Tuesday, 1 May 2012

Reality versus Perception

This post is part of Blogging Against Disablism Day 2012.


I want to talk about perception versus reality.  I, and those who are close to me, have a completely different perception of my life, than those I meet in the street, or those that meet me in hospital.


Medically, I'm not exactly in prime condition; I'm artificially fed, wheelchair bound, have a heck of a drug regime and a list of medical conditions that makes most flinch.  That's what the medics see, and the people who only briefly come into my life, but it's just one part of my life, a small price I pay for generally a wonderful life.


Now I think I'm fantastically lucky, away from hospital and all the medical appointments, I think I live a rather fulfilling life.  I'm a student, I've been doing a Masters degree, since 2008 (unfortunately not finished due to several extensions thanks to my health, but it WILL get finished), I'm a volunteer doing a variety of different placements- many in the health care setting, to help with future plans, and I'm also a rower.  I want to take this as far as I can.  It's going to be a challenge, but I'm up for it.  I'm at the gym 3/4 times a week doing Pilates, Yoga, weights and cardio to become the athlete I dream of being.  The first artificially fed Paralympian perhaps; I did Google it and I couldn't see anything about former Paralympians and artificial feeding, but I may be wrong.


I was asked by a Registrar today if he could bring in some medical students to do abdominal exams on me, and as I was chatting to him, he was quite surprised to find out about the person behind the body lying in the bed (unfortunately, I'm in hospital at the moment).  It's rare that a doctor, unless they are in your life regularly, gets to learn about your hopes, dreams and aspirations, and that's only if you're willing to raise them and see what can be done to make them happen, because let's face it, often health is the thing that makes many of them difficult to achieve.


Perception is very objective though. I was at an outpatient appointment carrying my gutter frame after yet another failed attempt to get me safely standing, I was queueing to get my parking refunded, oh, I also drive a "VW Caddy, I-can, Drive from" which is adapted with Paravan Space Drive hand controls, anyway back to the point of this.  Two volunteers approached me and as I was chatting to them, I mentioned how lucky I am with all the things I can do, and they told me they didn't think I was lucky.  I was actually quite offended by this.  Surely whether one is lucky or not is in the mind of the beholder, and not something someone else can judge.  Just because I don't fill their perception of "normal", therefore I can't be "lucky" is sadly a reflection of the wider society.  This attitude is just one that needs to be challenged.  It is something I come across regularly, and it just seems to widen the gulf between those with significant health impairments and those without (or whatever terms you choose to insert there, but you get the idea).  All I can hope is that those who come in to contact with me, go away and challenge their own thoughts about these things.  Now I know that won't happen in most cases, and in reality may never happen, but I can live in hope (or is it delusion?!)


Being disabled, although I am reluctant to use that word, as it's not something I readily ascribe to, it's somewhere at the bottom of the list of things I would describe myself as, isn't all there is to me.  It's just one part of me, that most people can't look beyond.  My response to the attitude is that if they can't see me for the hyper active, slightly eccentric, up for a challenge, weirdo that I am, then I don't want them in my life, it's as simple as that.


Philosophically, I view my wheels etc... as a filter for finding new relationships, not just of the sexual nature, but for friendships as well.  If someone can't handle that part of my life, how will they ever manage to deal with the rest of me, which is much harder work to keep up with?!


Life is a challenge for us all, disabled or not, it's just that people can see the challenges they assume (incorrectly, of course), are the biggest ones for me.

12 comments:

  1. A very well written and thought provoking blog post, thanks for sharing.

    Take care,
    Molly

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    1. Thank you Molly, that means a lot to me.

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  2. "I was actually quite offended by this. Surely whether one is lucky or not is in the mind of the beholder, and not something someone else can judge. Just because I don't fill their perception of "normal", therefore I can't be "lucky" is sadly a reflection of the wider society."

    This. So very this.

    Thank you for saying it.

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    1. Thank you for reading and commenting. It's much appreciated. I'm glad it rang true with you as well.

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  3. It makes me crazy that people think they can judge and assume what someone else's life is like and how they do/should feel about it! Grrrr.

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    1. Many apologies for my slow reply, I've not been too well. It's crazy, one of the questions I get asked the most is "How can I be so happy, even though I'm in a wheelchair?" Now maybe I missed the "you must sulk/be grumpy/angry etc..." instruction in the manual with my chair, but I think it's people projecting their own preconceptions onto my situation, either that or I haven't read the manual properly!!

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  4. Nice post! I've got a question, though: why are you reluctant to use the word disabled? Society often gives the word a negative connotation, but I find that we should be fighting against the connotation instead of the word... Then again, it's up to each of us to choose how to describe ourselves, when we want to describe ourselves.

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    1. Thank you. I think there's a number of reasons that I don't like using it. The first is that I don't think it's the largest part of my life- If I'm going to be labelled I want them to be in the order of importance to me and the way I want to be seen. I guess part of it is though that there's such a negative connotation about it, that I don't want to add that to my battles. If I don't bring it into the equation, I find it harder for the other person in the conversation to keep it in the equation. Maybe by not bringing it in myself I'm actually challenging their connotations, but I suspect that's just my wishful thinking. I agree that we need to fight the connotation, I just wonder what the best way to do it is. I think the more positive light we can spread on the abilities of disabled people we can start to challenge people.
      I guess I also feel a bit guilty using the word, I'm not particularly restricted by my situation and wonder if I'm doing a disservice to people with much more profound disabilities, although of course, I could just be in denial about my situation.
      Sorry I've rambled, and I guess not really given you a clear answer.

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  5. Excellent post. If people can't see beyond your disability to the awesome person that you are, it's truly their loss. :)

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    1. Why thank you. It still stings a bit when you get snubbed because of it, but definitely their loss.

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  6. I found this both inspiring and comforting to read: I'm sure that if my daughter could talk she would say the same. Her disabilities may define her in the eyes of others, but she certainly acts as though she has the most entertaining and enjoyable life imaginable!

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    1. Thank you, and that's wonderful to hear, from what I've read of your blog it also sounds like she's got a wonderful parent in you, which I'm sure adds to her happiness.

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