As someone who lives with muscular dystrophy, uses a wheelchair full-time, and works as MDUK’s Employability Officer, I felt it was important to write something to mark this month. I wanted to speak about this partly because Disability Pride is something that doesn’t gather a lot of attention, but also to hopefully give people the opportunity to think about their own disability in a new way.
I’ll be honest, this hasn’t been easy to write. I spent a lot of time looking into when and where the month started and what other disabled people have said. I even looked up the meaning behind the Disability Pride Flag (yes, there’s a flag!). But what I kept coming back to was my own relationship with the term “disabled”.
For periods of my life, I really struggled to call myself a “disabled person”. I didn’t want my identity to be reduced to this thing that makes my life harder. I didn’t want this part of me, that I was ashamed of, to be the main thing that I call myself.
But now, I can quite confidently call myself a disabled person. In fact, I find the ability to say “I’m a disabled person” oddly powerful.
As a result, I thought it would be good to talk about what I have learnt during my journey of acceptance.
Shift the focus
The word “disability” is often seen as a dirty word. But it doesn’t have to be. The social model of disability says that it’s not our condition or impairment that makes us disabled, but the barriers in society that disable us.
This model helped me stop seeing myself as a problem, and instead focus on what solutions I could find out and put into place.
The wheelchair is not the enemy
It’s fairly common to look at the need to use something like a wheelchair as a negative. To many, it provides an obvious reminder of their condition and signals, “yes, I’m disabled”.
But to me, wheelchairs aren’t a negative. They are tools we use to engage with the world. We all use tools every day – it could be a car to get from A to B, an oven to cook food, or in my case, my wheelchair to get about.
In my job as MDUK’s Employability Officer, I help people living with muscle-wasting conditions to improve their career prospects. What I’ve learnt is that the biggest difference between those who are successful in getting work, and those that aren’t, is the ability to sell yourself.
I can remember when I first used an electric wheelchair. The sense of freedom was exhilarating. All of a sudden, I didn’t have to struggle. I could get about without feeling exhausted. And this was only possible by accepting that using a wheelchair made my life easier.
Don’t sell yourself short
In my job as MDUK’s Employability Officer, I help people living with muscle-wasting conditions to improve their career prospects. What I’ve learnt is that the biggest difference between those who are successful in getting work, and those that aren’t, is the ability to sell yourself.
Living with a disability, it can be easy to look at a job description and focus on the parts that you can’t do. If you’re a disabled person reading this and struggling to find a job, I’m here to tell you that you will add value to the workplace. You have skills and experience that will make a difference. And the right employer will put support in place for you to reach your potential.
It’s the small things
I’m someone who is generally positive and optimistic. I’ve lived with my condition for my entire life so I’m used to most things now. Despite this, I still find being disabled incredibly irritating. However, it’s mainly due to the mundane things in life. It’s the fact that everything takes more planning. Or there’s another form to fill out. Or there’s something on a shelf that is slightly out of reach.
I’ll give you an example. A friend and I decided we wanted to see a show together in the West End. There was one that I’d heard about and thought we’d both enjoy. I looked at the theatre’s website and found that the show was inaccessible to me. Annoying, but I tried to stay positive.
I kept looking at what else was on. I started the pattern of searching for other options, finding something we liked the sound of, identifying the theatre, going to that website, finding the access page, checking the relevant information, and so on.
It might not sound like a lot. And it might sound inconsequential compared to the potential impact of living with a disability on my health. But this is the sort of thing that I find myself thinking about and getting irritated by on a much more regular basis.
It’s part of me
I’ve spent a lot of my life thinking about my disability, what it means, and who I’d be if I wasn’t disabled. In a very practical sense, it would be lovely to wake up tomorrow morning and no longer be disabled, even if it was just to not have to worry about booking my next theatre trip.
But if I had a magic wand that could go back and change my entire life to my not having been disabled, would I do it? The answer is no.
Everything I’ve experienced up until now has got me to where I am. If it wasn’t for all of that, I wouldn’t have met my friends, my wife, and we wouldn’t have the life we have together. I’m incredibly lucky to have a supportive and loving family.
My experience of having muscular dystrophy and being disabled has played a significant part in who I am and what I have, so to change that, would be to potentially change everything.
Food for thought
Has anything helped you see your disability in a different light?
Do you use a wheelchair or other mobility aids to help with your everyday life? How was your first experience of using it?
What are the small and mundane things that get on your nerves as a disabled person?
If you have a muscle-wasting condition and are looking to get into work or move up the career ladder, MDUK’s employability programme Moving Up is here to help. For more information email movingup@musculardystrophyuk.org