Where Can You Get a Good Disability
Advocate?
A Response to Wendy Brower’s “People
Being Duped”
by
Katheryn J. Ware, RN
I have followed Terri
Schiavo’s situation for several years.
I have delved into many aspects of her life as a woman with disabilities.
I have been bewildered by a single question since Terri’s death.
Why did some disability advocates abandon Terri? I have heard them
say it is a right-to-die issue, it is an end-of-life issue, or it
is a private matter between family members. I am the mother of a
ten-year-old boy with profound mental retardation, quadriplegic cerebral
palsy, and epilepsy. If Terri Schiavo is not a member of the community
of people with disabilities, then neither is my son. Reading articles
and editorials written by otherwise respected disability advocates
that snub Terri and turn their backs on her first scares me, and
then infuriates me. Terri Schiavo was a woman living with disabilities
deserving of all of the same rights and legal protections as any
other person with a disability. Terri Schiavo’s starvation
is a disability rights issue.
The most tenacious encounters that I have had over Terri are with
those on disability rights list serves and forums. The more vicious
attacks on Terri are also coming from the group of people that should
be standing in support and respect of Terri as a woman living with
disabilities. Disability rights activists are taking the opportunity
to use Terri to bash Republicans and scorn President Bush. Their
anger at Conservatives blinds them to their own hypocrisy.
I have wondered why disability advocacy groups and individuals who
would otherwise support and advocate on behalf of people with disabilities
would not embrace her into our community. Is it that some less disabled
people find it difficult to relate to those with profound or severe
cognitive impairments? Are people that have disabilities limited
to their physical realm afraid to have that close association with
a person that has profound mental retardation or severe brain damage?
Are parents of children with disabilities that are less cognitively
impaired prejudiced against us parents who have children with profound
mental retardation and severe brain damage? Is it that you might
offend your political ideologues? What is it about disability advocates
that they so vehemently want to exclude Terri Schiavo from being
called one of us? What are you afraid of?
I want Terri and other people with severe brain damage and profound
cognitive impairment to have access to advocacy. I want this for
her for no reason other than she was alive and had severe disabilities.
Terri Schiavo was not
terminally ill. Terri Schiavo had a small gastrostomy tube that
provided her with three canned meals and some water every day.
Her husband had to, at one time, provide written consent for the
short surgical procedure that resulted in Terri’s
tube. She was not in imminent danger of death. Terri did not have
to live in a nursing home. That is why we lobby our elected officials
for waivers and client driven supports.
I wonder how many people
live just like Terri Schiavo in Minnesota? How many children and
adults use both a g-tube and have severe to profound cognitive
disabilities? What is the difference between these people and Terri
Schiavo? The only difference is that Terri’s
guardian chose that she should be dead. There is absolutely no proof
that this is what Terri wanted. Other people living just like Terri
have guardians and parents who choose that they should be alive.
Why are disability advocates so quick to give power to a guardian
that chose death, rather than a family that would have chosen life
for Terri?
Many non-disabled people
have said, “I would never want to
live like that,” when they referred to Terri. Their next logical
conclusion is that neither would Terri or anybody else. You might
expect that reaction from people whose lives have not been touched
by a disability. Ask yourself how many people would make the same
comment in regard to your disability, or your child’s disability
even though it might be a less disabling condition than Terri’s.
Does it bother you to think that somebody might be saying about paraplegia,
what they said about Terri? (A whisper as you wheel by: I would never
want to live like that!)
I agree with the beliefs
of many other disability advocacy groups, such as Not Dead Yet
and The Association for Persons with Severe Handicaps (TASH). TASH
has a resolution that reads, “TASH believes
that all people, regardless of their disabilities, have a right to
life, liberty, and protection from treatment that causes pain or
death. TASH strongly opposes the position that it would be in the
best interest of any person to die rather than live with a disability.
TASH strongly opposes any cessation of nutrition or hydration for
people regardless of the severity of their disabilities.”
The most important point in this debate is not if the government
should have gotten involved, or President Bush and Congress, or Michael
Schiavo or the Schindlers. The most important thing to consider is
whether or not Terri was a woman living with disabilities.
I conclude, and hope to persuade you, that Terri was a woman who
was alive and living as a person with disabilities. She was not any
more terminally ill than I am, or you are. There should be no other
criteria for disability activists and advocates to consider. Terri
might have been a subscriber to Access Press. She deserved our advocacy,
respect, and support in the same way that my son does. The disability
advocates that denied Terri membership in our community should have
a disclaimer in their membership forms and subscriptions excluding
those with feeding tubes that are too cognitively impaired.
When they decide your disability is a fate worse than death, who
will be there to advocate for you?
Brower Response
My article about Terri Schiavo stirred up emotions and controversy.
Good! People with disabilities and their advocates should discuss
this thorny issue and form their own opinions. However, I stand behind
mine.
A just society would easily embrace and give equal rights to all
people regardless of race, color, creed, sexual orientation, age
and disability. Unfortunately, people with disabilities, just like
other marginalized and/or minority groups, must fight passionately
for their rights. And the fight never ends. Just ask those who fought
so tenaciously for the Americans with Disabilities Act.
Self-determination is
a highly cherished value of mine. This value is reflected by applying
my right as a Minnesota citizen to express my wishes in an advanced
health care directive, known as a Living Will. Terri Schiavo didn’t
do this. Others determined her fate.
