Fend for yourself

December 1, 2010 at 2:07 AM (Uncategorized) (Disability, Employment, Poverty, Unemployment)

Six hundred dollars…after paying 535.00 for health insurance and about 300 towards the rent, that’s all the roommate and former PCA has left…she’s asked three docs to fax info to a long-term disability company…it was a third party policy offered by  her former employer…the disability company has denied the claim…she’s lawyering up (towards the third party disability company, )and will be chatting with one relative this week…

In early September she had a job…and now…she has nothing.  The suddenness of this…is really jolt to the gut terrifying…we’re experiencing, for different reasons,(the worsening of our disabilities…) what people affected directly by the economic downturn went through, are going through…

I feel like she, and to a lesser extent myself…are being punished.  Really. Punished for trying to do what the rest of you do.  Fend for ourselves.

See, it started out as a project of mine.  I have this bad habit.  I’m cheerfully pushy with other disabled people when I meet them if I think they can do better than they’re doing…Her, and one other friend, were people I thought I could help navigate through the world of working. (this other friend isn’t speaking to me now…doesn’t say much for my track record, does it…)

My friend and former PCA figured out how to work at places with phones and benefits, in part because I showed her how to do it, ’cause I was doing it at that time.

And I worked out of college because I have an old old conversation with a family member relentlessly running through my head…back from my teenage years:

I was thanking the familymember for helping me out with something, I don’t remember what…and they said, “Oh don’t ascribe any noble motives to this. I want you out of the house and functioning by the time you’re 18.” There was nothing evil meant here.  Adults worry even about able young people, and with good cause, that if their relations don’t get self sufficient…they’ll still be there when they’re unemployed, married, and 36 years old.

The way my brain ‘translated,’ that over the years was, “You’ve got handle it yourself. You have to stay ‘out of the house and functioning.’ That’s what ‘they’ want no matter how hard it gets…this one conversation somehow became a line between success and failure as an individual.  And, for a good while I got a great deal of benefit from trying to hoe the exact same row as the able bodied.  But I was never able bodied, and looking back, should never have tried to spend decades acting as if I was until 2004…especially because I am the most lousy about money person you will ever know.  Intelligent, funny, charismatic…and hideously unable to keep money or food from seriously screwing with my life. I am stupid about money.   My roommate is also less than brilliant about money.

And that ‘act like the able,’ way of doing was what I tried to impart to the roommate.

And I’m wondering now if I did my roommate a terrible  disservice.  Because…

She worked for three months and two months, and a year or so and nine months and eighteen months, and then got the job she would have for ten years.

I may have helped her figure out how to handle working, after a long troubled time in her life…but she was the one who cheerfully and methodically learned the job, and became good, better and then the bloody best at it.  She became an informal source for answers for years for bosses, trainers, directors, accountants and even the occasional VP.  She became a part-time trainer herself…won awards, was made much of….

But during much of that time, preexisting and new impairments dogged her…they worsened and worsened slowly and new stuff showed up and interacted badly with the existing stuff, and then *life threatening stuff* showed up…FMLA was a job saver for her…after years of being fine with any reasonable accommodation….they wouldn’t move her desk close to the fax because “that’s where the temps sit.”  Suddenly this May she was  as “not a team player,”   WTF? W.T.FFFFFFF” By September, standing up from her desk and walking on crutches to the fax made her grit her teeth and cry….

She can barely stand unassisted.  She cannot walk unassisted. At night she cries due to  pain, that even restricted medications take two hours to shut down enough so she can sleep. I hear it from the other room and just get sad.  And because they take that long, she’s really too medicated to think clearly about what she has to do next until about 2:00 in the afternoon. No driving  on this stuff.  Hell no.

And by 1/1/2011, she may have no place to live.

And, at that same moment I may have to move back east (not a bad thing at all.), and temporarily move in with my parents (a living arrangement that, putting it carefully, will be fraught with difficulty and complications.) I am on a waiting list for five accessible buildings, and the wait is *not* the three to five years that is the norm, but about eighteen months at the most, from what I understand.

I was trying to hold out here till March, till the end of the lease…and there is some great help coming from my family for me…but the uncertainty of this makes me feel like I’m sitting here with my head in a vise, and I cannot even really imagine what *she* is feeling.

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