Alternative title: Another Open Letter to Ohio Leaders Who Never Read My First One
There
has been some attention lately, thanks to disability rights advocates,
about the abuse of disabled persons by unscrupulous businesses that are,
right now, legally able to use (abuse) them as slave-labor via wages
literally pennies on the dollar.
But another, even bigger, glaring oversight in disability law, is who
is viewed as disabled. For example, I have needed to use a wheelchair
for 5 years, due to a spinal fusion and permanently damaged sciatic
nerve on one side.
After increasing pain and deterioration of health for several years, blamed on depression and lack of exercise, I was suddenly diagnosed with chronic myeloid leukemia in February. My appeal to palliative care was denied shortly after that — apparently I’m still not sick “enough”.
I am not legally seen as “disabled” despite my clear history, because, according to federal law, I did not “work enough” before my body broke. If I want to qualify for SSDI (Social Security Disability Insurance), I must return to work.
In
fact, I never left, I have been making handicrafts, writing, tutoring
children from my home, editing documents, and creating photo artwork for
years. But I never earned “enough,” therefore it all counts by law for
nothing.
Then again, without legal protection as a disabled
person, it would be impossible for me to return to the workforce
(assuming my body could even handle it, which it truly can’t between the
chemo and immunocompromisation, a million doctor appointments for
specialists from oncology to pain management to
psychiatrists/counselors, allergy specialists, and more.
But
I can’t find or maintain a regular PCP, because of my chronic pain
issues. I am anathema to providers, with no recourse. But I digress.),
for who would hire someone with an unreliable schedule and severely
reduced physical stamina? Who would hire a worker who cannot perform
half the job? Where would I work? According to my local Department of
Job and Family Services, retail, most likely. Or maybe janitorial
services.
So I cannot work, I don’t qualify for disability aid,
definitions, or protection under the law. It’s a good thing I have a
stable marriage and family to care for me, right? Who needs to be an
independent individual in the United States of America?
Yet,
my marriage has some deep problems, as many do, and such assumptions by
the law aggravate and perpetrate abuse of a population (the disabled)
already prone to high amounts of it. My parents are older Boomers whom I
should be taking care of and not the other way-round, my children are
too young to assume responsibility for me, and my only sister is a
globe-trotting professor of ornithology.
Have I appealed and
applied to the only other federal (and by extension, state of Ohio)
disability program, SSI (Supplemental Security Income), they all ask?
Yes, and was denied on both counts because my spouse makes “too much”
money.
Yet,
his job is, and has been, in constant jeopardy because he is also my
main caretaker. He receives no compensation whatsoever for his roles of
driver, short-order cook, nurse, insurance advocate, appointment setter,
etc. In fact, he lost his last job because of America’s and Ohio’s
failure to provide adequate protections for such full-time caregivers.
But I am not “disabled” by law, therefore I cannot receive the kind of
care/help I need.
My only recourse, so I’ve been told by my
legislators’ offices, numerous Social Security Administration workers,
and even lawyers, is to contact my lawmakers. So I did. My local
representative’s email is “not working,” according to his website.
Calling his office phone resulted in being passed from assistant to assistant, all of whom were happy to pass my name and number along to whomever, but none of whom were interested in actually noting my concerns or passing me along to my lawmaker. One suggested I “write a letter.”
I have written letters to different addresses to Governor Mike DeWine, who declared Ohio to be both a “family-friendly” and “pro-disability” state via executive order earlier this year, but so far that has been the extent of things. I never received a reply. I constantly reach out to my lawmakers via social media avenues, but to no avail. They never respond.
There is no reform underway, although these have been well-known problems for years. There is no new legislation being written that anyone I’ve talked to knows of. And since I am not alone in this sinking boat, I would like very much to know why. Because we, the disabled, are all out of options.
The Midwest Courier 