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Flying high with muscular dystrophy

With the summer holidays finally here, many of us will be travelling abroad to bask in warmer weather or to do some sightseeing. However, while for some travelling overseas might be easy, for others like me levels of accessibility can differ from place to place.

Ben in a wheelchair smiling, the Burj Khalifa is in the background.

I’m Ben, I am 17 years old and currently progressing through my sixth form studies in the UK. I have been diagnosed with Ullrich congenital muscular dystrophy from the age of four. Some of the earlier signs included me falling over – a lot – and not being able to run, like my friends could. As I then grew older, the physical differences between my peers and I continued to grow. As everyone around me started picking up new sports and physical activities, I spent my days gaming and soon found a passion for travelling.

A move to Dubai

As a result of my dad starting a new role in Dubai, we realised we would need to look into living there.

“My living with a muscle wasting condition meant we would have to prepare numerous arrangements for me to get on with day-to-day life, just like in the UK.”

However, my family and I were pleasantly surprised by how easy these things were in Dubai; it was completely accessible wherever I went, so it was very rarely an issue. Even in places where we didn’t expect them to be, like small establishments, they were accessible! There were ramps at the small establishments and tourist hotspots such as malls, while other hotspots like the Dubai mall were accessible via lifts. However, what was difficult was adapting our new home for wheelchair access. This was neither easy nor cheap as most of the equipment we needed was specialised. For example, we needed a completely accessible bedroom on the ground floor.

Life in Dubai

“Having a muscle wasting condition has always impacted my life, especially moving to a foreign country.”

In the beginning access arrangements were quite difficult as, at the time, the city had a very low population of people living with muscle wasting conditions, which meant there was less awareness around these conditions than in the UK. Despite this, people were welcoming and the arrangements that I always needed in the UK were easy to set up, such as modifying living spaces to be accessible. I was also able to visit various exciting places such as the Burj Khalifa (which is as tall as people say), and going on a desert safari, which I highly recommend anyone should do at least once! And, of course, the Legoland in Dubai. However, while it may seem like there were never any major issues in my move to Dubai, it should be noted that there is certainly a level of stress that comes with proactively planning for the arrangements I need, for both myself and my family, especially when moving to a brand new environment.

Returning to the UK

“Moving back to the UK after four years and starting secondary school was a personal challenge.”

It was a new school, and everyone else seemed to know each other, and it was quite difficult due to me already feeling like an outsider. It certainly took me longer to establish a good social circle on my return to the UK than it did when I moved out to Dubai. I think this is because, as I said, they all already knew each other and had formed their social circles. Despite this, there was an upside, due to my connection with Muscular Dystrophy UK; they made it easier to find the things I needed and, being four years older, I now needed more advanced arrangements in place, such as a hoist for the bathroom. However, the challenge of finding accessible places was still prominent. But with time, I found that most establishments had become more accessible over the time I’d spent in Dubai, with the inclusion of ramps for me to get inside establishments.

Looking ahead…

As I am entering my second and last year of sixth form college, with the prospect of university next year, I’m looking forward to travelling as I grow older and gaining more independence. I’m also planning on a year abroad, either in South Korea or Canada, as part of my university course. Once I have completed my degree, my goal is to go back to Dubai once again to teach film studies at university. In the meantime, and due to it currently being the summer holidays, we have huge plans to travel; at the end of this week, at the time of writing, I will be heading to the Maldives and Sri Lanka, which should take me up until my second year of sixth form begins, which I am extremely excited for as well!

Speak to us

If you need advice on travelling abroad, adapting your home or education speak to us. Call us on 0800 652 6352 Monday to Thursday 10am to 2pm. Or email info@musculardystrophyuk.org.

Support for young people

We offer WhatsApp groups for people with muscular dystrophy, ages 14 and up to connect with each other. And a one-on-one peer support scheme for teens aged 14–17 with muscle-wasting conditions. Here support is provided by older mentors, typically aged 18–30.

Online information

We have up-to-date webpages with advice on adapting your home and education for those with muscle-wasting conditions.

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