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Mary Johnson's Activists pro, con on involvement in Schiavo case


My mind goes on alert when the phrase "private family matter" gets used. '

I am in strong agreement with all the advocates who feel that removing Terri Schiavo's feeding tube was a dreadful mistake, and that Gov. Bush and the Florida Legislature were correct to intercede and save her life. Alan Toy, in his article, expressed opinions that I do not agree with. But by writing, he shared thoughts that may be shared by many others in our movement who have not had the boldness to say why they disagree on this topic. I appreciated his raising these thoughts for our consideration.

By sharing his thoughts publicly, Toy gave those who support Terri Schiavo's right to live points to respond to. A good counterpoint is worthwhile, and helps us to solidify our view. If we can't at least have a civil debate with our friends in the movement, how can we expect them to ever get through to our real opposition?

Toy is not alone. I have heard respected journalists, politicians, and the ACLU speak out saying that Terri Schiavo should not be kept alive. I have to believe that they have only heard part of the story -- the part that the media has misreported through its consistent representation of her as "comatose" or "brain-dead." I came to oppose her death because of reasoned arguments and compelling evidence that were shared with me. I have since shared those arguments with others.

The more those of us who support her right to live speak out and explain why we feel this way, and why we see this as a disability rights issue, the better we will do. Personal attacks on someone like Alan Toy, however, are a real misdirection of energy. He's a disability advocate, and we need all the disability advocates we can find! I've been telling reporters for the past several weeks, "We must not make one's ability to eat independently a litmus test for whether they are allowed to live." We also must not make being in agreement on all issues the test for whether one can be treated respectfully.

Brewster Thackeray, Washington DC

I have a four-word response to Mr. Toy: Typical self-serving position.

It's really too bad when someone who claims to be fighting for the civil liberties of the disabled can go around spewing such bigoted venom into print and actually get support from his fellow activists. Seems that those who think like Mr. Toy want equality -- but only as it applies to themselves. To heck with anyone else who doesn't happen to fit their ideal. Seems like that's what they're trying to fight against in the able-bodied world. Perhaps Mr. Toy's physical disablity is not what has been limiting him, maybe it's his self-serving thought process.

Melanie K, Alberta (CANADA)

Ending caregiver abuse was one of the highest, if not the highest, priorities in a survey done of women with disabilities. Why didn't Toy include it in his list of work priorities as a disability rights activist? This omission highlights how the combination of gender and discrimination affect the lives of women with disabilities, an issue that has been largely ignored by the mainstream women's and disability rights organizations.

The compelling issue about the Teri Schiavo case is its relevance as to whether a woman with a disability will receive equal protection under the law. Whether any other person, disabled or not, is comfortable imagining him/herself in Ms. Schiavo's position, is legally irrelevant. Whether you would find value in having a relationship with her, as her parents do, is legally irrelevant. Ms. Schiavo has not lost her legal status as a person. For now. My mind goes on alert when the phrase "private family matter" gets used. The arguments being put forth by the right to die folks sound eerily similar to the ones heard not so long ago about problems like spousal rape and domestic violence in general. The fact is, a high percentage of crime is committed by family members against one another. And, no, I'm not shrieking, "Murderer!" at Mr. Schiavo. I'm pointing out exactly why scrupulous adherence to the law is so critical here; why it's so critical to women with disabilities as a group.

Ingrid Tischer, San Franciso

I do not feel that Alan Toy was being as dismissive of persons with mental disabilities as is being charged. What I feel you are seeing is finally an honest discussion on the right to die with dignity, and how differently we all see the issues. Assisted suicide is a very personal issue that I am sure many of us have thought about at one time or other. It is often shadowed by what we fear the most, personnal experience, religious belief, the feeling of being unvalued by society -- on and on. It is an issue the American public can not agree on anymore than our community can. What makes existence valuable is very very different for each of us. For some, ending up without the ability to communicate or make decissions for ourselves and and needing to rely on others for our total everyday existance is frightening beyond imagination. For many, an existence such as Terri Schiavo's is not life as we believe it should be.

I am writing this from the point of view from someone who has suffered over a year of total bed-ridden existence, who has lost the total ability to walk for at least a year, has lost the ability to even lift a cup of coffee without agonizing pain. I live each and every day in pain not knowing if I can sit up or walk from one day to the next. And this doesn't scare me????? Why, because I learned there is life after disability. But if you asked me what I fear most, it would be losing my ability to communicate, followed by having to rely on others to take care of me --giving up any form of independence. I cannot imagine living the life Terri now lives.

And because of this, I have had an in-depth discussion on what I would want done if I were as severely disabled as Terri has become. Yes, I know all the discussions about the denial of therapy, medical treatment etc. involved in this case. And yes. I know about the questions as to the husband's part in those injuries. But setting this aside, the important point here is I have made it known what I want. And I am putting it in writing.

Herein lies the whole point of the discussion: No one really knows what Terri wanted. When we do not know what someone wants, then everything possible needs to be done to protect those who cannot decide for themselves, or communicate what they want. The innocent must never be taken advantage of or devalued because they do not meet someone else's thought of what is worth living for.

Francie Moeller, Guerneville, CA

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