A lot has changed for people with disabilities since the 1950s, when the then seven-year-old Alice Moira was given her first wheelchair – not least the fact that it was made of wood and she couldn’t push it herself. Technology has come on in leaps and bounds, of course, as has society’s understanding of disability, while moves towards flexible working have, in some ways, made things easier. But wheelchair users still face challenges in a world that, so often, has been designed without them in mind. Recent plans to make cuts to disability benefits in the UK have raised concerns that disability rights might be retreating. Thirty years on from the UK’s Disability Discrimination Act becoming law, Moira, now 81, chats to 25-year-old Lochlann O’Higgins about what their experiences of using a wheelchair have had in common – and how they differ.
Do you remember the first time you used a wheelchair?
Lochlann O’Higgins: No, I was two. My parents told me about it, though. I have brittle bone disease, so I used to break my bones a lot and I couldn’t walk. In the hospital, the first time I got in a wheelchair, I apparently just jumped in it and started wheeling up and down the corridor, having the best time of my life because I was able to move around freely for the first time. The nurses and my mum were scared I was going to crash into a wall.
Alice Moira: From the age of four and a half I attended St Margaret’s, Croydon, a boarding school for children with cerebral palsy. I learned to walk at seven in callipers, and there were handrails all over the school, so we could go anywhere. However, I leaned badly to one side, so they eventually decided that I should go in a wheelchair, which was a wooden chair with two wheels at the back. I was really scared of being put in a chair and having to stay in it. I also thought that I’d get labelled as being handicapped, which didn’t suit me at all. I was going to fight the world whether they liked it or not. So for a year, I refused to sit down, even for lessons, and they eventually built me a table with a hole in the middle so I could stand and still do my work.
What were your school years like?
AM: At 10, I got pushed out of school because I’d not learned to read. My dad managed to get somebody in Moorfields eye hospital to have a look at me, and they came to the conclusion that there was something wrong with my eyes, part of my cerebral palsy. My eyes didn’t get steady enough for me to see words continuously until I was 17. By the time I left St Margaret’s my dad, along with some other parents of children with cerebral palsy, had set up the Spastic Society [now known as Scope] which had started to open schools, so I attended those until I was 19.
LOH: I spent my early years in China, where my parents, who are Irish, were working. We came over to the UK, to Staines, when I was eight, and I went to a non-disabled school, which brings its own unique set of difficulties. I spent a lot of time in hospital, which kept me out of school, so I was a bit late to learn how to read. I was always the only one in a wheelchair in my classes. I had really good friends. They always wanted to have a go in my wheelchair.
AM: Yes, mine too – it was perfect for riding down hills, with everybody else on the back!
LOH: In that sense, people were very interested in me – I was unique – but sometimes there were certain things that I couldn’t do, like PE lessons or playing football. That was difficult sometimes. Wheelchairs can’t go everywhere and they can’t do everything. That’s just how it is.
Do you ever get frustrated by that?
AM: Frustration is something that’s always there. But it’s a question of thinking outside the box. For example, Ian, my late husband, and I were both in wheelchairs, and when we went on holiday we would give our helper a camera to take whenever she went where we couldn’t, so that we could see whatever it was.
How have you navigated the workplace as wheelchair users?
LOH: I’m studying for a master’s in software engineering, but before that I did remote work as a freelance web designer. I applied for a few jobs, but I preferred working from home. I find that commuting is a lot of extra stress.
AM: Before I left school, I’d already typed out a list of the things I could do and things I couldn’t do. What I put on top of my list was the ability to solve problems, to talk to people, to understand people. There was nothing very physical in my list. And then it was a question of fitting those things into a job situation. So I decided to become a social worker. I had to get an unqualified social work post before I took on social work training. I made 200 applications and got one answer, and the one answer interviewed me four times because they weren’t sure whether I was capable.
Alice, you now rent from the Habinteg housing association, which was set up by your father and other leading figures at Scope to provide accessible accommodation that was suitable for everyone, including disabled people. How was the experience of finding accessible housing?
AM: I don’t think it’s ever easy. There isn’t enough of it. I know from working as a social worker that there are people in high-rise blocks and flats who had become disabled while living there - they had a stroke, for example – and can’t even get out of their homes. When I got into university, the only condition I was given was to find my own accommodation. Eventually I found somewhere, but it was in Marlow, and outside High Wycombe, where I was studying, by several miles. To begin with, the taxis used up all my grant. So I applied to a local authority, sending them all the taxi receipts for a whole year. They gave me a travel grant, so the problem was solved, but I had to take the risk of writing and hoping that I’d done the right thing. Luckily for me, I landed on my wheels.
LOH: It’s completely different now. We don’t have to keep taxi receipts – you just get sent the money, or there’s something called the Motability scheme which is what I use, letting you lease a car. It just makes life easy. It’s much better in London nowadays, but there are still times when you get to an underground station and there’s no lift or escalator and you find yourself stuck. I couldn’t imagine going to university without accessible accommodation. I studied in Twickenham for my undergraduate degree and they had accessible rooms designed for wheelchair users. It’s come a long way, it sounds like.
AM: I’m glad it has.
LOH: But they only had that accommodation for the first year, so I ended up in the second year having to look for houses with some friends. Our house had steps going in [so we had to install a ramp] and it was really small, which made it difficult to spin around. The kitchen top was too high, so I was sitting there with a knife, chopping things above me. It’s so difficult to find houses at a good price. Sometimes you just have to take what you can get.
Lochlann, you play rugby for the England universities wheelchair team. How has sport helped you?
LOH: I’m a big advocate of getting active – playing basketball, tennis and rugby has helped me find a community. It’s somewhere you can go and relax and be yourself. Early on I started playing table tennis, which was something I could do because you don’t have to be running around. And growing up, when I got back pain, my mum would take me swimming. Getting out of the chair, you just feel so light.
AM: Swimming is brilliant. When I was a teenager, I had a lot of surgery on my legs. They were very sore. So when we went to the sea, my sisters used to drag the wheelchair into the water until it was deep enough for me just to float out.
How have things improved for wheelchair users?
AM: I was 11 before I had a wheelchair I could push myself. There were problems. One was that it had wooden rims, which filled my hands with splinters. Yuck. Now there has been development in wheelchairs for kids, making them more kid-oriented.
LOH: There’s so much technology nowadays which I rely on that helps me get around and interact. For example, I always use Google Maps and I can just search for wheelchair access, or find a lift via the app.
Are you concerned about the proposed cuts to personal independence payments (Pip)?
LOH: It’s not great. It is very difficult still to get Pip and you have to meet a lot of requirements. I didn’t realise I could get this money until I was 17 or 18, and then that took two years just to apply for. I really hope things aren’t starting to go backwards, because over the past five or six years there has been a lot of progress – I see a lot of people getting more money towards chairs, especially in sports communities. If you want to get the actual sports chairs, they’re six, seven thousand pounds, so when I play sports, I play in a sports chair borrowed from my wheelchair rugby club. I’ve noticed that people who do wheelchair sport are often slightly older, and I think that might be because the people who are a bit younger struggle to get access to the money. I know that they’re trying to work on that.
What do you hope to see change for wheelchair users in the future?
LOH: Nowadays you can go online and search “community near me” or “sports clubs near me” so wheelchair users can go out and try sports and make new friends. I think that has improved a lot, and I hope it continues to grow.
AM: I want to see more opportunities for people to try things and not be constantly confronted with: “Well, you have a disability. How can you do this?” Some people will be able to do some things and others not. But that’s no reason to not let people have the opportunity to try.
