Monday, 16 December 2013

And here we are again. *sigh*

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

6 comments:

  1. So many of your posts have helped me in some way or another, more often than not they offer that moment of 'OMG I'm not going mad or making this up or even alone in having a wonky ANS'.  This post however touched a pretty raw nerve (so to speak).

    It is indeed the reaction of high profile personalities on Twitter (and in the media in general) who perpetuate this lame-ass culture of humiliating others just because they have such limited a understanding of why someone may require the use of any kind of mobility aid.  

    It is incredibly embarrasing lying on the cold hard floor of a department store unable to get up waiting for an ambulance to bundle me off to hospital. It is incredibly uncomfortable having acquaintances see me in my chair for the first time as they have no idea I was even sick telling me how well I look. It is incredibly awkward trying to explain why I will be in the chair somedays and not others. I do truly respect that it is confusing for people who don't know my whole backstory to see me walking some days and not others, but it still sucks from where I'm sitting. (Hmm might be time for that reveal all facebook post to my friends...)

    I got my wheelchair only two weeks ago and have just started using it to get out and about.  I feel really self concious about using it & yet it returns a range of lost freedoms to me. That whole extensive repetitive internal dialogue about feeling like a fraud and that I am being disrespectful to people who can't get out their chairs for love nor money. I can walk quite a distance on a good day, heck I can even dance. Just don't ask me to stand still, not even in the shower!

    It was not an easy nor comfortable decision to make but it is one that has led to my life opening up once again. It means I can go out to a friends art exhibition opening and not upstage them by lying on the ground unexpectedly turning the colour of their green painting.  It means that I can use it in the mornings to potter about the house while my blood pressure sorts itself out and then park it out of sight for the rest of the day. It means that I have a few more 'hero' days, that the 'halfway to zero' days are not as isolating and that the 'Zero' days are futher apart.

    Thank you Michelle in many bucketloads for your blog and your tweets. you have helped me so very much through sharing your story and for the stories that your readers share too. 

    Seasons greetings to you all.
    Helen

    ReplyDelete
  2. Agre with you totally. Am a fan of his, especially due to his dry wit, am disappointed to say the least by this. I have Kearney a ton fom your blog, maybe he would too? Tweet him. See f he has the balls to respond....

    ReplyDelete
  3. The downside to tweeting is that people can quickly and easily make a fool of themselves. Considering Mr. Fillion recently spent an episode of Castle in a wheelchair due to a leg injury, and was able to get up and walk on crutches, one would think he would be aware of the varied and diverse population that uses mobility assistance. It is sad that someone who is so admired seemed to miss the point entirely. This girl wanted to see him so much that she braved a crowd despite illness or injury, and that should be been the message, not that "gasp" someone using a wheelchair can also walk.

    ReplyDelete
  4. I, too, am disappointed to learn of this tweet. It probably never occurred to him that this woman he mentioned might have used all that day's mobility for the chance to get a photo with him. I have met celebrities in my wheelchair, and unless they are also sitting, photos with them sometimes look awkward due to the height difference, so I state that I can walk very short distances and leave my chair for a moment, have someone take the photo, and go back to the chair. So far, no derisive comments that I know of. I don't give a rat's patootie if people judge me or not. But it would be nice for everyone's sake if celebrities would think more before they tweet.

    Two positive experiences I have had with celebrities: William Shatner and Alison Arngrim, who played Nellie Oleson on the American TV show "Little House on the Prairie". Both were quite pleasant to me. And the second time I met Alison, she actually remembered me, even though it was two years later and in a different state from our first meeting. She really liked how I had decorated the rims of my wheelchair hot pink (my previous chair was lost once by an airline and once by a hospital, even with my name in silver marker all over it, so I made it more distinctive).

    The only solution I can see to the inconsiderate tweet issue is just what you have done, calling attention to it and letting people know what it is really like to be the one in the chair. In America, the two hosts of a morning talk show, Kathy Lee Gifford and Hoda Kotb, made fun of people using wheelchairs in airports and then walking short distances, suggesting they were faking a disability so they could get on and off the plane first. They were flooded with online responses by people telling them how inconsiderate they were. I don't know if they ever apologized (I didn't like them even before this incident and refuse to watch their show), but maybe we'd have more luck with Mr. Fillion? I'd hope so, because I'd like to think he is a good man.

    ReplyDelete
  5. oh Nathan! have you sent him the link* to this blog, coz if you don't, i will … xt

    (*ps. only with your permission, of course)

    ReplyDelete
  6. Once again I have been left speechless and thankfully you have not. Your words echo my sediments exactly...as always. Thank you....

    Jane

    ReplyDelete

All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx