Bioethics in Seattle….

May 17, 2007 at 1:50 PM (Uncategorized) ()

Obviously some part of the organizers of this panel discussion   

had hopes for some substantial change in the process of decision making regarding children with severe impairment.

But it feels like “Maybe if we give a seminar, those who disagreed with the decision will go away???”

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As we speak…For Blogging Against Disablism Day 5/1/2007

April 30, 2007 at 6:23 PM (Assumptions, Attitude Adjustment, Disability Blogging) (, , , , , , , , )

As we speak or type, or sign….

First the good news…there has been what I can only call an explosion of blogs by and for and about people with disabilities and their allies in the past year…it’s tough to keep up, but fabulous to see so many. They aren’t comfortable simple, easy ‘happy happy’ stories…but they matter, and they give a glimpse into the worst and the best that happens around us, to us, and because of us, a joyful, painful, scary, wry, complex story that needs to be written. We’re writing, speaking, signing, typing all over the Internet and beyond into the mainstream media a time or two.

But, as we become more ‘visible’ the social model of disability, that theory that says that architectural barriers, as well as negative attitudes, stereotypes and prejudices about people with impairments ‘disable’ us more than physical difference ever could. rears up and gives us a new version of an old standard.

The idea that because we’re physically different, or our thought processes might be different, or our method of communication different…We shouldn’t have had an opinion, particularly about the Ashley treatment. Those who agreed with the procedure were outraged at our outrage, angry at our anger, snarky at our snark, or just plain clueless. Many spoke their mind in such a way that indicated that us *having* an opinion was so obviously riduculous and wrong that a ton of slurs came our way.

Excuse me???

We don’t *get* to have an opinion????

About *ourselves* or someone like us…What? We don’t *get* to have an opinion? We aren’t allowed to think? To question? To research? To try to explain to the able?

Why the *hell* not?

When the Ashley story broke, there was so much anger, even hate, that we would dare to wonder at what led to the decision to treat her in this way.

That almost bothered me more than the treatment itself. That it wasn’t just that the concerns of the disability community were treated as though we weren’t there…that was the old way, the pre-blogs-on-the-rise way…

The new way to “disable” our concerns was to be affronted, bitter, angry,spiteful that we *dared* to raise the questions that must be raised, if we’re to advocate for others of our tribe, the disabled, to be spared this… that we should just shut up and be quiet and be grateful that there were caregivers for us….

We’re not going to the back of the Internet.

There will be no wall built at some virtual “border” to keep us from writing.

There are no great flights of stone steps we must crawl up.

Our opinion has been hidden, limited or *missing* from discussions about medical treatment, education, employment,access, travel, architechure,institutionalization, for most of history.

It’s here now, and disagreement is expected, certainly. Examination of why we feel as we do. But not dismissal. Not abelist arrogance. (or worse condescension, the verbal equivalent of the pat on the head of a beloved pet…”That’s nice dear, now go sit back down.”)

*Listen to us!*

Before we’re gone and you can’t learn what you need to learn from us…

That there *is* *no* *normal!*

Just difference all ’round.

That we have an elegant and unique dignity all our own.

Before we and those like us are ‘perfected’ out of existence, or warehoused, or killed, or forgotten.

*Listen to us.*

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CNN: Update on 1 10 2006. On Epic-Sized Cluelessness: Further discussion of the Ashley Treatment

January 9, 2007 at 2:49 PM (CNN) ()

they have their guest. Give Paula Zahn Now a watch tonight…8 eastern, I believe a disability rights attorney who is also a dad who cares for a son with impairments will be one of the guests.

I believe he did well.

Also saw great stuff featured on Paula Zahn Now tonight. They went to the blogs! here, from David

And here, from Nuff said.

and this,
from Penny Richards.

And then the able panel, just split the argument predictably making the “but I could never caregive like this” argument, effectively watering down all of the good stuff that went before…and none of them are caregivers…

For a moment there, we saw the light of day.

I’ve updated and taken away the “optimist” line, because of this from the Edge Centric Blog. I had not seen the poll listed, before I was all “maybe this is the start of a good thing.”

Evidently caregivers and ethicists are the only ones allowed to decide on major surgeries for the disabled, hence this ridiculous poll.

Imagine me cursing (in three langauages now) the foulest nastiest curse words you can think of.

Disabled *people* (or if their caregivers are not also their advocates), *their* advocates *should they be young enough or cognitively impaired enough that they can’t assent) should have been a third choice on the poll mentioned!!!! and it is an *obvious* goddammed choice!

Then it covers everybody.

Caregivers

Ethicists

And the disabled.

The poll then would have been the online represetation of what I see as the correct way to have a national debate about the issues this raises.

Picture a three sided, triangle shaped table. One side has a representative sample of caregivers, paid, family, or friends. The second side has representative docs and medical ethicists. The *third* missing side is disability rights advocates and disabled teens and adults with enough cognition to join in the discussion. This is a national debate this country must have, but *all sides* of this table must be represented, or it is a *false* and *incomplete* discussion.

Last time I carry water for this branch of the media. Ever.

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It begins with Ashley.–4th and final update

January 4, 2007 at 7:20 PM (Mad Medic Thursdays) ()

As I thought…not a word from the disability community was presented onscreen. [Update/ Modification: they are having a disability attorney who also is a caregiver for a disabled son on a new night 1-9 2006]They did have an ethicist who took the position we need a that society should assist the parents with tech and support and another who basically said, [I’m paraphrasing here] We don’t deny patients Prozac because it alters them, so why not have this treatment…both ethicists were, of course able and male.

2nd Update January 8 2006.

On CNN tonight: Paula Zahn Now is running this story tonight January 8th 2006 @ 8:00 EST
I’ve emailed them Mary Johnson’s analysis listed below, but I’m not holding my breath waiting for them to use it.

I’m trying to stick to the facts, to the level of cognitive impairment that this girl has…

and as I think further, I’m half wrong…no one actually knows to any degree of satisfactory certainty what kind of inner life a three month old child has, and how it might be adversely affected by not being permitted to develop.

I *hope* that this is just misdirected love for their child and I will assume that.

Here are the troubling things about this for me.

If we begin here, in the case of severe cognitive impairment, none of the sympathy given the parents does *anything* to assure me that when the *physician led ethics committee* agreed to this, that there was any kind of discussion of “this far, but no farther.” They aren’t Mengele…there shouldn’t even be a “ok” for the cognitively impaired but not for the rest….and *as* for the rest of us….I didn’t hear:

“We, the educated medics, would *never* consider this kind of involuntary bodily mutilation for a person say who was *just as physically disabled and difficult to move as Ashley,* but will have the brain, and emotions and sentience of an *able adult.*” I am not convinced that those of us less impaired than Ashley (I have cerebral palsy, asthma, and other impairments) aren’t *put in danger * of losing rights, and quality and nature of our lives when these things are permitted to take place.

This *isn’t* about the parents at all. I don’t dispute that they believe they are doing the right thing by their daughter. Truly *ethical* physicians *would have stopped this.* Also, if we watch out for the rights of “the least of these,” we are also protecting ourselves. To the parents I say…a Hoyer or other lift isn’t “impersonal.” It can be *freeing* for the parents.

Yes, those of us whose impairments are “nothing like Ashley’s” as the doctors suggest have *every obligation* to fight against such things, to have a hand in making sure that such things are *never thought of as ok,* so that such can *never be done to us!*

That said, if it had simply been a hysterectomy, I would have found that “troubling, ” but not the dangerous beginning of a slippery slope that I see this as.

For the record.

My parents were told I’d be a mental vegetable.

I have a Masters. I’ve been married and widowed.

Early diagnoses can be wrong, or overturned by advancement.

And, *Anything between non-sentient and geniuses is *worth cherishing as is*

I don’t find fault with the parents as laypeople who love a child and have specific ideas on how to handle their daughter. My perception is that those ideas are wrong in a larger context and actually unintentionally dangerous to the rights of all people with impairment.

I find fault with the medical
“experts” who ought to have attempted at the very least to convince the parents of the lesser evils of a hysterectomy, encouraged Hoyer lift use and a support system for the parents.

And another thing or two I had to add:

First, and I had forgotten, there are *chemical* ways to stop menstruation: in other words a hysterectomy was the *most invasive choice.* And, as for avoiding pregancy, birth control shots exist that could certainly have handled that, or a tubal ligation, a much less invasive physical option… (If the family history *specifically* ties to uterine cancer, not just cancer risk as a whole, then that would make the choice more understandable, in my opinion. If it’s ovarian, remove the ovaries…etc.)

And secondly The prognosis for Ashley, if even *correct* is, as with any diagnoses *as of the present state of medical science.* Just imagine if in ten years or fifteen, some procedure yet unseen or unknown could increase her cognition or other ability? If, by *positive* medical intervention sometime into her adulthood she became able to judge these events for *herself?*

I wouldn’t want to be her parents on that day.

********************************* Update Sat Evening MST********************

Via this
thoughtful, detailed analysis by Mary Johnson at WIMNS blog, she asks a question that so many have asked why those with impairments are largely left out as being any sort of expert on disabled lives in media stories such as Ashley’s, and the UK’ press response.

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