Electric EDGE
Web Edition of
The Ragged Edge
March/April 1998

Electric Edge


Adept at reporting

My compliments to Josie Byzek and the Ragged Edge on your outstanding article on the California debate over deinstitutionalization. The article was a clear and informative articulation of the issues in California and nationally. The author also did a great job uncovering important sources of information. If the San Francisco Chronicle was as adept at research and reporting as the Ragged Edge, we would all be a lot better off.


Oakland, CA

Distancing also isolates

The strident first line of your report on Not Dead Yet's action at Harvard's conference on physician-assisted suicide - "The Catholic Church does not speak for us" - ('Not Dead Yet protests euthanasia conference at Harvard," D.R. Nation, Jan./Feb.) reports what appears to be a kneejerk reaction that calls for further explanation. Did some Catholic leader suggest the Church was speaking for Not Dead Yet, making it a pressing need for NDY to disassociate itself from such a statement? Or was it just another effort to affirm that NDY will have nothing to do with those organizations recognized for their ongoing opposition to physician-assisted suicide - organizations which may not always agree with every issue we support?

If I'd been invited to speak at Harvard as both the national spokesperson for the U.S. Catholic Church and as a longtime disability advocate who has organized events under the banner of NDY, would my remarks have come under assault because I pray and have a faith life?

There is no question that our unique voices as advocates with assorted disabilities must be heard and respected. But from my position within the Catholic Church, I find an expanding awareness of the potency of "our" voices. Efforts to distance NDY utterances from mainstream expressions of concern, while they do make the point that no one can truly speak for another, also further isolate us from the broader campaigns. Does segregating our efforts make good political sense?

I have heard the arguments that we, the disability opposition to physician-assisted suicide, must separate ourselves from those groups perceived as having longterm and ongoing opposition not only to this issue but to other "life" issues. But will our disclaimers prevent the same sorts of attacks directed toward the Catholic Church from being focused in our direction if we would ever gain the same level of national recognition? Currently we, the membership of NDY, may feel diminished when "they" call us pawns of our more powerful companions in this struggle. But is denouncing potential allies our only strategy to avoid such demeaning characterization? We might seem more relevant to the national debate if we were to acknowledge that we are one with a growing number of associations and organizations opposed to turning doctors from healers to killers.

When informed that some leaders within NDY did not want members who prayed (or who based their vigorous defense of the value of life in spite of "flaws" on spiritual grounds), I turned to my colleagues Justin Dart and Evan Kemp. Evan, a fellow Catholic, told me he was considering dropping out of NDY if he could not modify this stance. Justin expressed disappointment that religion was viewed as a negative force by some leaders with NDY as well as the broader disability community - noting that this grounding in religion had been important in other civil rights movements.

Diane Coleman, a widely recognized and major leader of NDY, approached me after our successful vigil on the steps of the U.S. Supreme Court a year ago to thank me and my staff. "This wouldn't have been as successful without your efforts," she said. I responded, "Don't let them separate us from one another . . . . don't let the Hemlock Society's rhetoric separate "us" from Not Dead Yet." For Hemlock's carefully crafted, politically motivated statements accusing Not Dead Yet of being subservient to the Catholic Church, or the hospice movement - or even the far right religious campaigns - are not meant to empower us. They are meant to weaken and separate us from the mainstream movement against physician-assisted suicide. When engaged in political campaigns, we must focus on our primary goal, not allowing other issues about which we disagree to prevent us from forming coalitions and alliances. And this is a life-and-death campaign for real!

At a NDY demonstration we organized in front of the National Press Club in July, 1996, I grasped and held onto Jack Kevorkian's hand - hopeful of sensing some trace of his spirit, his soul. But I clutched at a frightened black hole: a powerful force seeking to suck out the warmth and morality of our nation. His team, which promotes negative stereotypes and demeaning assertions, must be stopped and countered. We need to expand the circle, not restrict it - adding our voice and demanding respect for our views and stories. It is we who can tell it like it is, the "piss and puss" which is what life is really all about!
National Catholic Office for
Persons with Disabilities
back to top

Cocoons and chicken soup

I believe that just as we have been cocooned in this rights movement by society ("It's a cocoon," Jan./Feb.), we have also done a great deal of self-cocooning. Some might call it snobbery, others might focus on the hierarchy that has been discussed. But the bottom line is that we have a message and if it doesn't get put out, then who hears it?

Sometime last summer (I think), I, like many others, got an e-mail saying there would be a Chicken Soup for the Handicapped Soul. ("Chicken Soup Is Pabulum, say disabled people" Nov./Dec.) I had never paid any attention to the Chicken Soup books, but immediately responded by saying if they were going to do a book I thought they should check out the rights community and language-they responded by saying they did not want to offend anyone and would check it out.

I happened to have a piece I wrote years ago about my wheelchair as my best friend that has never been published but that nondisabled people who have read it have really resonated with, and I thought it might fit their criteria. But I was still uncomfortable. So I e-mailed a friend of mine who is also a writer, has a significant disability and has been involved with the disability rights movement longer than I and asked her if she knew about this and what she thought.

She said she had some of the same misgivings I did, but that getting your message published in a book read by millions could have a great impact, even if you didn't like the books themselves and the other material in them. I thought about that and finally decided she was right. The important part is not always the vehicle, but delivering the message. I sent the essay to them.

In the meantime, I started looking at the plethora of Chicken Soup books in the stores and who was published in them. Several struck me in that the authors were people I admired (the only one I can remember offhand is Mark Medoff, author of the play "Children of a Lesser God"). I started thinking about the fact that many well-known authors (from those who write schlock to those who write far more deeply than many of us) were willing to be in these books.

My conclusions: Writers write. If you write for someone beside yourself, then you need somehow to get published. There are many ways to do this. One way is through books that you may not think are the most wonderful media out there. But they are out there and if you are in them-without changing the content of your message to meet someone else's criteria-then you, too, are out there.

I am less and less enchanted with the "politically correct" censorship that we seem to believe we have the right to impose on one another. It is one thing to have opinions and be vocal about one's own viewpoint. It is quite another to be vocal about someone else's viewpoint. To paraphrase: censorship is censorship is censorship.

A final comment: I have never heard from the Chicken Soup people since submitting my essay.

Las Cruces, NM
back to top

Chicken Soup does nothing

I am so tired of trying to prevent my child, who happens to have Down Syndrome, from being treated special or different! Chicken Soup does nothing to help me get him into regular school or the regular Boy Scout troop. He has the real world out there he wants to be a part of as an adult--why must he be segregated into a special childhood?

I do agree he needs special help to accomplish some of the things he sets out to do, but everyone benefits by help when they need it. Just because my kid has a label that is handy to hang his shortcomings on doesn't mean it is the be all and end of his life. He is first and foremost a child, then a boy, then a lover of videos.....and way down the line a person who is handicapped by a label. Chicken Soup perpetuates the myth that the most important thing to know about my child is that he is has a disability label.


back to top

Medicare dumping that's legal

President Clinton wants to extend Medicare; conservatives are saying "nice politics bad policy." Would love to ask the conservatives why, if there's no money for Medicare, are private employers allowed to dump their disabled retirees on the taxpayers and Medicare?

If you think you have protected yourself from future disability with comprehensive private coverage you will have a real discovery if you need to use this coverage. If you are disabled you cannot have any coverage other than Medicare, and you won't find this out until you need to use the coverage.

Private employers and insurers, with the full support of HCFA, have rid themselves of the cost of disabled retirees based on disability. Employers like Equitable Life Assurance Society New York (recently bought by AXA), a global billion dollar company, get to dump their legal obligation on the taxpayers. This happened to me in October, 1993.

The worst part of this dumping is that Equitable hired Allsup Inc, a company that makes it's money by helping in my case Equitable, to send out letters demanding the return of all benefits paid as of 8-10-93, leaving the retiree responsible for paying. The retiree can pay or the vendor can repossess the wheelchair.

The public is told Medicare is broke, needs to have its growth slowed, won't be there in 2010, and so forth, but our government ever so quietly bends over backward to assist private business screw over disabled retirees - people who cannot fight back.

Now you could feel that being dumped on Medicare is a good thing -until you see that Medicare denies claims based on the mood of the persons doing claims. They can suddenly decide they won't be buying electric wheelchairs anymore because they feel they are not medically necessary and manual chairs cost less. Repairing the chairs is done per a schedule dictating a chair will only break down a fixed number of times. Should it break down more, it stays inoperable and the recipient stays in bed.

If Equitable Life Assurance honored their policies instead of having Medicare pay, Clinton's idea could be funded.

HCFA has not made one objection to paying for Equitable's responsibilities - so they must not be as broke as everyone is claiming. The public needs to understand the devious actions of corporate America and HCFA. By this dumping Medicare will more quickly go under - which is the stated hope of conservatives.


back to top


In our last issue, we listed an incorrect URLfor Nadina LaSpina's website . The website can be found at: www.netcom.com/~nlaspina

The journal which the Society for Disability Studies publishes is the Disability Studies Quarterly. David Pfeiffer is resident scholar in the Hawaii University Affiliated Program on Disabilities as well as a visiting scholar in the Political Science Department at the University of Hawai`i at Manoa.


Write to The Ragged Edge

Back to cover page
Table of Contents
© Copyright 1998 The Ragged Edge


This Website produced by Cliffwood Organic Works