Electric EDGE
Web Edition of
The Ragged Edge
Jan/Feb 1998

Electric Edge

MAIL Chicken Soup and respect
When I worked at Waldenbooks, the Chicken Soup books took up about one-third of all the shelf space available for psychology/self-help books. This series is just another example of the blatant campaign to cash in on the success of an initial book by churning out mindless "sequels." To be perfectly honest, I have never read any of the Chicken Soup books, but I don't think this world needs any more touchy-feely sentimental pop psychology books.

As a Talking Books librarian, I served several hundred patrons for nine years. My overwhelming feeling about the patrons I served is respect. We don't need more Chicken Soup books. We don't need more tearjerking stories. We need a caring support system to assist disabled persons to build their own lives and to live as they see fit. We need to get away from the Helen Keller syndrome and focus on the average disabled person. Guess what? The average disabled person is remarkably similar to the average temporarily able-bodied person! Most disabled people want to work, be part of a family, and do ordinary things.

E-Mail Sharon Clontz Bernstein

Odd intentions
I have to admit I have wondered about the intentions of the folks that want to publish this type of book. I am a temporarily abled person married to a man who happens to have a spinal cord injury. Not only is he tired of being told how wonderful and strong he has been to go on with life, I am tired of being told what a special person I am to have the courage to marry him. I fell in love with and married the man he is -- not the physical limitations that he has. I can't help but wonder what this romanticized version of the heroic disabled person will give to the loony tunes who want to be considered "wonderful."

E-Mail Betty Ziska

Leftists vs. liberals
I appreciate and agree with your article on progressive groups being unwilling to take up disability rights. It is a disgrace. Being "good leftists," we differentiate between "leftists" and "liberals" or "progressives." A liberal will speak of welfare reform and support Clinton, for instance -- or, as your article pointed out, speak a good line and then not stand up for what is right. We are, of course, democratic socialists. We are the same party that Helen Keller worked for until the American Association for the Blind asked her to deny her Socialist leanings.

Mary Cal Hollis
Co-chair, Socialist Party USA
New York

More examples -- from socialist circles
The frustrations with liberal and left groups are understandable. I recall a session of the Midwest Radical Scholars and Activists Conference in Chicago some years ago during which a session on disability rights was scheduled for a room totally inaccessible to the majority of the participants in a planned panel discussion, and another session the next year when a disability rights session attracted no audience at all from among the hundreds taking part in the conference. I also recall a deaf Socialist who eventually became inactive because of a consistent failure of groups to make arrangements for an interpreter for her.

A number of conservatives like Justin Dart and the late Evan Kemp have played important roles in the disability rights movement, and some of the best reportage on the movement has appeared in conservative magazines like U. S. News & World Report, but the left end of the political spectrum remains the easiest to educate and the most natural ally of the movement. I have published articles on our movement in The Socialist, Non-Violent Activist, Against the Current, Monthly Review, and other radical journals, have spoken to many quite responsive left-wing groups on this issue, and I have written the article on disability rights for The New Encyclope-dia of the American Left to be published in 1998 by Oxford University Press. This article stresses that the American left and disability rights groups have been fruitfully interacting since the days of Randolph Bourne and Helen Keller and before. I have written at length in the old Disability Rag as to why this should be so.

I recall showing a disability rights film to a high school audience. One young person told me afterwards that seeing the film made her realize that she had prejudices of which she was previously unaware and that she intended to get rid of them. People on the left should respond to our agenda immediately, but, like everyone else, they have to be educated. This is sometimes not easy, but it is well worth doing.

E-Mail J. Quinn Brisben

Bolt's 'Deed'
I found Bill Bolt's article "No Good Deed Goes Unpunished" very moving -- I'm glad Gerri stayed outside with him. The piece said a lot about human nature.

I know progressive groups who don't provide access. I think people tend to focus on specific goals -- their own. Access is a goal only for those who need it.

E-Mail K. M. Carr
Falls Church, VA

Bill Bolt makes a number of very cogent and perceptive observations in "No Good Deed Goes Unpunished." Yet the organization he mentions (Alliance for Survival -- the leader he mentions is far from being its only member) has been vital to a range of antinuclear and environmental movements.

So long as organizations such as the Alliance (and others purportedly devoted to the advancement of "universal human rights," along with individuals like Kovic) "just don't get it" on disability rights issues, their efforts to castigate the Republican Party or Chamber of Commerce for their selectivity will be unconvincing.

E-Mail Art Blaser

Local problems
It's not surprising to me that disabled people can't seem to mount from either the Left or the Right. We're broke, for one thing, and if and when the horse runs, it brings out the natural paranoia in the crowd. My own defensive attitude (increasingly so) is: "screw you and the horse you rode in on!" It's partly situational, partly in defense of my own sanity. But it's also socially limiting. The latter might be seen as anti-activist, in view of our goal of more acceptance by [society].

I would be better off building an army.

At present, the sanctity of our home here in Vermillion is at stake. Our modest home had been bordered by a cornfield. The cornfield is now a golf course. The mayor says "We should just buy them [us] out and be done with it," which I take as a serious threat. One city council member said, "If someone is injured [by a golf ball], it would be better if they were killed; otherwise the health care bills could go on indefinitely -- say, if they became a vegetable." He is aware of my aneurysm. On the other hand, he is one of the few non-golfers on the Council and a good friend of our attorney, so will he be part of my army or not?

J. D. Erickson
Vermillion, S.D.

Poking the ACLU
In "Progressives and Disability Rights: They Just Don't Get It" you take a poke at the ACLU. I'll second that poke.

Years ago I was discriminated against in a job interview. I took my grievance to various offices that supposedly administered the various laws. Mostly they seemed to want to blunt the force of my efforts and delay things as long as possible -- one outfit took 180 days to decide they didn't want to do anything.

At one point in my travails, I gave the American Civil Liberties Union a call. They indicated they were doing black cases, Hispanic cases, female cases. I hardly expected the ACLU to drop their world-shaking agenda to wipe my nose, but I thought it might have been nice of them to have recommended an attorney or two who did this kind of work at a reasonable cost.

Benjamin A. Graves
Georgetown, CT

What review?
I've read The Bone Collector and couldn't recognize the book from the review you ran ("Unnecessary Traps"). Cal Montgomery is a fine writer, but that piece just didn't touch me. Perhaps if it hadn't been done in the style of a book review I could have liked it as a philosophical musing. I was expecting a review, and this wasn't!

Mary Jane Steinhagen

'Piano' praise
Hurry, Hurry! I want to read Tim Laskowski's book now! ("Piano Playing," Nov./Dec.)

LaVonne Murphy

'Look what we found!' I
I have just found your website and am printing the subscription form for the print version.

I'm one of those people who cut their teeth on the independent living movement and then, depending upon the way you look at it, either graduated into a better paying lifestyle, or sold out and went to work for a disability agency that has more money but who still "doesn't get it."

I work in the developmental disability arena now and sometimes I wonder if the program is set up to help those with developmental disabilities or those of us who work in the system. My position is that of a "resource developer," but my real job is to find ways of not developing resources which we would have to pay for. In California the DD system is supposed to be an entitlement but there is a cap on money. Still, I wonder what kind of a system the ILC system would develop with just a fraction of the money thrown at this particular disability group.

I'm not saying we don't need it; I'm saying that more people with disabilities need an equal shot at the money.

E-Mail Name withheld by request

'Look what we found!' II
I am a college student who was searching for information for a speech and found your website. I was amazed and felt like the voice I was searching for was found. I am the mother of a 12-year-old girl with Down Syndrome . . . All too often all we see are the success stories -- no one wants to report on the housing unit who refused to allow disabled people to rent from them, the FAS babies that are abandoned into group homes or the abusive nature of the people who are inspired to work with disabled people (especially those who are mentally retarded.)

Today I have to speak to a teacher who feels that degrading her students who can't communicate well is the only approach to obtaining the behavior she wants -- or maybe it's her outlet for feeling superior.

You can make laws and even build ramps -- but until attitudes change and the person, not the disability, is seen, discrimination, poverty, lack of opportunities will continue. For many, just the right to make personal choices will be limited and controlled by those who don't always have that person's best interests at heart.

E-Mail Kim DeSimas

UCPA responds to suicide article
I read with great concern your article "Activists Deplore UCPA Statement on 'Physician Assisted Suicide' " (July/August) and found the semantics quite confusing.

Unless I am completely mistaken, the word "suicide" refers to an individual's desire for, and commission of acts leading to their own death. In the case of certain people who are unable to execute their own wishes, this would mean another person, perhaps a physician, carrying out the suicidal intent of the person desiring death. This implies active intent on the part of the individual desiring death.

It is a dreadful mistake and a huge gap in reasoning to assume that physicians would automatically jump on board the bandwagon of death and erroneously assume the right or the awesome -- and awful -- responsibility of ending lives. This smacks of Nazi Germany.

Physicians take an oath swearing to preserve and protect life to the best of our abilities. When it comes to any treatment, no matter who is paying the bill, it is the patient who is the boss -- not the government, not various agencies and not committees. Your interpretation assumes that we will willingly become murderers on request. Furthermore, l must take issue with your faulty assumption that UCPA or its affiliates are somehow not acting adequately for the disabled, and are more concerned with the opinions of parents, professionals and politicians.

Our particular agency has parents and advocates who work tirelessly as volunteers to ensure that young people now and in the future will not be treated as their own children were, and employs professionals of the highest caliber whose motive in working for us is to provide the best care possible for our consumers.

Most of our professionals would earn a great deal more money working outside of our agency. There is an emotional reward that keeps them here that your author doesn't comprehend.

Our mission is to ensure the highest quality of life for an individual. With this provided for in every way possible, many suicidal patients would not request physician-assisted suicide. It is when the quality of life is poor that people feel hopeless and desire death. As the former Medical Director of a hospice at a major medical center, I have seen, countless times, what good pain control, antidepressant medication, good adaptive equipment and good home care can do. As a physiatrist, I have seen people go from hopeless, helpless, and suicidal to hopeful, happy, and feeling a real part of life when the quality of life is good.

to. The real issue is to enhance quality of life. This is very clearly stated. This is, and always has been, our goal.

It is harmful to state half-truths and needlessly deceive people. Rather than squander that precious energy, it would be more helpful to recognize that we all have the same goal, and that to reach it effectively we must work together and stop pointing fingers.

Susan Arlen, M.D.
Medical Director
UCPA of New York City

An advertisement for the book 69 by Bolt which ran in the Nov./Dec. issue had an incorrect address. The correct address for book orders is P.O. Box 7524, Santa Monica, CA 90406-7524.

The article "Parents who Kill" ("D. R. Nation," Nov./Dec.) listed an incomplete online address. The correct online address to find the document is: http://www.quasar.ualberta.ca/ddc/ICAD/misplacedmercy/mmercycontents.html


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