Personal stories

Life as a disabled man: What is normal anyway?

Dr Jon Rey-Hastie, an adult who lives with Duchenne muscular dystrophy, shares his story of living with a disability.

I don’t consider myself a typical man, by any definition. Sure, there are certain things I can tick off that increase my sense of manhood – I live in my own flat, I have a job, my own car, friends who I see regularly, and even a pet I take care of. My interests include gaming, IT, film, theatre and politics. This is how I see myself, and to me this feels fairly normal. But I also see the reactions of other “normal” people whenever they see me, and that reminds me each time that my life is remarkable in some way. Reactions vary from the sublime to the ridiculous. You have the random passers-by at the the theatre who congratulate me for getting out (this has happened twice in the last year). Or the people that very respectfully go out of their way to ignore the obvious visual differences they are presented with and pretend they don’t notice. All very polite, but you know that their internal dialogue is having a Fawlty-esque “Don’t Mention the War” moment.

In general it’s just the odd glances, the staring, the hushing of kids’ innocent questions, or the desperate attempts to try and help or get out the way, anything just to relieve the suffering of that poor man. Good or bad, understandable or not, these encounters always remind me that I’m different, whether I personally feel it or not. There’s no blame here, if situations were reversed I expect I’d be curious, ignorant and desperate to help in equal measure.

I still enjoy challenging perceptions by pointing out the similarities, and the occasional normality of my existence to people when they don’t expect it…when they’re at the shops, the post office or at the theatre and bam! I’m there saying yes, I do this too! But when that novelty wears off, I realise I cannot escape my difference, so might as well embrace it. I just try not to get myself into an existential knot trying to figure out if I’m bowing to societal pressure by trying to be normal, or by being different because everyone is telling me I am.

We’re all different in our own way, I suppose. My differences are just a little more obvious. I have Duchenne Muscular Dystrophy, a genetic muscle wasting condition which began in early childhood and causes my muscles to waste away. It’s not motor neurone disease (think Stephen Hawking), which starts in adult life and progresses very rapidly indeed. It is instead something I have always known, which made me physically slower and weaker than my non-disabled peers from age 3 or 4, and has got steadily worse over time. Walking got harder and harder until I started using a wheelchair at age 10. My arms and legs continued to get weaker until I could no longer lift heavy objects, then couldn’t open doors, then put my arms above my head, then raise my hand to scratch my face or brush my hair. Now, I can only move my hands an inch either way on a flat surface, meaning I can use a computer or drive my wheelchair but not switch between the two independently. Breathing got harder in my early 20s, as I started having to use a ventilator overnight, then during the afternoons, and, in the last year, 24 hours a day. I take medication to keep my heart ticking over.

Looks-wise, there’s the wheelchair. Then there’s the ventilator, either a discreet mouthpiece that looks less scary or if I’m feeling tired, a mask that goes over my nose and makes people assume I’m dying (aren’t we all, anyway?). There’s the lack of movement and inability to shake hands or wave. And if it’s a sunny day, you might see my drastically wasted arms and legs.

I’m sure this might look and sound horrifying to anyone with a normal range of function, but I’ve got used to it. And although there’s an overall downward trend in my life which characterises my functional ability, there’s also an upward trend of learning, personal development and career progression, as well as new technological advances which enhance my ability to participate in society. Last year I lost 30 minutes a day of breathing independently and the ability to lean forward in my chair, while gaining an ability to use a smart phone (linked via bluetooth via my wheelchair controller), a promotion and a salary bump. This year I opted to switch to a different job. It’s not all bad. Of course, in the general scheme of things I’d rather earn a pittance for some boring job and have all my functional ability back, but hey, we deal the cards we have.

In many ways, I’m lucky. Like everyone else, I look at people who are worse-off than me and rationalise the less than ideal parts of myself. It’s a natural human tendency, I know I play the role of the “worse-off” for others and don’t blame them for it, others play that role for me. I know there are many people with Duchenne who experience pain regularly, and who haven’t had the support and encouragement to succeed, and even more who have died before they could even think about adult life. There are those who do not get to choose their care providers, and as our recent research has shown, are often treated like children by a social care profession ill-equipped to look after young men appropriately.

I’m not one of those people. I am lucky to have money from the NHS to directly employ a team of 9 personal assistants who I have selected, and who treat me with respect. I had social care support that enabled me to go to university and have the full uni experience. I now receive funding from a scheme called Access to Work, which funds a PA to support me with physical tasks at work. I’ve had supportive parents, and have pushed to receive the best standards of care available. Much of this support has been free, but I’ve had to fight tooth and nail to get it at times. That’s why there are so many people without access to it.

I’ve enjoyed being able to realise a number of key achievements. Each time, I think “if only I can achieve this one thing before I die”. When I achieve it and realise I’m not dead yet, I can’t just sit around, it’s on to the next thing! I’ve gained a Bachelors, Master and then PhD at university. I’ve sailed to New York. I’ve made a documentary film to raise awareness that a good adult life is possible with Duchenne. I’ve moved out to live independently, and co-founded a new charity to help other adults with Duchenne. I’ve got a job, and then a better job, and finally have a genuine and exciting career path.

There are still things that get me down. Often these are social barriers, like not being able to visit friends or colleagues’ inaccessible houses or use the Tube. But there are also functional limitations, like being unable to play physically with my niece and nephew, or hug my loved ones. The lack of functional ability also means that while I have a lot to offer emotionally and intellectually, physically I an intimate relationship is more difficult (although as I’ve recently discovered, not impossible!). I wonder how many people even think about sex and relationships when they see me. I often feel that I’m viewed as some kind of asexual being. I’m not – I’m gay, I still have a sex drive, and I’m in a loving relationship with my boyfriend.

I know I’m different. My experience and perspective on life is very different from most men. In some ways this is positive, as I’ve learnt to be a confident self-advocate and unexpected opportunities have opened up. But I’m also a bit of a social outcast, facing access barriers to engage fully in society, and feel like my view as a disabled man isn’t important to anyone in power. I can’t change many of these things, and I certainly can’t change being different. All I can do is make the most of what I have to steer the course I choose, and hope that others can do the same.

Thank you to Jon for allowing Duchenne UK to share his blog. Jon is the CEO of Pathfinders Neuromuscular Alliance. 

Published on 7 February 2017

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