Some days, I’m just a troglodyte…

May 9, 2012 at 5:27 PM (Uncategorized) (, , , )

A caveperson refusing to embrace the grownup idea of what’s a good thing, and instead pout because it came along too late for me.

My grown side is really excited about what cord blood might mean for children with cerebral palsy….the potential for building or rebuilding some of the less than optimal parts of the way we talk to our muscles.

But then I just get irritated.  I’m such a mental two year old sometimes.

“Could’ve helped me.  Why didn’t you bright lights of medical marvels come up with this years back?”  It has resonances of when the first HIV cocktail medicines became available two years too late for my spouse.

It’s why the old “cure” paradigm is so useless for a fulfilling life.  You don’t sit by the phone and pine for this stuff, especially when you’re way past twenty one.

If it shows up it shows up, use it then and be pleased about it.  And if it doesn’t, or it shows up late…you deal with what you’ve got.

Whaaaah.  Bitch complain.   But then I just shrug and say to myself…”Well, I’m doing rehab….I’m seeing some small improvements.  I’m doing what I can do.

I think, in this case it’s part of the broader irritation with having turned fifty this past year…

more and more things just aren’t going to happen.

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Medical Model, Social Model and betwixt and between

March 3, 2007 at 10:26 AM (Uncategorized) (, )

I apologize in advance to those that read this space who are firmly and completely in the “Social Model of Disability” camp.

I just can’t wrestle this all the way to the ground and feel comfortable with it…

First, the good side:

I believe society and attitudes should *not* constitute a level of isolation and barrier so great that it is greater than the impairment itself.

I do.

I also believe there are many many people who, in order to force society to treat them as people first, with the respect and dignity everyone, able or not deserves, say “My impairment is an integral part of me, and I would not be “me” without it, so I and my impairment are fine just the way we are…”and that is truly the case for them…

But, I’m sorry. This is where in my real day to day existence, the wheels fall off that wagon for me. Much of the time, this sounds like my therapist talking to me back in the late eighties, when I came to realize, that conventional therapy tries for a positive outcome by changing the client’s “perception” of the physical/emotional difficulties I was going through…

“Things are never universally ‘bad’ or ‘good’ it’s all in the way you percieve them.”

I’m sorry.


And, in the haste to avoid the ‘victim’ label, or to make sure to disabuse the world of the notion that doctors are all knowing and that no one should assume they or any other caregivers have our best interests at heart, *any* medical intervention that might be a positive seems to be scorned. (I’m not talking Ashley. I’m talking medicines, common surgeries, and cool tech.).

So I’m stuck. The social model of disability is what I *want* to be true for me, as for others.

Because that means that physical and social barriers have a hope of coming down.

I’m not a victim.

But…without medical intervention I would not be able to work or socialize or be further down on the depression/anxiety rollercoaster than I am right now. I’m not about to say, “Me and my impairments we’re fine with each other so fork over the necessary dignity and respect.” Instead, I’ll say: “Give me some dignity and respect, dammit and right now, so that I can better bear the phyisical and emotional costs of my impairments.”

Because I won’t mealymouth around and say that none of my impairments hurt me, hinder me, piss me off, and force me into several difficult workarounds or prioritizations. They do cost me. Every goddammed day.

So someone well versed in the social model….explain to me how I get to a point that to be a true example of the social model *all* of my various impairments are really not the problem, that society is…

I can chime in with a yes for cerebral palsy and the carpal tunnel. They are not in the ‘hindrance’ category for me these days.

And, asthma is just an annoying pain in the ***.

But the other two. I’m not fine with, and cannot dismiss them and say “You see? It’s solely the ramp I need and the decent socialization that society learns about when they decide to treat us as people….those are my only real problems…”

I’m just unable to do that. So the whole theory seems to turn sour in my head.

I’m not opposed to that view. I just don’t see how I can ever get there….

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Veto, Science and the word "Cure"

July 20, 2006 at 2:09 PM (medical ethics) (, , , )

Those with disabilities often loathe Telethons and empty promises of “cures” whether by big pharma, NIH,faith healers, herbalists, etc etc.

Why? Because we’re busy with relationships, jobs, volunteer opportunities just as the able are. Many in the disability community don’t spend a bunch of time waiting for a cure We’re doing instead….Pining by the phone waiting for a cure, or focusing solely on cure rather than quality of life does a disservice to the doctors, the scientists, potential patients and caregivers. Also, many of us figure we’re just fine the way we are thanks. (The most recent X-Men movie is a good illustration of the “different is fine” idea.)

That doesn’t mean that if solid science says that there are some promising leads in Stem Cell Research, that solid science shouldn’t be allowed to run its course and perhaps find things that will dramatically change many Americans lives for the better. In other words, we’re not going to sit at the side of the road and beg for alms, but if medical advances can and do eventually help many of us, that’s a great thing.

The President has said no. That was a mind blowingly dismissive move towards science and towards advancement. His base loves it, but it’s just plain nuts. Far be it from our President to use some common sense. About anything.

But, the people that write and report on the Stem Cell Debate who are for the research have also made a mistake. And I dunno about others with impairments, but this disabled person would please ask those who support Stem Cell research to stop intensifying and reinforcing the “poor tragic people” stereotype. The mother heartbroken because her child won’t be “cured” will still love them as they are. The awfulness of being in a wheelchair and what a “tragedy” that is. (Ask the guys in the movie “Murderball” if they are feeling “tragic” today. ) Before the potential benefits for Stem Cells were discovered we were going about business as usual and we will continue to do so.

Please oppose Mr. Bush on the clear merits of the science involved and the specific conditions we hope it might help. Don’t use stereotypical images of the disabled to make your point, images that make it harder for us to be judged on “who we are” not our impairments. The “tragic” frame tells us we’re victims first. We’re not.

Crossposted to Kos

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Telethon-types, activists

October 7, 2005 at 7:07 PM (Uncategorized) (, )

can I vote for a third category?

There are those who push for cures (category I)

And then there are those who reject the “cure” idea fiercely, insisting on being taken “as is.” (Category II)

Mostly, I fall in category II. But, I have to admit since I have several intersecting conditions some of which require medication and periodic disccusions with physicians…If I stayed with myself purely “as is…” well…the blog would have all the fascination of a perpetual train wreck, IOW the readers and I would tire of it quickly.

I want a third category. Efficacy. Call it Efficacy. Where either alternative medicine and/or some combination of alternative/traditional medicine make one’s permanent or chronic discomforts ratchet down to acceptable levels *much of the time.* If you could plot a graph, the level and type of medical intervention begins at zero and then slowly rises while the line of the person’s discomfort and difficulty with their physical state begins quite high on the graph, but gradually comes down to that acceptable point where it crosses the medical intervention line,

Voila. Efficacy. Not a cure, and not a search for one…just a period of time when ones difficulties are quite manageable.

It would also help if those who pursue efficacy not be stigmatized as chasing a cure.

And the amount, type and duration of medical intervention to achieve efficacy has to be directed by the person with the disabilit(ies).

Just sayin’

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