I am who I am, not who you wish I was.
Not much to this post except to say that it grates:
That a relation keeps a picture of me when I was eighteen and thin and still on my feet…
and not many others.
I didn’t pick the librarian path I had trained for. (it had to do with the only jobs available at the time being in rural communities, prison libraries etc, places an impaired person couldn’t work, as well as the impending marriage)
I didn’t get to the historian path; life intervened.
I did manage to stay employed and (mostly) self sufficient from 1986 (first as a grad assistant) through to 2004 ( more impairments had shown up) with cubicle call center jobs….
I’ve been in this apartment now for close to nine months without any significant break…
I am who I am. My limits are what they are. And I still contribute.
My contribution to the human community is that.
1. I’m still funny.
2. I write.
3. I have this thing about facts. I’d like people to stick to them, whether it is disability issues or some of the larger scope items I’m interested in, or even arcane TV trivia.
Facts. F A C T S.
And, I wish people would get over being scared of me, simply because my level of impairment has changed. Or that God forbid, I’m fat.
I am who I am.
I don’t wish to judge, but I am disturbed.
So, at a town hall earlier in the month, a parent of a son with cerebral palsy [I also have CP, full disclosure] went up to the front of the room to speak with his Congressperson about the present healthcare reform bill. Then, it gets spun….
The left blogosphere says that the parent went up there because he believed his son would be excluded from any reforms in healthcare that are presently being proposed in the House or by the White House (The Senate, as we know, is still working).
They also say this parent was offered a face to face meeting with his congressperson to discuss this issue, and that the parent declined such an offer.
On the rightward side of the blogosphere they say the parent was asking how reform might help his son…and that later that same day ”liberal thugs” to use their phrase, visited his house and harassed him about his action at the town hall.
I’m not going to link, but if one googles “Mike Sola” or Youtube’s the name, you’ll get the exchange between the two…
Here’s my problem, and this is solely my opinion:
I believe he loves his kid.
I don’t believe he did what is best for his kid by refusing the meetup with the congressperson…because present or future, if his son has a bureacratic snafu with SSI/SSD, Medicare, Medicaid, long term care, Vocational Rehabilitation anything…having the congressperson as a past contact, so he could call their staff and say, “Hi, I don’t know if you remember me, but…” and work on getting that problem solved with a powerful ally at the family’s disposal….
And, if Mr. Sola rolled his son up to the front of that town hall *knowing in advance* he’d never agree to a one on one meeting with his Congressperson….If that’s the case, in my opinion, it feels very much as if he just used his son for political theater.
My parents may have been messed up in the head about how they viewed my impairment from time to time, but if an opportunity presented itself to attend a town hall, they would have been polite, interested, and detailed in their questions and never refused one on one face time with a civil servant of the opposing party, even though they voted straight Republican,
Mr. Sola, as I’ve said, I think you love your son. If a public servant with different views than yourself still recognizes that you are a constituent with some very specific concerns, and offers to sit down with you for some civil discourse and possible help for your son….Break bread with your Congresscritter. It’s what America is about! Take the time and talk to the man.
Because with the most important piece of healthcare reform for us, the Community Choice Act already off the table, the last thing persons with disabilities need is anyone rolling them up front and showing them off for someone able-bodied’s public/political agenda, even if that someone is their own father….
Well *that* went well
only not. Homebound means homebound…Disability nerds from SSA, are you listening….?
Venturing out tomorow…
There will be a detailed lot to blog about tomorrow evening when I get back from my third attempt in six months to leave home and not get ill. (the first attempt, to use the scooter to attend church was humiliating and unsuccessful. The second, to see “Star Trek” worked well.)
I’m taking precautionary meds and fasting for approximately 18 hours. Hopefully that means I won’t get ill. In front of at least six people, most of whom don’t know me.
I’m ashamed to admit I’m terrified. (They won’t see it. I’ve still got enough emotional fortitude that I don’t permit strangers to guess I’m distressed.)
And there’s also old baggage to work around. That doesn’t scare me.
The 1/2 Compromise and Health Care (Updated)
I hope you all will pardon me for the tone and lack of proofing in this diary.
Somebody at the NYT let this man write. That’s on their heads. But when Peter Singer starts babbling about the value of the lives of persons with disabilities, as it pertains to the health care debate…I have to speak. I am compelled to speak. Because this Princeton chair is, to put it mildly, full of crap
I’ll preface this by two things. He is an advocate of rationing care, and that particular piece of it I’m not disputing. I also know that if care is cost/benefit rationed there are unfortunate formulae that must be used. Life insurers and attorneys do it all the time. It is the insidious nature of the examples he’s using — but as many in the disability community already know, this is the guy that opined that killing severely disabled infants after birth might be something society should look into, to save itself the burden.
I’m at the computer. I’m shaking with rage and it has to come out. Don’t bring us the formulae of economists and sociologists Mr. Singer, in the guise of stating in a mainstream newspaper that we should accept the idea that a person with a disability’s life is worth less than the famous 3/5ths compromise of the 18th century.
One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.)
Put this in the New York Times? Get the idea out there that we’re worth less? My problem with this is that the idea is now out there. Pandora’s box has come open, and some able now get to nod in agreement over their orange juice.
But the few, the invisible, the ones with (gasp!) quality of life, understandably hold a different view.
Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
Yes, we might. We just might.
This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it.
He’s not talking about the Pro-lifers…it’s a different sort of right.
But, Mr. Singer (she said as the student at the feet of the Idiot Who Poses as a Wise Academic)
Have you, in your well known, vaunted, academic career ever come across such a thing as nuance?
Here, Let me demonstrate.
The disability community does not sit around and wait for cures in our day to day living because there is life to be lived, words to be said things to get done. We are not the perpetually abandoned prom date. We don’t need a cure to be valuable human beings. However if we and our allies choose to be a part of some of the many advocacy organizations and docs and scientists out there come up with a treatment or cure that would ameliorate some or all of the impairment…some of us may try it and benefit from it, and that is a good as well. We live lives as paras, quads, other kinds of gimps, etc, live life as it is given to us, and by that, demonstrate its value. And, I despise Mr. Singer, your particular brand of free speech, to even begin to let seep into the watertable of our minds that my life is only worth half of yours. The healthcare debate is one we have to have. But not in this sick little corner. Not with this man. Not me. I know my value, and you haven’t got a ****ing clue what it is Mr. Singer.
Update: Now, this would actually be fascinating if his philosophy didn’t remain so repugnant.
