Maxwell enjoys travelling, even with all the challenges he faces getting on a plane. He writes about how he overcomes these barriers to freedom.
My name is Maxwell and I suffer from a rare muscle-wasting condition known as spinal muscular atrophy. Throughout my life, I have been able to adapt experiences, tasks and everyday life in a way that means I can participate in them. This has given me a creative and determined mindset to overcome my additional daily challenges. Determining what you want and going after it is essential to achieving your goals.
Of course, you are not born with this mindset. Speaking for myself and many others living with a rare condition, life isn't always easy or fair. You learn from countless failed trips or times your friends did something that was not accessible for you to do in that way. But 'that way' is critical because you can do it your way. For me, that's about adapting and planning.
One of my favourite things is to travel abroad to explore the world. It can be highly challenging, with many things that can go wrong, from airlines damaging mobility aids like my hoist or wheelchair, to risky manual transfers. There is much to consider to ensure I minimise the danger of being hurt or stranded in a foreign country. One of my biggest worries is my portable hoist, which transfers me out of my wheelchair, which is essential when travelling as it's the safe way of doing so. After religiously calling airlines and confirming this as luggage, we, without fail, get caught up in an hour-long debate about whether it is allowed on the plane. Not only is this extremely stressful, but it's also usually totally undignifying. This, paired with the previously mentioned airlines' reputation for breaking mobility aids, pares for an unpleasant couple of hours.
However, this doesn't stop me from enjoying a holiday and I don't think it should stop anyone with a rare disability. Two critical steps in overcoming these risks are planning and knowing your way around regulations and laws. Airlines are required to take two pieces of medical equipment on board for free and any additional requests within reason. The airline restrictions may vary, so it is essential to call customer support and pre-book the equipment. This is so it can be safely stowed in the plane's hold and transported safely. All batteries should be sealed inside of the wheelchair or for a hoist inside a carry case.
Inside of the EU and other specific countries, you have a right to special assistance who will help you get onto the plane. There can be massive loopholes so you need to be careful. For example, one airline refused to transport my hoist on my recent flight to Portugal due to its weight of 50 kg. Due to health and safety, they cannot carry things heavier than 32 kg, yet it was confirmed and booked onto the flight. This meant coming to an agreed decision, we would carry it up to the plane.
From my experience, it is about learning to challenge what is being said when they turn around and say you can't get onto the plane.
Although it's not ideal, encounters are much shorter when you know what to say—allowing me to get on holiday and not give in.
I've been very fortunate to go to university, but there have been additional steps to allow me to attend. Fortunately, access in Cambridge is quite adequate. However, my first step before considering going was to employ a carer. This was a must and was problematic due to a national carer shortage. But I was determined to do it so I could attend university.
I used an agency to advertise for me to employ someone on time. I had three months to find an applicant and train them successfully. The quality of the advert is the main reason for successfully getting someone to apply. It involved selling your life in a dramatically exciting, but authentic way. After a few applicants, I managed to find a good fit for the first person I wanted in my team. I'm now following my passion for business at university and couldn't have done it without learning about valuable life skills. One of them is to keep going even under time constraints as it works out or other opportunities arise.
Life isn't as simple as whether it's fair or not. I firmly believe that your reality is as fair as you make it to be. There is obviously inequality and discrimination— many of us face it daily. But on a personal level, it's a mindset I've acquired to always see past the fact that I've adapted it by myself and to enjoy it in the moment.