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Travelling with a disability – How I travelled the world with Spinal Muscular Atrophy

I have spinal muscular atrophy (SMA) and I have travelled the world.Travelling with a disability is possible and here’s how I conquered Europe and the United States with a few simple travel preparations.   

A few months shy of my eighteenth birthday, I had my last-ever appointment at the children’s hospital. It was an auspicious occasion, taking that leap into adulthood, but also a sad one. After all, I was farewelling a bevy of influential, life-saving doctors.

One such doctor was the ‘laughing doc’, so christened because of her booming laugh. However, in contrast to her joyful moniker, she often delivered harsh, uncomfortable truths, and the truth that she dealt that day was that I might never get to travel overseas.

I’d travelled interstate numerous times, but the pressures of a long-haul flight, and what it would do my body, didn’t bode well. I have Spinal Muscular Atrophy, a condition that makes me reliant on a powerchair, and fatigue a danger to my health. Travel would prove tricky.

For years, I resigned myself to the fact it might not happen, all the while watching mates traverse the globe. But two years ago, I was selected to represent Australia in powerchair football in the States. Suffice to say, I had to make it happen—and I did.

Cut forward to the present and I’ve since travelled to New York, Paris, Amsterdam, Auckland, and, one month ago, Hamburg and a little seaside town in Denmark. (Best place in the world.) I never thought this would be possible, based on my doctor’s cautious words when I was 17. 

The truth is, travel is becoming more and more feasible. The laughing doc was right to be cautious, but you never know what’s possible unless you push the boundaries. Here’s what I’ve learned…

5 tips to make travelling with a disability less stressful

Although I do love a bit of spontaneity (case in point: booking a Europe trip only two weeks prior to going), planning goes a long way to ensuring a trip goes smoothly.

Seek advice

I’m regularly on Facebook groups like ‘Accessible Travel Club’, where people swap stories and solutions. With these networks, you can find accessible hotels, attractions or medical hire, endorsed by other people with disabilities. This is potentially the most reassuring thing, knowing that a peer has been there, done that. Did you know there’s accessible canal tours in Amsterdam!? 

Buy travel insurance

Before you jump on the plane, you’ll first have to do a few things at home, including travel insurance. (The joys!) Importantly, please note that many places won’t insure your disability, but don’t be disheartened. Shop around and persist, as it takes next to no time to seek quotes online. 

See your doctor and plan your medication 

Depending on your disability, it’s also helpful to get your doctor to sign off on your travel. For instance, my doctor writes a short letter stating my condition and suitability to fly. My sleep and thoracic physician is heavily involved – they can also do a series of tests to ease concerns and make recommendations around flying.

Let the airline know ahead of time

Be sure to notify the airline of your needs when you book. Most have a direct number to ring. They’ll want to know if you need assistance with transfers and, if you’re a powerchair user, your wheelchair’s dimensions and battery type. If in doubt, ring your wheelchair manufacturer or look it up online. While you’re at it, check how to disconnect your chair prior to flying, as many airlines require this.

Be prepared at the airport – Get to the airport early.

It sounds like the most obvious thing, but get to the airport when check-in opens for your flight, as it makes life so much easier. Sometimes, despite your best efforts, things will go awry. By being early, flight staff will be able to accommodate any changes much more easily.

Where to next? – This is the only the beginning 

The more I travel, the more I realise how many people with disability have made that trek before me. In turn, all that accumulated knowledge is showing that travel is a very possible thing, in a multitude of different ways.

If you want proof of that, look no further than We Carry Kevan, which chronicles the story of the eponymous Kevan as his mates carry him in a backpack around the world. That’s right, backpacking in a backpack. Brilliant.

For me, I’m craving a month in Argentina or Ireland. Two very different places, but I know that, whichever I choose, both will be possible. Where’s your next adventure?

Follow my adventures on Instagram @tristrampeters

Tristram Peters, a writer and editor, writes on behalf ofClickability, an Australian disability service directory and ILC Grant Recipient that features reviews from people who actually use the services. You can navigate the site to find your perfect disability provider or even join their growing community of reviewers. Visit the website clickability.com.au

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