Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

SMA & Me – Ross’ Story

A man with brown hair sitting in a powered wheelchair in a house

For Spinal Muscular Atrophy (SMA) awareness month we asked some of our members about living with their condition – Ross tells us about learning to drive, his education, opportunities and the challenges he has faced along the way!

I’m Ross. I’m 42 and have SMA Type II.

Throughout life I’ve faced many challenges because of my disability. The first notable one that I overcame as a young adult was getting Work Experience at 15. The store manager at the local co-op thought I was a health and safety hazard. I proved him wrong and mailed a Saturday job three days into work experience.

Other challenges have been learning to drive. Not the learning but Motability lost my paperwork at 17 and I had to start the process again at 19. It took me until 20 to get a car and pass my test.

Climbing the career ladder has been hard and I took two sideways moves to go forward. But the last few years I’ve continued to progress through promotions steadily. The change for me was accepting I needed a support worker to enable me to work harder, longer and travel without worrying about logistics and bathroom visits.

I guess the biggest challenge I’m yet to overcome is finding a lady who wants to put up with me for the foreseeable future. Ideas on a postcard?

In terms of opportunities in life none of them have come on a plate. I’ve had to work hard to earn them. To get a good job I went to Uni so I could apply for graduate programmes. To get a job I applied to a few organisations and had to work through assessment centres. To progress in my career I’ve had to work hard, prove my worth and deliver.

I have built a network though which does help open some doors. This applies in and out of work. Building relationships is the key to success. I have good rapport with my wheelchair provider lead to being asked to work with them on product development.

In terms of fun stuff I’ve had opportunities to travel the globe but it’s because I have a career which provides the affordability to do so. Nobody gives me a free holiday… except for my dad when I was younger.

Recently I’ve been offered a opportunity which might lead to a change of career over time. My lived experience of disability, pragmatism and business acumen saw a charity approach me to start helping make the world a better place for disabled people. I’ve been working with them for a few years voluntarily but recently the time needed and the impact I want to make means a part time paid role is in the pipeline. This opportunity arose because initially I reached out, shared a problem and gave an opportunity to them to discuss wider. I’ll share more when I can.

I’ve achieved lots in life. I’ve had a 20 year career, I’ve seen the world, I get to follow my football team home, away in Europe. I’ve been a games-maker and London 2012. I can drive a car and I live independently in my own home which I recently converted and extended to meet my disability needs. There are other things I’d like to achieve as mentioned already, but on top of that I’d like to live abroad for a period of time and see parts of the world I’ve not seen. My moto is that there is plenty of time to sleep when your dead and you only live once. If you want anything in this world only you can really make it happen.

Enjoyed Ross’ Story? Then check out Nina’s Story in the SMA & Me series! – If you would like to share your story please get in touch with adam@pathfindersalliance.org.uk!
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