(Just
a disclaimer: this is a bit rambling.)
Sometimes
when people ask me what accommodations I need, I find it difficult to answer.
Depending on the situation, my only accommodation may need to be an
understanding that I’m going to be tired sometimes and that I might have to
miss activities/classes on occasion. That’s basically asking for flexibility,
and while you can do that officially (it’s in my accommodations plan at
school), people can have issues with the lack of specificity, both in agreeing
to grant the accommodations and in actually following them (“But I am being
flexible,” says the professor who gives you two extra days on a paper when
you’ve been out of class for a week and still have the book to read.)
Some
of my accommodations, however, are more concrete: a single room at school so I
can rest, for example, and not having to stand for long periods of time. That
last one presented me with a problem recently.
On
the busses in Parma, I’ve been fine, because there are usually seat available,
and when there aren’t I am standing for maybe seven minutes, maximum, which I
can handle (I should note before I go on that walking is usually better for me
than standing, because walking at least gets my blood flowing while standing
allows it to pool and exacerbates my symptoms).
A
few weeks ago, though, when I went to Carnivale, we got on the connecting train
from Bologna to Venice and discovered that there were no seats available. The
entire train, in fact, from the carriages themselves to the outer spaces near
the bathrooms, was packed. The train ride was two hours. While I am sometimes able
to stand for that long, it’s very unpleasant, and I knew that I had a lot of
walking ahead of me in Venice. I considered trying to ask someone to give up
their seat, but I figured the odds of someone giving up their seat to a visibly
able-bodied American speaking poor Italian and claiming to have a disability on
a two hour train ride were slim. I face enough skepticism in my native country,
speaking my native language. I really didn’t want to have to deal with doubting
faces and a language barrier. It also
occurred to me that I didn’t even know if there’s a culture of giving up seats
in Italy, and furthermore, while I probably could have strung some sentences
together, I wasn’t 100% how to explain the situation in Italian. I suppose
basic language skills in a foreign country go beyond ordering in a restaurant
when you’re disabled – you also have to know how to explain your disability.
Ultimately,
I ended up sitting on the floor of an outer train compartment, squished in a
corner, having to readjust anytime someone passed through the area. The other
students on the program were really great about it, checking in with me
regularly, but I was still fairly uncomfortable. After about 45 minutes, though,
the little girl who was perched on a pull-down seat left the train with her
mother, leaving it free for me to claim. But that was just luck – I had fully expected
to sit on the floor for the entire ride.
I
asked an Italian friend afterwards if she thought someone would have given up their
seat, and she said she didn’t think so. They might not have believed me, she
said, and even if they did believe me, they probably wouldn’t have wanted to
stand for two hours, regardless of whether I needed the seat more than they
did. They would have looked at me and seen a healthy-looking young person, and
their gut would have told them that I was fine without a seat.
There
are certainly privileges invisibly disabled people have over visibly disabled
people (and of course there is not always a clear divide between the two) – we
often get to choose who knows we’re disabled, and have more control over how they
find out. We don’t get stares. But there are downsides, chief among them being
the recipients of a tremendous amount of skepticism and constantly having to
assert our identities as disabled people. I’ve had so many people tell me they
forget I have a chronic illness and expect me to take that as a compliment.
Just the other day, I was on a bus with a girl from my program when two women
came on. The elderly one sat down, and the middle-aged one stood by her. The
girl on my program mouthed for me to get up, but I didn’t, because I was tired
and the middle-aged woman did not indicate that she wanted the seat (if I’m
feeling ok to stand, I give up my seat to those who ask because I figure if
they ask they probably need it more than I do in that moment). I told the girl
that I wasn’t going to get up, that I sit when I can because of my illness and
she laughed and said that she had forgotten about my illness because I didn’t
allow it to consume my life. I didn’t have the spoons to explain to her why the
situation upset me, but it did.
I’ve
talked before about the whole “don’t become your disability” and “I’m glad
you’re not letting it take over your life” thing, but I just want to mention
again how much it bothers me. For three years in high school, I woke up in the
morning, went to the basement, watched tv all day, maybe went to a doctor’s
appointment, maybe had an hour of class with a tutor who came to my house if I
was feeling up to it, and went to bed. Was I becoming my disability because my
health was so poor that I didn’t leave the house for weeks at a time? Am I
becoming my disability now because I spend so much of my time thinking and
talking and writing about disability? In case it’s not clear, the answer to
both of those questions is no, but as I’ve said before, they’re the wrong
questions. Why are we so worried about people “becoming” their disabilities)?
Is it because we’re scared of disability? Is it because we want disabled people
to try to pass, to try to be “normal,” to make life easier for those who are able-bodied?
If I claim my disability identity and
call you out on your ableism, does that make you uncomfortable?
