I haven't posted for ages. I have severe CP, spastic quad with athotosis
and dysarthric speech.
Sometimes I think about assisted suicide and its implications for people
with disabilities.
I don't think its the way to go. Sure sometimes I think I would do anything
to be free from the frustrations associated with my disability, as I'm sure
most of you do. I have thought of ending it all for that reason. However, I
really do play a huge role in the community and I feel it is my
responsibility to cast my frustrations aside. I lecture in CP, AAC and
other related issues for Sydney University to health science and medical
students. I sit on the board of management of Citizen Advocacy. I also
consult with politicians about disability issues, and I study Arts/Law. I'm
starting to realise that if people see that you are contributing to
society, they are more eager to assist you.

There are other options than assisted suicide. People with disabilities can
have a good quality of life if they are given the right assistance. Getting
the right assistance is a battle in itself but, it'll come one day.

Fiona

----------
> From: Betty Alfred <[log in to unmask]>
> To: [log in to unmask]
> Subject: Re: assisted suicide (long response - get coffee)
> Date: Saturday, 11 September 1999 19:22
>
> In a message dated 09/10/1999 12:08:21 PM Eastern Daylight Time,
> [log in to unmask] writes:
>
> << What do you think about assisted suicide ? >>
>
> I have said elsewhere that I don't think our society is sufficiently
advanced
> to have proper regard for legalized physician assisted suicide.  We
always
> seem to be given the "intractable pain" scenario when asked to consider
this
> issue, but there is another, more insidious consideration.  May I use my
own
> experience as an example?
>
> When I first became disabled, the first six months or so were a blur of
> confusion, but eventually I adjusted, and adapted quite well.  As soon as
I
> found out about the wonderful world of wheelchairs, nothing could stop
me.  I
> remember being confused and a bit spacy (I progressed so quickly that I
could
> track the changes from week to week for a while), but really, I don't
recall
> ever being devastated.  It was not until I had a new boss who treated me
with
> open and sadistic disdain, and lost my second job, which was like a
family
> situation, that I became devastated.  I was suicidal for several months,
and
> it was the most profound experience I have ever had.  This had nothing to
do
> with my disability -- nothing.
>
> I had a difficult time convincing people outside of the disability
community
> that this was a consequence of losing my community.  I just couldn't
convince
> them.  Nondisabled people are so certain that life with a disability is a
> terrible thing, that their opinion would not be swayed.  There was such
> little regard for the actual causal factors, that any wound that exists
now
> has to do with the fact that they are perfectly willing to see this
happen
> again to anyone.  As far as I can tell, those around me who are
nondisabled,
> or who are not attached to the disability community, have learned
nothing.
>
> If I had committed suicide for the purpose of making a permanent
statement
> about this; if I had sent a detailed letter explaining my reasons to the
> Washington Post, Times, and all the major papers in the world; if I had
set
> myself on fire in front of the White House, I would have achieved
nothing,
> except to feed a misconception that I could not adjust to a disability.
They
> just do not listen.
>
> Why didn't I do it?  Well, for one thing, my immediate family has a
suicide
> under it's belt already.  Sometimes I lived with this agony knowing what
> agony comes to a family when a member dies this way.  For another thing,
by
> this time, I had met people in the disability community who stuck with
me;
> two families are right on this list, and one is in my immediate area.
They
> both ministered to me and showed me that there is a community here.  I
also
> had other disability resources through the Internet.  This was the time I
> needed physical contact with people the most, but I knew that good people
> were there, even if I couldn't touch them.  Third, I was scared to take
that
> final action.  I thought about ways to do it, and came up with a plan,
but I
> was scared to really do it.
>
> Life is good now, but If I had suffered an injury that put me in a
position
> to need a doctor's help to die, that doctor just might have helped me
die.  I
> do not believe that nondisabled doctors have any more understanding of
our
> issues than the nondisabled, nonmedical community, although there are
> exceptions to every rule.
>
> Now I acknowledge one great benchmark in my life: not the one separating
my
> nondisabled life from my life as a person with a disability, but the one
> separating the time before I wanted to die, and the time after.  I will
never
> look at my nondisabled neighbors the same way again -- ever.
>
> There are intractable pain situations, and my heart goes out to these
people.
>  My story is just one story.  But at this time, the question for me
becomes:
> How many more people will die needlessly if physician assisted suicide is
> sanctioned by law?  My other question is this: For the people with
> disabilities who consider suicide, or who have considered suicide as the
> solution, why do they want to die?  What are the reasons?  Is it because
of
> the disability itself?  Or is it because of society's dismissal, or lack
of
> proper regard for them?  If it is because of the latter, then we have
much
> work to do in each of our communities to educate our nondisabled
neighbors.
> Maybe we need to take the bull by the horns and shake these people for
all
> they're worth when we are talking with them about this.
>
> With your permission, I have attached a study that came to me some time
ago
> on a listserv for people with disabilities in the Commonwealth of
Virginia
> (USA).  The comment in the first paragraph seems to be in line with my
> opinion about this.
>
> If you got this far, you deserve a medal -- thanks for reading my story.
>
> Betty Alfred
>
>  <A
>
HREF="http://www.tell-us-your-story.com/_disc58r/00000014.htm#ARCHIVES">Lovi
ng
>  my disability</A>
>
>
****************************************************************************
**
> *************************
> THE REAL FACTS ABOUT DISABILITY AND "QUALITY OF LIFE
> "86% of spinal cord injured high-level quadriplegics rated their quality
of
> life as average or better than average.  Only 17% of their ER doctors,
> nurses, and technicians thought they would have an average or better
quality
> of life if they acquired quadriplegia (KA Gerhart et al., Annals of
> Emergency Medicine, 1994, vol. 23, 807-812).
>
> No differences were found between 190 physically disabled persons and 195
> "able bodied" persons on ratings of life satisfaction, frustration with
life
> or mood (P Cameron et al., Journal of Consulting and Clinical Psychology,
> 1973, vol. 41, 207-214).
>
> The duration of disability was positively related with acceptance of
> disability in persons with spinal cord injury-related paralysis.
Severity
> of disability was of no importance in accepting life with a disability
(F.
> Woodrich & JB Patterson, Journal of Rehabilitation, 1983, July-Sept.,
> 26-30).
>
> 60% of paraplegics reported feeling more positively about themselves
since
> becoming disabled (C Ray & J West, Paraplegia, 1984, vol. 22, 75-86).
>
> Interviews and tests administered to 133 persons with severe mobility
> disabilities revealed no differences between them and the nondisabled
norm
> on psychosocial measures. In another study, no significant difference was
> found between persons with severe disabilities (requiring wheelchair use
and
> daily personal assistance) and persons with no disabilities on quality of
> life measures (R Stensman, Scandinavian Journal of Rehabilitation
Medicine,
> 1985, vol. 17, 87-99).
>
> In a study of life satisfaction of quadriplegics, fewer than a third of
> those who used ventilators expressed dissatisfaction with their lives.
> There is evidence that life satisfaction scores are higher in persons who
> have had more time to adjust to disability (JR Bach & MC Tilton,
Archives
> of Physical Medicine and Rehabilitation, 1994, vol. 75, 626-632).
>
> Spinal cord injured rehabilitation patients were similar to the general
> population on self-ratings of depression, yet hospital staff consistently
> overestimated the patients' level of depression (LA Cushman & MP Dijkers,
> Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196.
>
> Three-quarters of persons with spinal cord injuries rated their quality
of
> life as good or excellent.  Amount of paralysis made no difference, but
> people who used ventilators rated their quality of life higher than those
> not needing ventilators (GG Whiteneck et al., Rocky Mountain Spinal Cord
> Injury System Report to the National Institute of Handicapped Research,
> 1985, 29-33.
>
> Elderly paralyzed veterans rated their quality of life higher than
similarly
> aged men without disabilities (MG Eisenberg & CC Saltz)."
>
> Paraplegia, 1991, vol. 29, 514-
>
****************************************************************************
**
> *************************