Where Can You Get a Good Disability Advocate?

A Response to Wendy Brower’s “People Being Duped”

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.