Mark Pellegrino, MD, who is both a doctor and a fibromyalgia patient, shares the following observations:
"It is my experience that the majority of Fibromyalgia workers are motivated and determined to maintain their jobs, but issues of disability may need to be pursued. I think that total disability should be rare in Fibromyalgia, and despite all the problems, there should be something that the individual should be able to do. However, the economy is not always receptive to a worker with various restrictions due to a medical condition, and all factors have to be considered"
This is a situation that many disabled people face. They very much WANT to work, but no one wants to hire them.
VocRehab experts who have looked at my restrictions and limitations have said that "there are no jobs" that I could do successfully. Even a part-time desk job would require reaching and lifting. Yet, the judge stubbornly persists in his belief that there must be some charitable employer willing to employ the disabled with whatever accommodations they need. So, VocRehab says I can't work, but the judge contradicts their expertise with his notion that in an ideal world someone would hire me anyway, and over the objections of the experts deems me "not disabled" without doing anything to help me find that mythical employer he believes wouldn't care about attendance or productivity.
Since this is not an ideal world, employers don't offer charity (except to extremely valuable long-time employees), I started my own business working at home. The business is essentially paperless, so there are no files to lift. The only reaching I do is to set my computer aside when I need to run to the bathroom (something that I could not do as often as I do -- or as easily -- working in an office where time away from desk is noted by a supervisor and the restroom is a hundred yards further away).
I'm fortunate that, unlike some fibromyalgia patients, I don't have permanent "fibro fog". I have some clear-headed hours when I can work, but on MY schedule, not someone else's. The cognitive/memory/judgment problems are the ones cited most often as reasons CFS patients cannot work. Certainly, if I were required to be downtown at 8:30 AM, they'd affect my ability to work, too. But since I can sleep till I wake naturally, instead of having an alarm clock go off at 7 AM regardless of whether I only fell asleep at 6:30 AM, it's not as big a problem for me as it was when I was averaging 2 hours sleep because I wasn't falling asleep till after 5 AM.
As an employer who is disabled myself, I am certainly open to hiring other people who are disabled, but that's the nature of MY business; I work at home and my employees would work at their homes. I've contacted other employers who are disabled, and they are not interested in hiring someone like me -- they want able-bodied employees who can do for them all the things that they can't do for themselves.
The thing that convinced me that I was wasting my time trying to get someone else to hire me was the response of an agency that finds employment for the disabled. I applied for a job in their agency, and even they said "No" and wished me "Good Luck, You'll Need It". If even agencies dedicated to finding employment for the disabled won't hire the disabled to work with the sort of accommodations I need, there's definitely a problem.
You can believe all you want in the ideal world where the disabled are given an equal shot at employment, but unless you are willing to advocate to your employer that they hire someone like me, don't tell me "just go get a job".
It's not that easy. I tried for years to "just go get ajob" and was turned down at every interview, as soon as it came out that I needed certain accommodations. I didn't give up on job-hunting until the VocRehab experts testified "there are no jobs" that I could do and explained why I couldn't do any job. Obviously, if they will testify to that in a Disability hearing where they're being paid to say that I could work if I tried, then they're not going to waste their time to try to place me if I show up on their doorstep. They know what employers will and won't tolerate, and even they can't imagine anyone hiring me.
It's actually rather laughable that people call me "too lazy to work" when I've done something that most disabled people haven't even tried: I started my own business and put myself to work at a damn good hourly rate, working the number of hours I have doctor's permission to work. But every time I've tried to work more hours than authorized, I've relapsed, which proves that it's not that I'm "too lazy to work" more hours, but that I'm too sick to work more hours. I'm able to work 6-10 hours a week because I'm spending absolutely zero time commuting. If I had to spend an hour a day on the bus getting to/from downtown, I'd be able to work 1-5 hours a week, because all the commute and preparation time has to be subtracted from that 6-10 hours. If I have to spend half an hour putting on a suit, nylons, and make up and fixing my hair to be acceptable in a conservative law office, that's time that I cannot spend working. Or I can work at home in my jammies, and put that time toward earning money.
The VocRehab experts are right: there is "no job" out there that I could do successfully because this is not an ideal world. Employers put their bottom line first, and many of the disabled cannot produce at the required 110%. Perhaps some day we'll have a society where employers have the Noblesse Oblige mindset to offer employment to the disabled because it's the right thing to do, even if the disabled aren't as productive or reliable as the able-bodied.
But for now, most employers think that providing full employment for the disabled is a great idea ... for the competition. Not for themselves. They'll complain about us being a drain on the taxpayers, but won't do a thing to helpus BECOME taxpayers. Which is what most of us used to be, and most of us would like to become again.
No comments:
Post a Comment