(I know I haven’t been here in awhile. Crisis management has my full attention, and will for the next three months or so…)
It’s supposed to be okay.
It’s important that I’m quite clear on this:
I am really grateful to have a PCA working for me. Showers, shoes, cleaning, laundry…I’m amazed that this has finally come through. And, for my first time being a de facto “boss” we’re doing quite well. She knows what she’s doing and she’s friendly. We get along as people too, it’s not merely a cordial, professional relationship.
I’m also living in the cleanest house in the world now, except for the permanently destroyed dog-carpet. I haven’t lived in this clean a house since…since (Oh, alright, I’ll say it) since I lived with my parents. She also cooks, and I am pleased to be able to eat some veggies that I like (finally). My roommate’s tastes ran the kitchen, and we have very few things we can both agree to get cooked.
And, it’s supposed to be more than ok when a person with disabilities *finally* gets these supports after a long wait. (The well known activist Nick Dupree comes to mind. Google the name.) It’s something to cheer over.
Maybe part of this next paragraph is because I’m an only child and never loved sharing or that euphemistic sappy thing they say today “…plays well with others.” I find a tiny part of me says (Inside my head): “No it’s not completely ok.” I have this contractor in my house. In my personal space. They have a list. They’re doing it. Since they food shop and prescription pickup, I have to give them minor access to my resources. (She’s been completely trustworthy.) They have to handle getting me in and out of the shower. I make a great effort to maintain some modesty…because I need that dignity for as long as I stay at this level of function. They have always said they’re ok if I’m not fussy about that and just get in the shower…but I have to maintain some dignity. There are a sh!tload of other things stressing me out, and the modesty matters.
I’m really looking forward to accessible housing, because the need for much of this will dissapear.
Until then, I’m lucky to have the help, and I know it.
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As the Deficit Commission decides where and how to cut…Social Security is clearly on the table.
It’s head Alan Simpson clearly seems to think that those opposed to cuts are blind to the problems with the system. He doesn’t believe that those opposed to cuts have any solutions (They do, but they involve doing things he doesn’t like, like payroll taxing more people, and that isn’t quite the point of my morning screed today)
Well, they’re going to slice and dice the economic lifeline of seniors and persons with disabilities eventually. It’s going to happen. As they’re deliberating…this is what I *demand* -yes, that’s right, -demand- of my congresspeople whether I voted ’em in or not.
At least act. Put on a damn show. Look, and sound, like you regret doing this. Couch it in terms of saving the system as a whole.
And since openly admitting you’re in favor of moving retirement money to Wall Street is, shall we say, less than wise in this economic climate…you cannot do what you really want to do, which is praise corporate gambling with the money of the marginalized…well then, you have to have a profound regret-face and say, “Gee, I’m terribly broken up about this, but the $$$ has to come from somewhere….”
You don’t even really have to be broken up about it at all. See, that’s what I learned when I was able to hold down a job. If you’re in customer service, *part of the job description,* is working hard for every customer, giving sincerity to those who you understand and giving a constant cheerful earnest performance with customers who are less than polite… laying on the serious acting in order to solve the problem and diffuse a potentially adversarial relationship… You can’t just solve it. You have not done your job unless the customer truly believes, whether from your sincerity or well crafted artifice that you genuinely want to help them, or at the very least empathize with them when delivering bad news, or the fact that their options are limited.
As to the matter at hand, privately in your own head, you can think descriptions like this = Social Security without getting much blowback, because we aren’t mindreaders in this country yet…
It’s like a milk cow with 310 million tits!
What you shouldn’t really do though is commit these thoughts to an email you send to someone who disagrees with you…It might get out.
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Of the Obama Administration.
Here are two more conduits to encourage a successful dialogue between the new administration and people with disabilities:
First, if you want to be considered to advocate in, and work for the new administration, the American Associaton for People with Disabilities is building a talent bank with resumes of interested individuals.
send your resumes to resumes at aapd dot com via email. It’s open til March 2009.
And second, send good ideas to the incoming administration directly at their new site here.
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A candidiate for president, during a regular sort of stump speech last night…(The Obama-Clinton rally) showed more political acumen than normal.
When Obama was closing his speech he mentioned a list of groups of people that have, past or present been at odds, and began the list by saying that polarized partisanship, or divisions based on difference didn’t have to last. “It doesn’t have to be:”
Democrat vs Republicans
Liberals vs Conservatives
Young vs Old
Black vs White
Straight vs Gay
and then…
“Disabled vs Non Disabled”
I give him language amnesty. Maybe he’ll be saying “people with disabilities” or writing “PWD’s” by the middle of his first term.
This wasn’t a rally at an Independent Living Center, or a photo-op at a rehab hospital, or a speech by a normally couldn’t-give-a-sh!t politician cornered by an Adapt protest in or near a government building.
This was a candidate speaking at one campaign rally….and he included us, as part of the whole…
It seemed easy, not forced. (I’m hoping he didn’t just see a gimp in the sixth row and have a quick flash of “Oh, I ought to mention this…”)
I was startled, shocked. I’m so used to people with disabilities being taken for granted by the left, and used to jam the Duty to Give Birth idea onto the country by the right….
Maybe, this isn’t an aberration. Maybe he (or someone on his staff) ‘gets’ it.
We’ll see…
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So, I lied… another primary post.
Six months ago, did anybody think that one man with a positive vision and a gift for powerful speechmaking could not only chart a course for altering our muddled, messed up trajectory…but make some of us actually believe for a moment as it happened, he could *also* fight to scrap the negative, divisive hateful soup our politics have become?….(Unfortunately *in* that fight he got dirty too, and made mistakes…but, who’s perfect?)
Even if it only lasts for that single day, yesterday, I’m no longer jealous of the hopeful crowds that put Jack Kennedy in office. I hated seeing a transformative candidate and president *only* on film..only on paper.)
Because I got a flash of that last night…seeing something bigger than a single primary going on….
If he’s allowed to be his best self…..
And in that spirit, I’m reminding Mr. Obama that he wrote this plan for people with disabilities…
Dear Mr. Obama…..
If we lift you up and carry you on our shoulders,
If you lift us up and make us give a damn,
Remember what you wrote about the US signing the International
Bill of Rights for People With Disabilities
Remember what you wrote about access to employment and education for people with disabilites
Remember that you promised to support our efforts to be a more visible part of each community in America…
Remember us….remember the plan….along with all the others your candidacy and Presidency could help….
and most important of all…remember us the first time you have to *compromise* your stand as President….to make some sort of deal….
I have not yet decided how I’ll cast my vote on Super Tuesday… (Yeah, I get to caucus, something I’ve not done before…kinda exciting)
I’m just saying that if this momentum gets Mr. Obama a victory…. I hope that more than sometimes….he lives up to the promise of his rhetoric….
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Midlife And Treachery 
