I grew up in Massachusetts, a proud liberal. I believe strongly that society should be as inclusive as possible. We have a long way to go in combatting racism, sexism and other forms of discrimination. I think the difference between equality and fairness is sometimes not obvious, and this can cause some confusion. I try to be as sensitive as possible to all groups of people.
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.