Not Disabled Enough

You see that title? Pretty strange thing to write about and explore but let’s do it.

As you’ll likely know, I have Becker Muscular Dystrophy, a progressive muscle wasting condition that gets worse over time. I’ve known about it all my life, and I live with the knowledge that one day I’ll lose the ability to walk. It’s not sad, or tragic, it’s my life and I’ll do my damn best to live it.

It’s weird to consider that I effectively had a dormant disability. That’s not to say it didn’t manifest itself at a young age but more that it’s severity wasn’t yet visible. I remember having aching legs when I did too much, struggling to keep up with the other kids.

I remember trying to play football with them, despite my limited understanding of it and constantly being told no as they knew I had trouble with my legs.

Until one day where a boy said okay! He told me I could be a sub – I didn’t know what this meant, I was just happy to play. I later learned that this was short for substitution, and by and large you don’t get a substitution in a kids game – you know, not having a manager and all.

It hurt. So I didn’t try again.

You tell them Jack

Of course children are wonderful miracles, but they can also be dicks.

What? Someone had to say it.

I spent much of my time after this trying to hide my disability. I had a particular walking gait that I didn’t notice until later, and a tendency to tip-toe when I was sore or tired. I tried to fight this so much, just hurting myself more by forcing against the muscle contractions. My calves were noticeably large – a symptom of MD named hypertrophy and getting up from the floor, I exhibited Gowers’ Sign – a very particular way those with muscle wasting diseases get up.

The tiptoeing was pointed out by a P.E teacher, loudly, and in front of everyone – thanks Mr Kelly! He dressed me down in front of everyone after a swimming lesson.

I outed myself in defence to explain it, in front of a changing room of other boys. He dismissively told me he knew lots of people with MD who never walked like that and to stop it.

I was so upset that I got my mum to arrange for a doctor’s line excusing me from P.E permanently. His ableism ostracised me from the rest of my class, if only we had the support structure to call this out 20 odd years ago. The gait was noticed soon after by another kid, and people started calling me spastic and spazzy legs.

To this day, I will react angrily to anyone I hear using that word as an insult or to describe someone. It’s not okay, and you’re an absolute asshole if you think for a minute it is.

Sorry. Even thinking about it hits a nerve.

The bullying came after, months and months of being insulted, pushed, called and being called those spastic. I cried a lot, thinking I didn’t belong. I had a few friends, but even they sometimes would join in. It came to a head one day when I snapped.

There was one particular person who used the word and was getting others to pick on me. I saw him in the street on my lunch break, punched him and walked on. I didn’t need to explain why, he knew.

I’m not condoning violence to be clear, I felt I had no other choice.

Shortly after, his cousin came for me. He was ‘the best fighter in the school’. a dubious honour to be certain. He saw my friends and I on the street, there were five of us when he spoke to me. I turned around and three were gone. He asked what I thought I was doing, and why I hit his cousin. I told him, and he replied ‘that’s fine then’. That’s when people stopped bullying me for being disabled.

In my late teens, when I was able to go to the pub, I went back to hiding it from girls. I was embarrassed by it, thinking it was a reason nobody would like me or fancy me. I pushed through the pain when my legs ached, all in aid of being seen as ‘normal’, Tracy changed that.

Now I’m older and wiser but I face another strange thought. I’m not disabled enough. I know how bizarre that sounds. Disabled enough for what?

When I park in an accessible parking bay. I get stared at.

When I get out of the car, I get stared at.

When they see my walking stick, I get stared at.

When I get in my wheelchair, they stop looking.

This is close to every damn time I park my car. I’m clearly not disabled enough.

Is this what it takes to convince people?

This only gets worse on a day where I try not to use my stick. You know, to prove to myself I can still walk a bit.

This has carried over to my blogging and Instagram posts. Now I get self conscious of using photos where I’m standing, with or without the walking stick, as I think maybe I don’t appear disabled enough.

Now I know this is stupid, but it’s not any less real. Will people stop caring what I have to say, or show interest in my content as, ‘well, at least your legs work better than…’? It’s a real problem I have.

As I’ve highlighted, this is irrational. I’m part of the disability community, all of our experiences matter and we all add to the wider conversation on life with a disability and the challenges of living in a world that isn’t made for us. Our contributions, regardless of size are important.

I’ve got some work to do on myself. I think most of us do, but I have to get over my feelings of not being disabled enough to matter. I know I do, I just need to learn to trust in that more.

5 comments

  1. This is a great read Joe. A big well done to you for sharing your thoughts about living with Muscular Dystrophy. I raise money for Muscular Dystrophy and will be doing my 3rd London Marathon this year to raise money for the MD charity. Keep up your great work πŸ‘πŸ‘πŸ‘

  2. Your childhood story is so similar to my partners. He has fsh md. For a long time he would also be stared at but as soon as people looking saw his ‘funny walk’ or later down the line me getting his chair set up they would walk on as if they had deemed it okay for us to use this spot or use that toilet.
    Thanks for sharing.

  3. Mean and kind words can last a lifetime in someone’s head. Always time for kind, never time for mean. Thanks again for sharing perspective.

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