After Terri Schiavo:

Why the disability rights movement spoke out, why some of us worried, and where do we go from here?

from article:
What WAS the disability rights point of view? Was there one?

That this question can even be asked with seriousness points to the way people -- including disabled people -- understand the concept of a "disability rights movement." Not all African-Americans (formerly called Blacks, and before that, Negroes) supported the civil rights proposals advanced by groups such as the NAACP or, during its day, the Southern Christian Leadership Conference. However there was no doubt in anyone's mind -- certainly not the media's -- that there were groups that spoke for the issues; that collectively were seen to represent the issues of the "civil rights movement." The women's rights movement has its groups as well, as does the gay rights movement.

~snip

Why do crip spokespeople, and individual crips, keep comparing themselves to Terri Schiavo?

~snip

The only way disability bigotry of the "better dead than disabled" school has any chance of being stamped out -- or even dislodged a bit -- is if the disability rights movement is willing to speak forcefully and publicly about the tie-in between emerging public policies that in the guise of cost containment and choice in dying both promote futile care policies and define feeding tubes as "medical care," and the look-the-other-way stances of progressives and right to lifers alike as Medicaid is cut, healthcare services are cut and anti-access judges are appointed to the federal bench.

Here are the reasons, as we understand them, that "functioning crips" aligned with groups like Not Dead Yet compared themselves to Terri Schiavo:
1. She was not terminally ill (see article for discussion)
2. A feeding tube is not medical treatment. (see article for discussion)

~snip

Something else we heard, coming through the opinion pieces and letters to the editor from crips, and from emails to Ragged Edge, was that people who are not disabled, despite what they think they understand and would want, have no real clue as to what it is like to live as a disabled person. And there is no way they yet that they can know now what they would really want once they became disabled. Once they had time to adjust, that is.

in-depth article at: http://www.raggededgemagazine.com/focus/postschiavo0405.html


Please do not post if you are going to rehash aggressive cliches again (ie "She wasn't disabled" "She was dead for 15 years", etc).

I posted this article to help people understand our position and concern for the big picture.

Please do not post if you are going to rehash aggressive cliches again (ie "She wasn't disabled" "She was dead for 15 years", etc).

Really, this is awfully presumptious of you.

This was not about involuntary euthanation. This was about honoring Terri's expressed desire to not be kept alive in the condition she was in. I resent the 'not dead yet movement' aligning themselves with the fundy-fascists who would like to deny any of us the right to die. F them all.

Thanks.

"2. A feeding tube is not medical treatment. (see article for discussion)"

Bullshit. In Schiavo's condition it constituted force feeding. She had no capacity to agree to it.

Life support measures like forced, mechanical ventilation and forced feeding are indicated in short term conditions. They're only indicated in long term conditions when the patient is able to consent to them or in infants and children with a capacity to improve as they age.

Anything else is barbaric, prolonging death instead of preserving life.

That sentiment is "bigoted"? So if I -- as an individual -- decided that for me, living life as a quad on a ventilator after an accident is no life for me and I refuse to accept medical treatment, I am a bigot for holding that view? Sorry, but no amount of time "adjusting" would make me want to live that life. And that should be my choice to make. If you decide otherwise and choose to continue your life under those circumstance that is your choice, as it should be.

As someone who has people with disabilities of all kinds in her life, I support 100% I access, funding, and the vast majority of the things the DR community want for themselves but when it begins to infringe on my right to make such a personal decision about how I choose to live or not live my life, I will take issue.

My partner has a hearing disability. You wouldn't believe some of the outrage and vitriol on the part of the deaf and hard of hearing community on the subject of cochlear implants. Cochlear implants are a miraculous device that allow some profoundly deaf patients to hear.

Some people are just control freaks.

I don't want Cochlear implant. When it first came out, I thought it'd be a little chip implant inside the ear and then it would be it...kinda like Bonic Woman..wow, cool, but learned that I'd have to wear snap on back or side of head, wire and box & all and is not waterproof..No thanks. Cochlear implants help some, but not all and it does not make a profoundly deaf hear the way normal hearing people do. I met a deaf guy while back who told me he had to have it removed because in cold or wet weather, it was causing him headaches and that it did not really help him. I can hear with a hearing aid on, but not the same way you do so I haven't bothered with it for several years now. If a deaf person wishes to have it (cochlear implant) done, fine with me. It's a choice.

What I disagree with is that some hearing parents with a very young deaf child rush to have it done so that their child would be like a normal hearing person. Let that child grow and when they're old enough, they decide for themselves. I also knew a 15 yr old deaf guy who was bitter with his parents for doing that to him when he was a baby. Being deaf is not a bad thing, just different. We're sensitive to vibrations, have our own language, etc., even does not stop us from being good dancers or music ans if we happen to have a talent for it. Some deaf people must be in deaf culture all the time and some don't..like me. I like to balance in both worlds. :)

I understand why an individual wouldn't choose a CI for themselves, and I understand that a deaf cultural identity is strong and the deaf and hard of hearing community is very supportive. But in the end the decision needs to be left to the individual and their family. I do disagree with deaf and hard of hearing individuals who are opposed to others who choose to get a CI (or receive other treatments, such as a hearing aid or a stapedectomy).

If one chooses to have a CI, then I support them if it makes them happy and comfortable. Everyone is different. (that is if they're old enough to decide for themselves)

and then get back to you. Schiavo's case is very, very sad and so very complicated. Doctors aren't always right, correct. They are not God. I understand that long time ago, deaf people were misdiagnosed as mentally retarded and were often locked up because they were unable to communicate as effective as a normal person. Sign Language was once scorned and thought to be weird. Now it's very much accepted as a foreign language. Deafness does not have anything to do with intelligence.

Terri's brain, they said, was almost completely gone except for "brain stems". Did she have any kind of consciousness? What about super- consciousness? Sub-consciousness? UN-consciousness?? Does it operate independently outside of physical world? What degree of awareness did she have? We don't know..not even doctors. I think there should be more research on this one. Well, in any case ... I really believe it's wrong to kill someone who is not terminally ill. Their spirits will decide to leave on their own and not for us to decide unless they themselves wish it so. In Terri's case, it's still hearsay that it was her wish.

OK, I am going to read the whole article and get back to you later. (I am at work) :)

I am interested in your take on the article. I appreciate that you responded to Deek's request for feedback on the article with a promise to read the article and actually give feedback. Thanks!

Please don't respond unless you agree with me and like my article.

RE: do not post if you are going to rehash aggressive cliches again (ie "She wasn't disabled" "She was dead for 15 years", etc).

I have been living as a disabled person for over 18 years. I know what it's like to live as a disabled person.

No matter what words you use, or what commands you put forth...

TERRI SCHIAVO WAS NOT DISABLED!

artificial life support with no hope of recovery.

IMHO, all this "disabled" talk was the result of desperate Republicans trying to recover from the political faux pas of the decade and using anything the spin doctors thought could blunt the blow.

:hi: you are often in my thoughts.

That crappy article is unintelligible.