Martyn Sibley on travel: PAs, powerchairs and plenty of planning
28 year old entrepreneur, Martyn Sibley, uses an electric wheelchair and requires 24 hour care from a personal assistant. Continuing our guest blog series on hobbies, he talks us through the epic planning process that goes into feeding his passion for world travel.
I have spinal muscular atrophy, a disability which means I cannot walk, shower by myself or lift something heavier than a book. My hobby, passion and dreams tend to all revolve around one thing - travel. An unexpected interest for someone in my position, perhaps!
I am lucky enough to have travelled far and wide over the years, first with my family and more recently, independently. I have been to the US, Mexico, Singapore, Australia and much of Western Europe. I don't know if it's disability related but I hate the cold, and love sunny beaches.
Beyond climate, I like the challenge of travelling far away, meeting new people, seeing new places, experiencing new cultures and getting a fresh perspective on the world. I often find travel de-stresses me, allows me to think more clearly and often provokes me into becoming more creative.
I've been going abroad since I was too young to remember, so it is hard to say when the travel bug first set in, or when the strategies needed to make it happen were learnt. But even with many family holidays under my belt, planning an independent overseas trip as an adult has been a significant learning process.
Despite all of the amazing things travel offers, there are so many barriers to overcome. Here's how I manage it:
The first holiday I took without my family was to Australia. I began planning 6 months in advance. Straight away, I had to ensure that the airline was ok with my wheelchair. I suggest always calling them immediately after booking.
You will need to inform the airline of any assistance you will require at the airport, getting onto the plane and during the flight. They will often ask for the weight and dimensions of the chair too.
Unfortunately passengers are not allowed to take their own wheelchairs on to the plain. This means they have to go in the hold and, unfortunately, they are too often damaged.
I would urge you to be forthright, explaining exactly how your wheelchair should be handled, but sometimes damage will occur anyway. In that case, it's about finding a quick fix and claiming costs back from the airlines. Some people take their older, spare chair, to protect their main wheels.
The next step was to find two personal assistants (PAs) to accompany me. I also had to arrange their social care budget.
When planning the Australia holiday, a social worker was able to organise funds to pay my PA's travel and holiday expenses. This was six years ago and was possible because I was living at home with my family at the time. The additional money made available for this trip was allocated as an alternative to the more traditional residential respite break in the UK. Respite would probably not have been quite so fun or refreshing, and would also have been more expensive for the taxpayer. Instead, my two chosen assistants had their costs covered, they shared the workload and we all had a trip of a lifetime.
In my case, this was a one-off arrangement. For most trips, I offer PAs their usual wage, financed, as always, by my direct payments. But the deal is that the PA usually has to fund their own travel and living expenses. So for longer, more expensive trips, it works better if I employ a friend, who is happy to do the care for a one-off period on a sort of working holiday basis.
The final step in planning my Australia trip was to make sure that all hotels and activities were accessible, that planned internal transfers could cater for my needs and that I could hire hoists in 3 separate destinations. I used the services of a travel agent. To achieve this with certainty however, I also did my own online searches and contacted the potential equipment, taxi and tour providers directly.
The key to travelling with a disability is to identify your desired destination first, forgeting all possible limitations. Then look at your needs, find the appropriate solutions, add up all costs and only begin booking once you are confident everything is ok.
It may take longer to save up and to find the solutions, but believe me it is worth the wait.
I am yet to organise a trip to a developing country, something I hope to rectify next year. No doubt this will present a whole new set of disability travel challenges.
Watch a video of Martyn's travel planning in action, as he and his friends take a US road trip. Martyn writes about his life and work at his personal blog and co-edits the online disability lifestyle magazine , Disability Horizons. Follow Martyn on Twitter @martynsibley