One of the things I have come to understand about being
chronically ill is that we are misunderstood in a way that is permanent. It is not like being misunderstood for your
beliefs or ideals. There is no way to
make anyone who doesn’t live this life understand me. They can sympathize, but they can never
really know. I try to educate wherever
possible, but that’s not the same thing.
I accommodate the world to my needs as much as possible and do pretty
well with that.
People with mast cell disease have so many bizarre
restrictions. There’s a reason people
sometimes don’t believe us when we tell them.
If you can separate yourself from your own reality, it’s easy to see how
absurd some of our claims are. They are
true, but that makes them no less unusual.
In this way, we are very much a minority. So when people make jokes about seemingly
innocuous things, they are sometimes assuming that they are in no way
offensive.
I find that one area that causes trouble over and over again
is comedy. For people who live in fringe
communities, like rare disease or genderqueer or whatever, it is sometimes hard
to know what exactly is offensive. This
sounds counterintuitive, because I think that most people think that they’ll
know it when they see it. But sometimes
you don’t.
I think part of the outrage we feel when people make jokes
about things we can’t do is that it makes us feel misunderstood. But the fact is that most people are never
going to understand us. And so instead
of being able to definitively say, that is offensive and that’s not, we are
left with this infinite space populated by our myriad feelings of hurt. Then the day changes and maybe we feel
differently. It is a moving target.
I am not easily offended and haven’t been for years. When people make jokes about things are
harmless to most people but dangerous for me, I do not get offended. I usually comment after, “Unless you have
mast cell disease.” Sometimes it spawns
a conversation and sometimes not. I try
to consider the intention of the person telling the joke.
But if you are offended by things like this, that’s
okay. It is okay to feel however you
feel. We are all at different places in
this journey. We don’t move through
certain feelings and eventually all end in a place of acceptance. It is more like floating in the ocean; we
live in the ebbs and flows, dynamic.
There was a Supreme Court case in 1964, Jacobellis v.
Ohio. It involved whether or not the
state banning the showing of a French film with considerable nudity and sex was
a violation of the first amendment. Of
specific importance was whether the film was considered pornography. While I don’t remember the details of the
case, I do remember a famous opinion handed down by one of the Justices. “I shall not today attempt further to define
the kinds of material I understand to be embraced within that shorthand
description (of pornography)… But I know it when I see it.”
It’s not always that easy.
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