I was recently reading a very interesting discussion about the recent release of the movie, 'Me Before You' - a movie about a tragic person with a disability who takes his own life. The movie is based on a book and is a real tear jerker. The discussion circles around two main points of issue, first that - once again - the actor playing the part of the disabled person is an able bodied person despite the vast availability of talented actors with suitable disabilities to play the part, and secondly, that the characterisation - once again - plays into the duality that is often depicted of people with disability, that they are either tragic victims of their disability, or that they are heroes.
I have often encountered this duality. I am constantly 'complimented' about my 'achievements' in 'light of my challenges' - you know, as if having and raising four children, learning to speak, read, and write three languages, fail high school, and still manage to start and complete an undergraduate degree, grad. dip., and two masters is a walk in the park for most people. Yes, I do want acknowledgement that I work hard to overcome the obstacles presented by my disability, but everyone works hard to achieve the things I've done - hard work is part of the contract, I knew that going in, and I do not expect things to be made easier for me because I have a disability. I only expect them to be made FAIR.
I do not want to be a hero for doing the same thing other people do, I only want a level playing field to achieve the same achievements taken for granted by others.
And then there is the other end of the spectrum.
Do not pity me.
My life is not tragic.
Yes, there are times when I feel terribly depressed because I may not see Ari as a grown man, or because I will never have a motorbike licence. I would have loved to be a brain surgeon, but oh well, with my level of distractibility, it's probably a good thing that wasn't an option.
I was having a discussion with friends about labels, as we're going through the process of having one of our boys assessed and the question came up - is the label really necessary, can't we just treat the symptoms? I've spoken about this before on the blog. The label is shorthand for a group of symptoms that may impact the person, it quickly identifies a situation. It should never excuse behaviours, but rather inform the possible cause of a behaviour - note I say POSSIBLE (you can never know for certain when a behaviour is caused by a biological or sociological stimulant, everything should be considered). Having the label allows the sufferer and those who work with the sufferer to implement strategies to work with the symptoms, and COUNTERACT symptoms which negativity impact the sufferer's life.
I have labels as long as my arm. I refuse to use them as excuses to do less. As I said to a friend today - in my PhD, for example, I read many times slower than my peers because I suffer from tunnel vision (it's like looking down a straw when you're reading, I can't see the whole line), and nystagmus (my eyeballs shake - so now I'm looking down the straw and the straw is shaking), and I'm very short sighted so I need large print - well, now I actually need a close circuit tv to read print. So, I eventually had to ask for extra time on my PhD because I couldn't keep up with the reading despite spending many, many hours reading. Let's say I read four times slower than my peers, I didn't ask for four times extra time, I asked for 1/4 extra time, but - as I've always done - I'm working a lot harder. A lot of people have no idea how much harder I actually work because I play it down because I often feel the results don't reflect the effort (so, now I'm outing myself, but hey, I'm sure no one will read this, hahaha). My point is the label does not make you a hero or a tragic figure.
Having a label only informs you of the adjustments that need to be made to create a level playing field. The rest is very much up to you.
My life is no tragedy. I am no hero.
Once I have my level playing field, I'm exactly like anyone else.
Acknowledge my need for a fair go, I'll do the rest.
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