I got a personal e-mail saying "I work for a living and my taxes support fuckups and malingerers like you."
It’s a wonderfully nasty accusation, but let’s make it clear: since my Unemployment Insurance benefits ran out in September 2000 (benefits to which I was legally entitled because I was actively looking for new employment within my capabilities), I have not received one cent of government money. Not Disability, not Medicaid, not food stamps. Nothing.
I have, however, paid taxes since 2000, because I do, in fact, work for a living just like the accuser. Even when I don’t earn enough to pay income taxes, I do still pay property taxes, sales tax, and Social Security tax on every cent of my earned income.
There is absolutely no evidence that I have been supported by anyone’s taxes in the past 7 years. There is ample evidence that I have been working and paying taxes for the past 7 years.
So, before you give in to the urge to call me a social parasite, get your facts straight. I may not pay as much in taxes as you do, but I do earn money and pay taxes and get nothing in return.
Although there are government-paid housekeepers, I don’t get one of those, either. After the incident with being thrown out of my house because hired cleaners didn’t clean, Social Services did come over to evaluate me, and agreed that I do need household help, but that I do not qualify for any government household assistance program because I am neither receiving Disability nor over age 65. The way things are going with my SSDI claim, I’ll be eligible for a housekeeper by virtue of being over 65 before I am officially declared disabled.
That’s right – your 65-year-old neighbor who is still healthy enough to run marathons is eligible for a free government housekeeper, but this physically disabled woman is not. If I want one, I have to pay for it myself, which costs about as much as I earn in a week, leaving nothing for groceries or utility bills.
So, to quote my abusive correspondent, "put that in your pipe and smoke it".
If you take issue with disabled people being entitled to Disability benefits, then, as I have suggested previously, work with your employer to hire those who are collecting Disability. Persuade your employer that someone who can work 1 hour a day is a good hire, or that someone who calls in sick twice a week is the employee of their dreams.
The problem is not that the disabled don’t want to work, but that employers don’t want to hire them. My SSDI judge keeps referring to the fact that "with your qualifications, you should have no trouble finding a job", and, in fact, my qualifications were getting me plenty of interviews. The problem was when the employer saw some indication of my disability – the wrist braces, the exhaustion just from getting to the interview, the sudden need to flee to the ladies room to avoid having diarrhea all over their rug – and ended the interview because they had sincere questions about whether I could do the job. It’s clear from my own experience that applying for jobs is not enough, interviewing for jobs is not enough, you have to be able to convince the employer that you can do the job, and if you tell the truth "I’m limited in how long I can type" or "at times I will need to lie down for an hour or two during the work day" or "some days I will spend half the day in the ladies room", you can have impeccable references and qualifications and they’re going to pass you over in favor of a lesser applicant who is healthier. Or you can lie about it and be fired when they discover that you need to lie down so you won’t faint, spend an inordinate amount of time having diarrhea, and after typing a for a while your muscles become fatigued and will no longer cooperate with the signals they receive from your brain.
The Ninth Circuit has ruled that "work when able" is not an ADA-required accommodation. Someone with CFS who needs an excessive number of sick days cannot demand an employer provide that to them. Yes, if you have a relative or close friend who owns a business, you may be able to get that accommodation because they love you, but you will not get it out in the real world. The law says employers are not required to give it to you, and nowadays, most employers are driven by the bottom line and not compassion.
Unfortunately, more than half of CFS patients who are too sick to work are denied Disability benefits because of the misperception that CFS is fakery and that there is no way to prove they are ill. In fact, there are many blood tests, neurological tests, brain scans that will come back abnormal, but those tests are not routinely performed. (In my case, the judge sees that my diagnosis is CFS and refuses to acknowledge any of the abnormal test results because he doesn’t think CFS is real, therefore, the abnormal test results cannot be real, either. He’s ruling not on my actual ability to work but on his prejudice about my diagnosis. In fact, long-time CFS researcher Dr. Nancy Klimas observed at a CDC press conference last year "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis." If people with those diseases are granted Disability benefits, then by law an equally-impaired CFS patient should be getting benefits, too. Unfortunately, that’s rarely the case, because the same symptoms that are acceptable and believable in MS are considered "not credible" when reported by a CFS patient. The determination which should be made solely based on a Functional Capacity Evaluation is often made on prejudice for or against the name of the disabling condition; my uncle with cancer was told he could have benefits just because he had cancer and no evaluation was required ... and he was, at the time, far more able than I have been at any point in the past 7½ years.)
And here’s the really frightening part: it’s caused by a virus for which there is no vaccine, no treatment, no cure. You could be the next victim, and you could wind up living in the streets because the lucky few who do finally get their Disability benefits have to fight for them for years. The leading California case on the subject, the victim had to wait 10 years and get the Court of Appeal to order her benefits, because the SSDI judge continually refused to accept the medical evidence presented. (Just like has happened to me for the past 7 years.)
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