Tell us a little bit about yourself.
My name is Matthew, I’m 34 and live in Dorset, England. I have Becker Muscular Dystrophy and I’m a full time powered wheelchair user.
I’m a big fan of cars and motorsport, I have been to many car shows, museums and motorsport events over the years, including the British GP and British Touring Car Championship races. I’m a lover of football and support AFC Bournemouth, where I am a season ticket holder, I also play for their powerchair football team in the MDUK Premiership. I love 80’s music, enjoy going out for meals, trips to the cinema and family days out.
We also have a family dog, a bearded collie called Maddie, we’ve trained her to pick the items up that I’ve dropped on the floor, dropping things seems to be a speciality of mine.
What is your experience of life as a disabled person?
Life as a disabled person can be interesting at times, it can be up and down from one day to the next. I do feel life can be easier as a child with a disability than an adult, things tend to stop when you hit 16. They certainly did for me. I stopped getting physio which has had a detrimental effect in my adult life, contractures of the knees in particular causing me issues, I can barely straighten my legs now. You also get less help towards the funding of essential equipment and care costs. Over the last few years, I’ve had numerous issues with my local council regarding care costs and what I’m able to contribute towards them. When you’re disabled you have to fight for everything.
The thing I’ve found the hardest about being disabled is a lack of relationship opportunities, I have tried online dating sites but never seem to get anywhere. As soon as you tell them you have a disability they seem to disappear or just want to be friends, I know this isn’t the case for all disabled people though. It’s just difficult when you see other people in happy, loving relationships and you’re struggling to even get a date.
Having a disability can be hard on your mental health, especially if you have a progressive one like myself. When I first started using a wheelchair permanently it was a very difficult thing to accept, it’s an emotional and frustrating time for any disabled person when you can no longer do the things you used to be able to do. I haven’t been able to live the life I had envisioned I’d have before my diagnoses, I don’t have many friends and I do feel socially isolated at times because I can’t go out on my own anymore, however it does make you appreciate more of what you do have in life, life is short and you have to try and live it to the best of your ability.
There’s always something out there you can do, I found powerchair football, which I absolutely love. I have made some new friends and met many inspiring people during the four years I’ve been playing. Being disabled is tough at times but it should never stop you from enjoying life. I can still drive via a specially adapted van, play football, go out with friends and family, I’ve also been to many great accessible places, both here and abroad. There’s still work to be done but it has become easier to live as a disabled person than it used to be.
How would you describe your disability?
When I was 7 years old the school nurse picked up that I walked with a waddle, after seeing a consultant, they diagnosed me with Duchenne Muscular Dystrophy. It was recommended that I should visit the Hammersmith hospital, which at the time was a leading centre for neuromuscular conditions. After a muscle biopsy, they came to a diagnosis that I had Becker Muscular Dystrophy. This is a milder strain of the disease, although I’m at the more severe end of the Becker spectrum.
Muscular Dystrophy is a horrible condition to live with, it’s a muscle wasting disease that mostly effects your arms and legs, but can also cause weakness to the heart and lung muscles. I currently have 50% lung capacity and my heart function is 30%. I was able to walk up until the age of 16 but used to fall over more regularly the older I became, I started to use a powered wheelchair to get around when I was 14. This became full time when at 16 I fell over and broke my leg while at home. Currently there is no cure for MD and most, especially those with Duchenne, rarely live beyond the age of 30.
What is accessibility like where you live?
I live in a small village about 20 minutes from Bournemouth town centre, a place where you might imagine accessibility to be poor. However the majority of the shops are wheelchair accessible with level entrances. There are some shops that are inaccessible due to there being a step, I’m not sure if they have ramps as I’ve never had the need to visit them.
There’s more inaccessible shops in the next town which is frustrating, I’ve had to wait outside a few of them while the person I’m with goes inside. The accessibility is okay in Bournemouth but it’s not the best, this is mostly apparent in the main shopping streets which are hilly with a few of the shops having steps. All newer buildings though have decent access, which you would expect, although the new Odeon cinema has the wheelchair seating at the front, this isn’t progress.
Where is your favourite place for accessibility & why?
A: Well I have a few but my favourite place is a cruise ship. Since I became a full time wheelchair user I find flying an inconvenient means of travelling on holiday, I also have a fear of flying after a bad experience coming back from Dublin once.
It’s so easy for me to get to Southampton, there’s no limit on baggage so you can take all the equipment you need, plus you can access all public areas of the ship. Lifts take you to all levels, ramps allow you to access parts where there are steps and they even have a pool hoist. The accessible cabins have a large wet room and plenty of turning space inside the sleeping area, if you opt for a balcony cabin you can even access this. The only negative is you have to either take your own, or hire a hoist as they don’t have ceiling track ones.
The best place I’ve been to on dry land is probably Chatsworth House. All of the house is accessible to wheelchair users via a lift and the gardens are mostly accessible on flat gravel paths. Some paths are inaccessible due to steep inclines, rough ground or are slippery when it’s wet. Thankfully there are few of these paths and the most suitable ones are marked on the map you’re given. The only negatives are no changing places toilet and scooters aren’t allowed inside the house.
What is one accessibility improvement that you would like to see?
There’s a couple.
Ceiling track hoists installed in more accessible hotel rooms. I believe that there should be at least one room with this provision at every hotel, with only those who need hoisting being able to book it. This would allow more disabled people to go away on breaks as not everyone has or can afford a portable hoist. Dragging one around with you everywhere you go is also a pain, especially if you want to travel by train or coach.
I’d like to see more changing places toilets be installed at tourist attractions, they should also be mandatory at motorway services. These are vital in allowing more disabled people to go out and enjoy themselves, without having to worry about whether they can use the toilet or not.
The final thing is more disabled parking spaces. Since the amount of people eligible for a blue badge has increased, the amount of spaces hasn’t. This is limiting the amount of disabled people who can access the community, if you need the extra space of a disabled bay and they’re all full, you either have to wait around for one to become available, or you have to go back home.