Look and Stare, I'm proud to be Sabled

Having Muscular Dystrophy doesn’t always make my days go by with ease but in the last 19 years I have never stopped doing what I wanted to do.

I went to University and pursued to gain several degrees, I left and carved myself a career as a teacher and since then tried my hardest to be as active as possible for the boys; something that I would hope that you would see through the different activities that we do together.

Mentally I don’t see myself as disabled but quite often life likes to remind me that I am.

This can, at times, be tough but I am also incredibly stubborn and because of that I won’t stop doing the things that I want to just because I find something difficult; I have always had the attitude that there is always a way around things so I can join in.

The hardest thing for me was, and still is, how it would affect the Boys. I have, subsequently, always tried to push myself to be able to provide a relatively ‘normal’ life for them.

Recently I have noticed that William has started noticing that people look and stare at me when I am walking.

For him, as well as James, I have just always been like this, they know no difference. Yet, recently, William has vocally brought to my attention that he knows that people stare.

When we visited Walmer Castle last month William verbally stood up for me and although I am incredibly proud that he did this it did sadden me deeply that he felt that he had to.

The Castle grounds had beautiful shingle paths to walk through the garden. Shingles for me is like competing in the Krypton Factor or the Cube:

“The next Challenge Martyn must face is to walk across unsteady tiny stones over a 10 metre stretch without losing balance…..set the timer”

William is a great kid and has found himself almost in a ‘Carers’ role where he will walk with me and just make sure that I am O.K.

Whilst I was tackling the herculean challenge some children, with their parents, started staring, pointing and laughing at the way I walked. I could sense William was getting cross but there was nothing I could do apart from focus on walking and keeping balance whilst also making sure James didn’t walk to far ahead. This was fine until William shouted “This is my Dad, it’s rude to stare”

These children went red, their parents said nothing but they quickened their pace and hurried their children along with them.

(I am sure they were mortified and part of me hopes they were enough to have a conversation with them later)

I am used to looks and stares, sniggering, laughing and even the occasional pointing but my worst fears were realised that this transference had affected William.

We have two terms in this house “Sabled” and “Silly Legs”

Both of which were introduced by William at a young age and seemed to stick enough to the point that both boys now use the term.

‘Silly legs’ are quite apt as they are silly and at times with minds of their own. I have heard James recently just come out with “Yeah, Daddy has ‘Silly Legs’” when speaking to other children; which most children just seem to acknowledge as a given, reasonable, fact.

‘Sabled’ is literally anything.

“Daddy if I’m sabled like you I will play the Piano” or “Daddy if I’m sabled like you I want a fast car”

(This was when I told the Boys I was getting a new car on the Motability scheme)

I quite like the latter term as it’s never used in a sentence that makes me sound ‘weak’ it is usually an associated fact that means I do something else.

I recently read a great article by the Huffington Post about a girl with Cerebral Palsy where she made a powerpoint presentation for her school about living with a condition that means that people stop and stare. She spoke about how it isolates and upsets her and not because she feels like she is being targeted but because people judge her on that and not how able she is.

She clearly made the point that she doesn’t see herself as disabled but different and to the extent that she is just Diff-able.

I watched the Video and it brought a mix of tears and smiles.

Like her I am proud to be Sabled as that doesn’t limit anything that I do. I am sure I am more able to do something than others; playing the piano for example.

I will be showing William this Video with the hope that he can see that other people get looked at but they can also do more than what others can

How do you, as parents, address the questions that children have about people with disabilities?