Today this came up in my Twitter feed.
And I felt myself let out a big disappointed sigh.
I'm a big fan of Nathan Fillion. Firefly is up there with my all time favourite scifi programs (one season was seriously not enough, though the movie Serenity did help soothe the loss). And really this isn't a post to slag off at him personally. He's not the first to make note of people who can walk using wheelchairs as a joke. Or even an object of derision. Or, as many have found, an object of abuse. But his tweet grated. And given some of the responses it would seem I'm not alone.
You see it's not even this single tweet. It's fairly tame as these things go. Though in a way that makes it worse. It's that subtle and casual message that some people don't meet the mark of real disability and therefore lose the right to respect, and become the object of a joke. It highlights the challenges many of us, myself included, encounter when we are able to walk a short distance but need a wheelchair for longer distances, or longer times. It highlights the general lack of understanding in the community. And the pervasive idea that disability can only be defined by a very narrow set of parameters. And I doubt we would have seen a tweet that read "Girl in wheelchair, wheeled over to get a photo with me"
I've spoken at length about my experience with a wheelchair. But for the new reader let me sum it up in a few dot points.
- I have a disorder which for the most part isn't visible.
- I can walk short distances. Eg if the disabled toilet is locked or in use, I can grab my cane and stumble to the regular loos if desparate.
- I cannot walk long distances, eg 50m is a stretch.
- I cannot stand for prolonged periods. Some days that is 10 mins, others 10 seconds.
- I am fatigued by even small amounts of standing or walking.
- Standing or walking can leave me throwing up, falling down, or comatosed for a week.
- If I don't use a wheelchair I can't really leave my house.
- I have worked long and hard to get to the point of accepting that I need to use a wheelchair.
- I know other people judge me for looking well and being in a chair, for looking young and being in a chair, for getting out of my chair and walking 3 steps or using my cane to go to the loo.
- I live with that every time I go outside my home, and dare to use my wheelchair.
- I hate having to use it and what it represents for me and my health.
- I hate that other people have limited ideas of what disability means.
- I hate that other people feel that me getting up out of my chair is a joke. (And yes, I know people who have had things like "it's miracle!" yelled at them when they get out of their chair for 5 mins.
- I hate that I have to justify and explain it's use. Again.
I also know that Nathan Fillion doesn't know all this. And neither do the majority of the community. Hence it is note worthy, or humour inducing, when people manage to leave the confines of a chair for 3 minutes, when they are excited to meet one of their TV heroes.
The old responses, "get a sense of humour", "it's a joke, people" (not by Mr Fillion I want to make clear, but by some of his followers) etc, assume that we disabled folk don't have a sense of humour. Let me tell you, when you are dealing with severe chronic illness for years on end you have to develop a sense of humour. Quite a good and dark sense of humour in fact. It's a survival mechanism. The idea that it is joke and it is my fault for getting pissed off, is aimed at silencing my voice. Shut up and don't be heard faux-wheelchair girl. "It's a joke" continues to be the excuse of choice whenever those who are the target of a joke dare to raise their voice.
Am I too sensitive? Probably. I have lived with this for years now. And it impacts me every time I go out. When you deal with ignorant and hurtful comments on an ongoing basis, it kind of sensitises you to these things. But I am not here for your entertainment. My disability and declining health, not fodder for amusement. And should I meet a favourite celebrity, not worthy of a wry tweet.
For years I avoided using a chair even when I really needed it, because I knew attitudes like those above were the consequence. I had internalised them to mean that I obviously didn't need a chair because I could walk 20m. I was a fake. A fraud. Breaking through those thoughts took a long time and much pressuring by my family. I fight those feelings every time I plonk my bum in that chair.
So,
Dear Mr Fillion, I will continue to love Firefly. How could I not? But I will now carry a little pit of disappointment with me, that you think a fan getting out of her wheelchair to get a photograph with you is worthy of note and humour.
Michelle
