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Nov./Dec., 1998
blank space Logo design reading 'Electric Edge: Online Edition of Ragged Edge magazine'

Poll got no coverage

I cannot imagine why there was not more attention given to the National Organization on Disability's new poll when it came out ("Nearly half of us don't know about the ADA, says new Harris poll," D.R. Nation, September/October). Your article was the first I had heard of it. Usually around the anniversary of the ADA signing (July 26) you will read stories in the newspapers about disabled people and the effects of the ADA--or lack of effects! But I didn't see anything about this survey. I assume the N.O.D. had a press conference or otherwise notified the media, right?

I hope your meeting next May will help us figure out how we can change this kind of silence on the part of the media. It has gone on long enough!

Bob Brown
Miami

Yes, the NOD did hold a press conference. For more on our meeting next May in Louisville, see page 30. --ed.


Ethicists' propaganda machines

" Ethicists" are running a tax-supported propaganda machine for an ideology ("Peter Singer appointment draws warning," D.R. Nation, September/October). They say they are teaching. Why isn't what they are doing considered incitement to murder, hate speech, misuse of public funds, and abrogation of civil rights?

On June 22 some of us from ADAPT and NDY picketed an " ethics" program for members of institutional ethics committees at Michigan State University. On June 23, I was one of a few disabled people who had paid to attend the " advanced bioethics program" and who were present when Leonard Fleck, Ph.D., assured the group that disability biases the ability to make impartial judgments [about health care]. His point was that we disabled people should not be involved.

In terms of body count, I'm convinced that the refusal of health care is what will kill and has killed the most of us. I doubt if many of us can survive to the point of physician-induced death. Why would anyone risk doing unrequested PID when the " unproductive" can be " disappeared" quietly, one by one, with essentially no risk to the killers and none to the " ethicists" who taught them to do it and society to applaud it?

Something stops universities from funding attacks on racial, gender, and other minorities. What? How do we access and use it?

" Ethicists" are very much aware of the ADA. They " ask questions" about the morality of obeying it. The keynote address June 23 was " Futilitarianism, Exoti-care, and Coerced Altruism: The ADA Meets Its Limits." In the afternoon, we heard about " Quality of Life and End-Of-Life Care of the Incompetent Disabled Person: The Challenge of Non-Discriminatory Discrimination."

It's easy to work on the PID issue (which I'm doing right now.) But if we continue not to deal with the " ethics" movement, which has already severely undermined our health care, fighting physician-induced death is an exercise in futility.

Alice Mailhot


Pro se only works if you use it

The pro-se form you included in the magazine (September/October) is only going to be good if people use it. I am in an odd position: I am not disabled myself, but I work as a personal care attendant for two disabled people--which is how I found out about your publication!

I do not want to embarrass my employer (which is why I am asking that you not print my name!) but he should use this form, he has a perfect case--in fact several of them--but when I bring it up, he defers. If I press him, he says he will do it " soon" but I know he isn't going to. He often has me accompany him to local establishments in order to help him in and out of places that have a little lip on the doorsill. I do not mind doing this at all, it is what I am paid for! But it makes me angry that these establishments should be obeying the ADA--and it would take so little for them to comply! but evidently nobody challenges them!

We have had several heated arguments over this, in fact. It used to be that he said he couldn't " afford a lawyer"--but your pro-se form now has taken that excuse away from him. Now he says he won't be able to go in there again if he sues them--and I know he is embarrassed, but somebody has to do something

I believe that I am not alone in seeing this problem with some disabled people. But I am in an odd position because if I keep bringing it up I am afraid he will ask me to leave, and other than this it is a good job and I like being an attendant. Other disabled people are like this as well, at least the ones I know--other quads and all could sue, but nobody else seems to do it, either. My other employer, though, is an older lady in her 70s, so I don't expect her to do as much. Maybe I should.

I have become frustrated about this. It seems as though disabled people were given the ADA but don't feel right about using it. What good is it, then?

Name withheld by request


Interpreter via IDEA welcomed

Thank you for your article about the IDEA being used for interpreters ("Little-noticed IDEA amendment may give kids interpreters," D.R. Nation, September/October) My daughter's son has a hearing problem and she has been learning sign language. When he enters school, I am glad to know that he will be able to have an interpreter--something I have been worried about! I am going to hold onto this article in my files--to use when the time comes! Thank you again for providing this timely information.

Sarah Mitchem Baton Rouge, LA


ACS does not represent chemical industry

As chair of the American Chemical Society Committee on Chemists with Disabilities and a Ragged Edge subscriber, I was concerned when I read Sharon Wachsler's article which appeared in advance of the symposium on multiple chemical sensitivity at the American Chemical Society's national meeting in Boston this past August ("MCS conference to be inaccessible to people with MCS," D.R. Nation, July/August). I am disturbed that the article mischaracterized the American Chemical Society and its approach to assisting people with disabilities. ACS is the world's largest scientific society, a learned society made up of 155,000 individual member chemists and chemical engineers. The American Chemical Society (ACS) is not--and does not represent--the chemical industry.

As a nonprofit educational organization, we publish scientific journals and databases; convene technical research meetings; provide career services; serve as a leader in science education at all levels and conduct other educational and informational activities. ACS is composed not only of industrial chemists, but academic researchers, high school science teachers, consumer advocates, and many others. It has no position on MCS, and has not hired a public relations firm to discredit those who have it. The national meeting is primarily a way for these chemists to share and discuss their results with colleagues who have similar interests. This allows them to build on each others' findings, as well as avoid duplication of effort.

The Committee on Chemists with Disabilities promotes opportunities, both educational and professional, for persons with disabilities interested in pursuing careers in chemistry, and in fields that require a knowledge of chemistry. We also publish a book on " Working Chemists with Disabilities, Expanding Opportunities in Science."

We feel that the American Chemical Society has been in the forefront of scientific societies in addressing the needs of disabled scientists and science students. The Committee is composed of several chemists with a variety of disabilities, or who have immediate family members with disabilities. In addition to educational projects, we have been working with the meetings office to make all American Chemical Society functions accessible to all members.

Dr. Amy Brown is a researcher at the University of Maryland who volunteered to coordinate a symposium in her area of expertise. Her role in organizing the symposium was to provide a broad view of current research serving as a forum for scientific discussion. During the multiple chemical sensitivity symposium, 24 papers were presented representing perspectives of scientists as well as those of persons affected by MCS.

It is my understanding that, in order to assist those unable to attend the multiple chemical sensitivity sessions, the Division of Agrochemicals, co-sponsor of the symposium, is making audio tapes of the presentations available after the meeting, at a minimal cost.

Dorothy Miner, Chair
ACS Committee on Chemists With Disabilities
Washington, DC

Sharon Wachsler replies
Editing of my article excluded certain information, suggesting unintended correlations. ACS literature states, "More than 60% of ACS members work in industry." Thus, while ACS may not officially "represent" the chemical industry, its membership has a large stake in industry and industry's agenda regarding MCS. Further, it is unconscionable to host a conference on a specific disability and not provide access for individuals with that disability. Audio tapes do not take the place of actual inclusion. Despite my repeated inquiries, ACS conference organizers never mentioned the tapes, disability committee, nor interest in MCS access.


The gray area again

After reading both what was posted on "The Grey Area" website (hate for the imperfect--thinly veiled behind gauzy words about "little angels") and then reading what Mary Wilt had to say ("A Paean to Eugenics," July/August), I think they are confused as to the definitions of "hate" and honesty.

Groups that support people with disabilities do not promote abortion as a "cure." Anybody who expects perfect fetuses is going to be disappointed throughout their lives. Perfectionism is not realistic or humane.

I am particularly offended (as a post-aborted woman) that now that some pro-abortion folks are admitting that post-abortion syndrome exists, they are attempting to dictate what the proper terminology, feelings and symptoms should be. Incredible! I visited one post-abortion support site where a woman's letter of apology to her aborted baby was called "pathetic" and women were being told that feeling "guilt" was not appropriate.

I felt ashamed that I had a 10-year denial period after my abortion, failing to acknowledge my child's existence and death. But at least I didn't claim to be grieving while still defending what I had done. Once I faced the truth, I faced it head on--no more self-deception or seeking "validation."

Judy Ferris


Tripping back east

In my early disability years in New York City, before the days of power wheelchairs and vans with lifts, before the days of curb cuts and accessible buildings, New York City policemen still walked the beat on city streets. They were very helpful to me and my disabled friends.

They helped me up and down high curbs and across busy streets. There was never any fear of being tipped over in my chair, as they always listened to instructions on how to tilt the chair back on its large rear wheels to get me up a curb and onto the sidewalk, and how to slowly lower the chair down off a curb the same way.

My cousin and his girlfriend invited me and my boyfriend to their basement apartment in Greenwich Village. My cousin got both our wheelchairs down the three steps into the apartment. A few drinks later, when we were ready to leave but found he couldn't get us back up, a quick call to the local station house brought one of New York's finest to the rescue. He got us up the steps, and graciously refused the dollar tip we tried to press on him with our thanks.

The very visible policeman on his beat often helped me out of my boyfriend's two-door Chevy when we went to visit friends. There was a ritual to the procedure: following my instructions, he'd take my folded wheelchair out from behind the front seat. He'd open it, place my cushion on it, then lay his nightstick on the roof of the car. He'd reach in and lift my 100-pound body out of the front seat and into my chair.

Getting back in the car was less of a hassle. I could transfer from the chair to the car seat using a sliding board. I only had to wait for a capable-looking passerby, who I'd ask to fold my chair and put it in the back.

People on the street were helpful in other ways. I often asked for a push up the block, or into a building. I never asked for more than one block's worth of pushing--and only if the person was going in the same direction. No one ever refused.

In those years, New York City cab drivers took wheelchair passengers. I used Checker cabs because my chair fit easily between the front and rear seats without my having to transfer. I'd have the cabbie raise the rear seat, then tip my chair back and lift and push it into the wide space inside. John Hockenberry, in his book Moving Violations, says this is no longer true. Sadly, times change.

It was the Fifties. There were no laws requiring access then. My friends and I enjoyed getting together on Friday and Saturday nights in one of the few accessible places in the city--McCarthy's, on West 14th Street and Seventh Ave. next to the Federation of the Handicapped. McCarthy's was a friendly Irish working-class bar with a large back room with booths and tables. The regulars sat at the bar; we had the back room to ourselves. Boys met girls, girls met boys and everybody had a good time. Drinks were 40 cents; every fourth one was on the house.

We also enjoyed Dillon's, another Irish bar; this one under the El in Astoria, Queens. Mr. Dillon not only had a large back room; he converted two restrooms into one large one, making it accessible.

Both establishments were friendly to us. Though they were woefully lacking in atmosphere, to a bunch of gimps recently out of back rooms, the freedom they signaled to us was heaven on earth.

Peggy Hecker
El Cerrito, CA

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