Dear Joy,
Your point is very well taken. I think the point Betty and others are trying
to make however is not their right to make a conscious decision to live or
die but the right to have access to good medical care, especially in an
emergency, when they can't speak for themselves. The simple fact that good
medical care is denied to people with disabilities because the medical world
feel their quality of life isn't worth the time nor money expended. Heck
just routine medical care is often denied because of a disability as Mag's
dental letter so aptly brought forth. I experienced it with my son. He went
into cardiac arrest when he was still in the 2 pound range in the NICU. The
doctors did honor our request to continue heroic measures despite very heavy
pressure to from them to have us let Alex die because he was bound to have
disabilities. Alex also has severe reflux. It was so bad every bottle he
took was vomited forcefully. I was patted on the head by the specialists who
said that's what you get with severe brain damage. It wasn't until a school
PT refused to work with him when he was 15 mo old saying he was burning
muscle( which included his brain and heart) and routine PT would bring on
another cardiac arrest that the doctors moved( because another medical
called them on the lack of care not because of my concerns) that they did
reflux surgery and installed a feeding tube when  he was 18 mo old. He was
just under 17 pounds. Even if Alex was terminal palliative care would have
been appropriate. That was 18 wasted months of his life that he struggled to
just survive because the medical staff felt his disability didn't warrants
good medical care.  Once Alex got some nutrition and calories in him he
began to thrive and take off cognitively. I posted recently about him going
into regular 1st grade next year after being in Spec Ed since he was 5 mo.
An interesting article pertaining to this subject can be found here:
http://detnews.com/2001/editorial/0104/09/a11-208493.htm
Joanne

-- Original Message -----
From: - Joy - <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, April 21, 2001 7:49 PM
Subject: Re: From another list... Life Worth Living.


> I agree with you, Betty.  My goal is to become a disability rights
attorney,
> working on representing ADA litigants and strengthening the legislation.
> But, I think you misunderstand my point...
>
> I just don't understand why euthanasia is a disability rights issue.  To
me,
> a disability rights issue is something that affects all disabled people
> uniformly - barriers, discrimination, etc.  The right to life/death is not
> something that people with disabilities can all agree on and present a
> united front on.  Therefore, it's less of a disability rights issue than a
> human rights issue.
>