Why Medicaid Cuts Make Me Think Of Luigi Mangione
Not because Mr. Mangione was on
disability like me. By all accounts, he comes from a wealthy background that
could’ve afforded him all of the alternative medicine he could take into his
head(or aching back) to want. But reading that story over the summer still
reminded me of how small our world got when I was working on our last appeal of
an attempt to cut my personal care benefits in 2012. That is most of what I did
that year, most of what I thought about, even when people asked me about other
things. Mentally, part of me was looking
for some mundane personal detail—why don’t personal-care plans take more note
of menstrual periods, for instance—they happen to half the planet…just not,
shall we say, to the lucky half—to stuff in some manila or electronic folder,
and hope that it pressed some heartstring someplace. In the end, I guess that
time had sort of a happy ending. Friends wrote personal statements for me, the
doctor that I’d only seen one other time came through with a strong and
stirring statement, I had support from the local independent-living center, and
we even got most of the money back. I don’t know where I’d be without support
that everyone may not have. It still
was a small dark time, ten months spent e-mailing strangers and looking for
technicalities…if my mobility issues had been compounded by the kinds of pain
that it seems like Mangione suffered, I’m not sure that I could have helped
myself from taking it personally and maybe taking it out on someone else.
People also can’t get time back, not that being a disabled adult means I’ve
never lost an instant. I’ve been in a
wheelchair since birth so the appeal process put some strain on my double act
with my mother, too, and, even though it seems dramatic to say so, we think of
that as a lost year. I don’t want
another one; I think that’s a mean thing to do when people are just trying to
get through our lives, largely in situations not designed to meet our needs,
since the United States is still designed for abled people: a lack of access
for people with mobility aids and workplaces that demand *more* than full-time,
if anything all fit together to remind me that very little was designed with me
in mind.
It's hard not to do what I’ve been taught to do at times like this and bring up
the ways I’m good at being Special: List some publications(yes, there are some)
or show off a picture of me with the fam looking cute. I’m pretty good at being
mainstream-acceptable, which is why I can still recite my state-college
GPA(3.2) from journalism school after decades, even after it wasn’t my ticket
to ride.
My fitting in is not the point. You shouldn’t have to deserve healthcare, housing, or to go to the toilet. You really shouldn’t have to wonder if your own government treats you like they do because they think you can’t fight back.
Erika Jahneke is a writer and activist with Progressive Democrats of America. She was diagnosed with cerebral palsy after an accident at birth and needs extensive attendant services. She’s based in Phoenix.
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