Thursday, April 17, 2014

Being Disabled VS Having a Disability

The other night, Mama Sharon (Charmaine's mama) asked me a question and I didn't have a good answer for it. She had been reading my blog and wanted to know, "Why do you see yourself as disabled?"

And I suppose the truth is, I don't.

I think I used the words once for a blog title when speaking about unrequited love on Valentine's day and I wrote "I have a crush (I'm disabled, not dead)" because I think I am super cool when I use catchy titles like that (alliteration for the win!) but generally I don't say I'm disabled because I mostly don't think of myself as disabled.

By all medical accounts, I am disabled - I have been since I was a child and here is why:

As a child I was diagnosed with multiple chronic illnesses, forcing me to miss a lot of school. Cumulatively, I missed over a year and a half of schooling.
I am not disabled because I completed my schooling. I completed it in anyway I could, and I completed it with quite a good mark too. I got into university, and I am almost completed university.

As my neurological symptoms progressed, there is many more reasons I could list as being considered disability related:

  • I fail neurological exams on my left side
  • I struggle to walk down hills, particularly with uneven terrain
  • If I was going into the Hunger Games, I would die (don't lie: you would probably too)
  • My arm prefers to be in a bent position
  • My fingers do not move fast enough on my left arm to play the piano (well there goes my chances of being the next Mozart!)
  • I struggle with aphasia, some times more than others
  • I have had friends have to feed me, give me meds, transfer me, and learn sign language for me
  • I struggle going along the rows at the movie cinema and in auditoriums
  • My left hand has a weak grip - I often drop my keys and other items (don't worry: the iPhone is still in one piece)
  • You don't want me on your team for Survivor
  • My gait has been documented in many different ways. I mostly refer to it as "just mildly stupid"
  • My fine motor skills are lacking on my left side including my hand writing and skills like make up and nail polish. If anyone wants to look like their three-year-old did their make up for them, I have those mad-skills.
  • I struggle with aspiration of thin liquids
  • I can never leave the house without my AAC and my meds bag

For all intents and purposes, medical professionals would consider me as disabled or someone with a disability.

Then why don't I really think that? Because I don't, not on a daily basis. Yes, I can get pissed off when I can't walk on the sand or something like that. But I don't think "Woe is me, I am disabled." I more think "this is one of the most terrifying things I am trying to do. Left ankle now would be a great time for you to cooperate"

There is a quote by Scott Hamilton: "The only disability in life is a bad attitude"

The truth is... I can't stand that quote. I hate a lot of the pictures that go with it - "inspiration porn", as it is termed. I find that quote offensive. Try telling my friends that if they just changed their attitude their multiple and complex disabilities would disappear; they would suddenly not be mobile and verbal if they saw life a bit more positively. That quote strikes a nerve with me.

But I see what the quote means. I do see the tiny glimmer of truth.

Attitude undoubtedly helps a situation, I have never denied that. You cannot do anything in life if you do not have the will to do it and the belief that it is possible. Recently, I did change my attitude. I was in a position to decide I could improve. I had the support of close friends. Here are the ways in which I have improved:

  • I can walk down stairs independently
  • Not only can I walk down the stairs independently: I can assist Charmaine down the stairs with no trouble.
  • I have mad typing skills. I am not even sure how I do it, but I am fairly sure I use the ring finger of my left hand a lot (whereas I used to use my pointer finger).
  • I can sit on stools and chairs without backs
  • I can cut my food easily using a knife and fork
  • I would push you off the cliff in the Hunger Games first, so I would hopefully not be the FIRST to die
  • I drive very confidently
  • I have gross motor strength.
  • My gait is now "mostly not stupid"
  • I have an ability to communicate always, one way or another. My friends know the important signs, including all the swear words.
  • Although I still prefer to sit cross-legged, I can sit comfortably in other positions
  • I take Epilepsy medication and that has helped a lot
  • I have CONFIDENCE to do so much more now
  • When people don't treat me as though I am disabled, then I am not.
I might have a disability, in all official accounts. But the very term disability says not being able to do something. I can do everything I want to do - I always find a way. I mightn't be able to shuffle into the middle of the cinema row, but I can sit on the edge. The movie is just as good there. I use a friend's arm to help me walk on the beach - the beach is just as beautiful, potentially even more so when you are in the company of those who you love.

The disabilities don't disable me, really. Because I have my life. I do what I want and achieve a lot. I have always said I will, and I can. I recently made the active choice to not accept the motor neurological deterioration the doctors were seeing. A most beautiful friend said to me "Good. Because you still have a lot of life left to live".

She's right. I do.

I am always finding ways to improve. The other day, I carried one plate in each hand. These plates were heavy, I almost dropped them, but I didn't - well done left wrist. My friends are always fixing my left arm when they see it bend or twisted in a position it should not be in, when I don't notice it.

If my disabilities don't stop me from being able to do anything I dream of, are they really disabilities?
If I can work a way around them to live my life, am I actually disabled?
Or is that just what society says?

In other news, I am changing my AAC. More on that soon...


  1. Admiring you. I love the quote: "If you can dream it, you can do it!" You are personification of that!