralympic Games as a spectator in Heidelberg, Germany. Meeting people with disabilities from other countries for the first time, Heumann said she realized that people in every country had to deal with many of the same challenges. “It was very exciting to see how our visions were the same,” she said, adding that people from wealthier nations had better technology and opportunities but that “we all faced the same barriers.”

At her current position, Heumann works to introduce disability issues into the World Bank’s many international programs. “Disability has to be part of every development discussion,” Heumann said. For example, less than 10 percent of disabled children around the world attend school, Heumann said. “Too many people in the United States remain uninformed about the problems and challenges faced by the more than 400 million people with disabilities living in developing countries,” she added.

Heumann emphasized the importance of applying a “disability lens” to every situation, so that everyone might better understand the challenges faced by people with disabilities. “We’re integrating disabled people into the fabric of everything that’s happening,” Heumann said.

Heumann described disabilities as a factor to incorporate into decisions, and not as a problem to solve. “Many of the institutions really think about disabilities as something that will someday no longer exist,” Heumann said “We don’t see disability as a tragedy,” she said, describing it instead as simply “something that will always exist, at least in our lifetime.”

Universal Design at the Pump

I don’t drive my ’94 mini-van very much. Partly because it has 152,000 miles on it and I’m trying to keep it going for another year or two. Partly because the wheelchair lift on it is cumbersome and awkward to use, and so I just take my power wheelchair and public transit whenever possible.

A couple of weeks ago, I decided to drive in to work because it was raining, and using the lift wasn’t as onerous as getting rain blown in my face at the train station. My car was on empty, and I went to a nearby Shell station, because the prices were actually the lowest in my neighborhood. That was my first surprise.

The second surprise came when I got out of the car.

Aesthetically Pleasing Combo of Retro and High Tech

I noticed, when I pulled in the station, that it had been redone, like most of the Shell stations in the area, with the rounded corners and edges that I think of as “retro” – similar to the “dinerfication” of Denny’s.

When I got out of the car and went around to the pump and my tank, I noticed that the display, buttons, credit card processing slider, and keypad were all lowered. Because I’m only 5”2’, this meant that I didn’t have to stretch or fumble to reach everything I needed.

I then realized that if I had to, I could use this pump from my wheelchair. At this, I was thunderstruck.

The Next Step in Equal Access

In California, if you have a state issued “handicapped” placard, which gives you license to park in the recognized blue spaces in parking lots and on some city streets, the placard is also supposed to trigger minimal services at a primarily self-serve gas station. If there are an adequate number of people on duty, they are supposed to come and pump your gas for you if you have a placard, at self-serve prices.

Getting the attention of the gas station attendant, who doesn’t have to pump much gas, can be a challenge. Also, the training they receive in this area seems to vary widely, and you can never be certain that they will respond to one’s waving of the placard from the driver’s seat.

A newer development I’ve noticed is that some stations have a button (with the blue and white wheelchair man logo on it) that you can push to summon the attendant. (Of course, you have to get out of the car to push the button, and by then you are standing at the pump… So, I usually just do it myself, unless my feet are absolutely killing me.)

On the island of 2 pumps I was parked next to at this Shell station, there was one of those little blue buttons to push, as well as the redesigned pumps.

No Explanation

I looked at several Shell websites for any mention of the redesigned pumps – nothing.

But I can tell you that the Universal Design fairy had been there.

What is Universal Design?

Briefly, the idea of Universal Design is that if you design products so that people with disabilities can more easily use them, they will be more easily useable by everyone. A perfect example of a company whose products exemplify Universal Design is Oxo, which makes all of those “Good Grips” kitchen gadgets.

I recently saw a short TV story on Oxo, in which a designer said that he had designed a non-slipping mixing bowl (the bowl has a rubber bottom so that it won’t slip on the counter) so that his grandmother could continue to make cookies, even though she was 94 and becoming a little disabled.

Another easily recognizable Universal Design feature of the “built environment” are those curb cuts at corners. They not only serve people like me who use wheelchairs, but they also ease the way for women with strollers, people pulling/pushing wheeled luggage, and delivery people everywhere.

Back to the Pump

The lowered controls at the pump enable macho guys who use chairs to get out, get their wheelchair, and pump their own gas. They also enable older women with osteoporosis to better reach all of the buttons.

The only disability-usability difficulties that remain are these:

1) The credit card slider is one of those where you have to completely insert the card and then remove it “quickly”. If you have arthritis or another type of disability that affects your grip strength, that type of slider can be problematic. Sometimes the card slides out easily, and sometimes you really have to have a grip on it to pull it back out. I much prefer the type of card reader that you just slide the magnetic strip through on one side of the card.

2) In California, we have these accordioned nozzle covers at the tip of the nozzle to reduce emissions. I don’t know if they actually do any good, but they do make it harder to get the nozzle positioned in the tank to start refueling.

The Consumer Votes with Their Wallet

Even though I have not be a fan of Shell (or for any oil company, for that matter) for many a year, I have to say that I will think twice the next time I need to buy gas. When I have to buy gas, I’d rather pay for it (and pump it) at an accessible station.

Are you Ready for Your Close-up?

You Oughta Be in Pictures

Go to http://www.michaelmoore.com/words/message/index.php?id=193 to read about Michael Moore's (Fahrenheit 9/11, Bowling for Columbine) next project. He is planning a major expose of the healthcare industry, and he is looking for people to send him "horror" stories of their experiences that he might feature in the movie.

At the moment, I'm not planning on sending Moore any stories, because I think my complaints about the treatment I've received go way beyond the issue of HMOs vs. nationalized health care vs. private insurance, the good or evil that flows from each.

Inadequate Training and Imagination

My problems with the medical treatment I receive stem from the fact that doctor's are not trained in how to deal with and serve patients who have chronic disabilities that they cannot cure. I have a very visible genetic skin disorder for which there are only cosmetic treatments. Unfortunately, the cosmetic treatments make practical functioning worse -- my skin might look a little better (though hardly "normal"), but it becomes so sensitive that I can be injured by the slightest bump or abrasion.

Even today, my current dermatologist's kneejerk response to my discomfort is hydrotherapy -- even though I have learned and explained to him that 1) because my skin doesn't dry out easily from getting wet, water exacerbates odor, and makes me more prone to infections; 2) water makes me "mushy"; 3) removing callouses from my feet actually makes me more prone to blistering.

My disability's diagnosis is epidermolytic hyperkeratosis (EHK). A couple of years ago, a close friend of mine happened to meet a doctor in Ireland who was in charge of a clinic which provides services to people with EHK and similar "ichthyotic" skin conditions. This doctor coordinates a total healthcare services plan for these clients, which includes appropriate mobility assistance, pain control, infection control, and even dentistry with sensitivity to the fact that the skin around the mouth cracks easily when you "open wide".

My friend commented that she had a good friend (me) in the US with EHK, and that I was not particularly happy with the care I'd received. The Irish doctor said that his impression was that while US research in genetic skin disorders was good, the clinical services were not.

When my friend told me this story, I had two immediate reactions. One was -- how do I move to Ireland? Secondarily, I felt extremely vindicated that a doctor from another country, whom I'd never met, had come to the same conclusions I had.

Extrapolation

I think that the inadequacies of my medical treatment are experienced by many people with chronic, currently incurable disabilities. I also think that this occurs for the same reasons as I have experienced them -- doctors are trained to focus on making people as close to "normal" as possible, often to the detriment of comfort or function.

Doctors need to learn to partner with the patient who has a long-term disability, and to discuss each patient's priorities, such as appearance vs. functionality. This is a training and attitudinal issue, not a "healthcare system" issue.

Division of Labor

Michael Moore can take on the Healthcare System. I am going to keep tackling the Attitude Issue.

Railroaded, addendum

I received this comment on my "Railroaded" entry:

"...As a regular rider, I think Caltrain has been improving the ADA accessibility. I'm thinking it's just a one time deal. Heck, I've seen the conductor and engineer make sure everything is going to be 'just' right for PNA passengers..."

Not to be cranky, but this makes my neck hurt. It sounds like a pwd (person with a disability) who is grateful for whatever access they get.

I don't think I am a radical. I am all too aware that the fact that Caltrain still exists at all in its current form, and hasn't been replaced by the completely accessible BART and/or VTA (light rail systems that cover the Bay Area, but do not meet strategically, as one would hope) is political and financial.

Caltrain is sharing the rails with freight trains that need specifications that are sometimes in direct opposition to accessible platforms and cars for the passenger trains.

I have the delusion that it is my civil right to have equal access to public transit. That I should be able to enter and exit the train or light rail independently. That I shouldn't have to count on a special car, good hearted employees or special equipment to get to where I want to go.

As it is, people with disabilities are the only "protected class" who still have literal and figurative access issues with transit. Ethnic minorities, persons with alternate gender identities and/or sexual preferences, women, and all religious orientations are able to seamlessly board any damn public transit vehicle they want -- and it would be front page news if such were denied them, on the basis of their membership in that "protected class".

We're fifteen years out from the ADA, are we not? Transit authorities of various stripes (trains, planes, buses) have all been given generous extensions of time to get their equipment upgraded. Under the current political clime, I'm certain that disability access is looked upon as a distasteful waste of public funds.

It (the lack of equal access) is discriminatory and marginalizing. Period.

When he was involved in the Brown vs. Board of Education segregation case, Justice Frankfurter asked Thurgood Marshall his definition of "equal" he said, "Equal means getting the same thing, at the same time and in the same place."

That's all I'm asking for.