If you have never needed things to be accessible, you probably think of this as things like ramps or disabled toilets. Once you start booking accessible hotel rooms or public transport, you soon realise that ‘accessible’ is not a case of ‘one size fits all’ but more like, ‘how long is a piece of string?’
When you think about it, it makes sense that we are all individuals, therefore we all have different needs. However, when it comes to providing accessible facilities, it’s a case of putting in things that will meet the needs of the most people possible. I have a colleague who is partially sighted and walks with a white stick. His needs are very different to mine as a wheelchair user but our employer needs to make sure that things are accessible for both of us, not to mention a bunch of people with hidden disabilities who I haven’t met yet. It’s a complex issue.
In the 25 years I’ve had MS, my needs have changed considerably. To begin with, the main problem was fatigue. So there wasn’t really anything that could be done, other than changing the amount I worked and ultimately changing my job. When I was out and about, I couldn’t walk too far without getting tired, so the main thing I needed was carefully placed seats, but it wasn’t bad enough to start using a mobility scooter, I thought – although once I started using one, I wished I’d done it years before.
I got my first scooter about 10 years ago and soon discovered where I could and couldn’t go. Suddenly I could get about so much more easily than I had been able to in years. Days out became a possibility again. I started going to actual shops to do my shopping. I went miles and miles without thinking about it. But pavements aren’t as good as they should be and my main frustration involves finding dropped kerbs to get on and off. It’s quite common to be able to get onto the pavement but then discover that there’s no way off it. Now I’m using a rear-wheel-drive wheelchair and the issue is the camber – a lot of pavements slope towards the road, often quite sharply, so for a lot of wheelchairs it’s hard to stop yourself sliding off them. It can be quite dangerous and I’ve ended up in the road more than once.
Mobility scooters are quite large and so they are fine for supermarkets and modern shopping centres, but you can’t always get into shops. You soon realise how much stuff gets put into the aisles, preventing you from getting where you need to be. So whilst a scooter is good for many things, they are cumbersome and you often need to abandon them somewhere – outside cafes, is a common one – and make your own way in. I never tried taking one on a plane, mainly because I didn’t trust the baggage handlers – but eventually I bought one that could go off-road and that I could take camping. It gave me a level of independence that was invaluable and meant that I could do things that I hadn’t been able to do for years.
A couple of years ago, I got very ill with what was probably pancreatitis. I say this because I ended up in hospital with it a year later and realised that it felt the same. Anyway, during this first bout, I could hardly move because I was in such pain. I tried going to the shop on my scooter but I was actually in too much pain to sit up and drive it. So I bought my first wheelchair – an ultralight carbon electric chair that I would be able to use for travel when I eventually got better. I had been wanting to avoid it for as long as possible because it felt like a whole new level of defeat, but I couldn’t have been more wrong. It has brought me so much freedom and so much independence that I haven’t had for years and years. It’s given me a whole new lease of life.
A wheelchair can get where mobility scooters can’t. You can get into cafes and shops, for a start, not to mention meetings and workplaces. It’s a seat that’s always available so it’s fantastic for anything that people are standing around talking. I often say, “Wow, it’s a seat that I can take wherever I need it!” because it’s still a novelty. I think I still instinctively consider whether I would be able to walk far enough or stand for long enough to do many activities and the answer is no – but now I don’t need to worry about it. An ultralight electric wheelchair (mine weighs less than 15kg) can be folded up and put in the boot of a car or can be left in a hallway, out of the way. Any self-respecting taxi driver can pick it up, as can many of my friends and family. I have a hoist in the boot of my car so I don’t need to lift it, but I no longer need to take my car every time so that I can use my scooter. We can just lift it into the back of someone else’s car and go out for the day, which has given me loads more flexibility.
In subsequent blogs, I will talk about some of the specific challenges I have faced with using public transport and staying in hotels, and I’ll talk about how I’ve been able to travel the world with my trusty wheelchair. Far from taking all the options away, it’s opened doors that I never expected would be possible. I’ll tell you why Premier Inns are the bane of my existence and which places I love because of how accessible they are. I’ll also tell you how I learnt to use ChatGPT to plan accessible travel by weighing up all the options and telling me what works best. And no doubt, I’ll have a good rant about disabled toilets that aren’t big enough for a wheelchair, and accessible rooms in non-accessible hotels. The reality of living with ‘range anxiety’ (fear that the battery will run out) and weather that renders a wheelchair unsafe. Hopefully, I’ll give you some useful life hacks and tell you how to avoid some of the pitfalls I’ve found myself in. So buckle up, and get ready to learn a whole lot about accessibility that you’ve probably never even considered before.