The “OMG Really” of the week for me…
Just to set the record straight, family, friends, enemies, random strangers reading this blog,
I’d rather work if I could.
Really,
Honestly
Absolutely.
Some of you have mentioned privately that I should get my impairments under control, as if I had that capability for all six at any given time.
I Don’t.
I’ve been homebound for nearly a year now, and it is driving me goofy.
I’m one of those obnoxious liberals, and yet…
I’d Rather. Work. And. Pay. Taxes.
I cannot do so anymore.
I’ll have some hope for amelioration down the line, but it *isn’t* a matter of conscious choice.
I know they were trying to be helpful and constructive…
But I’m sorry it drives me nuts.
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.
