Today my friend was refused a disability fare on the bus, despite carrying her disability card and her cane. The driver laughed at her and told her she “wasn’t blind.” She has only 5 per cent vision left.
I’ve written several times before about what it is like to have an invisible illness. Assistive devices like canes go some way to indicating your situation to others, but often, apparently, that’s not enough.
It stuns me that people’s first reaction to a claim of illness or disability is so often disbelief. They want you to “prove it.” They want to know the intimate details. They want to know how it happened, and why. This has happened to me so many times over the last two years I’ve lost count. And I’ve stopped trying to “prove it,” because, for some people, all the evidence in the word will never be enough.
In this sort of situation, what was my friend supposed to do? She had a disability card. She had her cane. She had her voice, which should, actually, have alone been enough. Do we have to start carrying letters from doctors? How do we meet the expectations of how disability is supposed to look?
We don’t, and we don’t want to.
Believe me, I can be a sceptic too. In fact, I’ve become so defensive I very rarely take anyone at face value, and I’m distrustful, which is something I don’t really like about myself. But I’ve learned to be that way because of the way I have been interrogated and attacked when talking about my life as someone with a disability.
I’ve been accused of faking my arthritis for attention, sympathy, money – which is basically what my friend was accused of by the bus driver today, and I know why she is so upset, because this is the worst feeling in the world. It is utterly horrifying to have someone imply that you would distort disability and use it in this way. It’s not only calling you a liar and a manipulator, it’s saying that you’re such a vile person that you’d fake an illness that someone else legitimately has to deal with.
I’ve never faked anything, and neither has she.
Yesterday, I went to the doctor, which I have to do at least once a month. I asked for help with the nightmares caused by the medication on I’m on. I asked if I can get a flu shot, because now that I am on Humira, my immune system is suppressed, so I get the flu, I’ll be fucked. I got a couple prescriptions. The visit cost me $37. My medication cost me $45. I have $4.51 in my bank account until next Tuesday.
Today, I got a letter from Work and Income telling me my benefit will be cut off if I don’t provide them with a medical certificate proving I still have my (incurable) disability.
I get this same letter every three months.
I don’t have $37 to go back to the doctor. I’m going to ring and talk to him about it.
Everywhere I go, people comment on how I’m “doing well,” or “looking better.” On good days, I recognise this as encouragement and I feel glad that they are kind to me. On bad days, I wish they’d just stop. My illness isn’t about how I present on the outside. It doesn’t matter if I “doing well.” I might “look better” but my spine is still attempting to fuse itself together and I live with the pain of that every single day.
If I’m using my cane, people might think I’m a fraud. If I’m not, people might think I’m a fraud. There’s no way to win.
I get very tired of fighting. I get very tired of explaining my illness, its origins, and how it effects me.
I get very tired of seeing my friends in similar situations left crying on the street because someone wouldn’t believe them.
I’ve said it before and I’ll continue saying it. People’s bodies, brains, and abilities are their own business. If they tell you something about how those things are for them, accept it. It probably takes more courage than you know to share that information.
Let’s let people with disabilities on the bus, not throw them under it.
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