Re: Japanese Ventilator Users
Valerie Brew-Parrish (brew-parrish(AT)juno.com)
Thu, 2 Oct 1997 10:59:33 -0500
Hi Peter,
I read your note to Hiroko and I want you to know how pleased I am that
you have taken an interest in the 20 yr. old SCI patient. I am even more
pleased that Hiroko can help you to help him. Services need to be
improved here in the U.S. but you have painted a dismal life for that
guy. You are probably aware that Christopher Reeve, an actor who played
superman, suffered a high level SCI a few yrs. ago. He uses a vent and a
sip & puff wheelchair for mobility. He is highly visible still on TV.
The disability community is rather annoyed with him because he promotes
cure, cure, cure instead of services. He even says that with the "cure"
there will be no need for "lowered sidewalks"(ramps & curb cuts). I am
sure that someday he will be a staunch advocate for disability rights as
soon as he comes to the realization that he is not going to walk. May be
it is better to become disabled at a young age or to be born with it.
Even in this country people still have problems getting such basics as
wheelchairs. But I was literally astounded when the doctor from Japan
started talking about costs in Japan! Let me change the subject here.
There is a group of disabled people who belong to a group called, "Not
Dead Yet.!" As vent users, and other disabling conditions, we are
terrified that we will be euthanized by doctors who claim we have no
quality of life. We have heard horror stories of euthanasia running
rampant in Holland and the Netherlands. I have read that disabled persons
in the Netherlands wear bracelets that read "do not euthanize me." Is
this true??? Now that I have written a dissertation to you I will sign
off. Have a good trip back to Holland and best of luck to you!
Val