How would you describe your home?

It’s very colourful, and a little bit tacky in the best possible way. I’ve always had that kind of style. But since becoming a wheelchair user, I feel like my personal style has got even brighter than it was before. I think there’s a certain aspect of me that’s: I’m not a sad and grey story.
I am bright and vibrant, and there is more to me than my disability. It runs through everything I do and impacts everything, but often people see me in the chair and they automatically see what they perceive as a challenge, as something sad.

So my style and dress sense is really bright, it’s like pleasing my inner six-year-old, because I feel like a giant toddler most of the time.

What adaptations have you made to personalise your home?

When we moved in here, I wasn’t using a wheelchair; I was using crutches, so we chose certain things around that. Then I started using a wheelchair, so about seven months after that we realised that we needed to change a few things.

The thing with accessibility is that it is often really functional, in an ugly way – it’s not aesthetically pleasing. It’s always very grey, very medical. Or it’s incredibly expensive. You have the “disability price tag,” where as soon as something is aimed at a disabled person, then the price tag is huge.
So we’ve had to sometimes do things on a budget, and to try to make it my own.
For example, I’ve got this big metal ramp that I put down to be able to get out into the garden, and I thought it was really gross, that it doesn’t match my aesthetic at all. So, I bought some skateboard tape in pink leopard print: very powerful. I covered the whole ramp in it, and now it’s grippy and looks great, it looks cool.

I very much believe in universal accessibility. I feel like everyone’s home should accommodate them, whether you’ve got babies living there or whether it’s seeing you through to old age, because it’s likely if you live long enough, everybody’s going to become disabled at some point.

Do you feel your life at home is accurately represented in the media?

I think representation plays a huge part in disability. It is still just viewed in such an outdated way; the small bit of representation we see in film or TV is usually seen through very narrow lenses. So, it’s usually, ‘Oh that disabled person overcame their disability, aren’t they so inspiring?’ Or, ‘how tragic: look at their struggle’. Most people see disability through a medical lens, so it’s about what’s wrong with you, what’s your condition? Whereas for me, I don’t see that my condition disables me. What disables me is the size of barriers.

Representation is huge because we just don’t get enough. We don’t get enough of disabled people getting to tell their own stories in the way that they would like to.
There’s no room for just the boring disabled people with their regular lives doing their regular things.

What was it like to have Annie Leibovitz take your portrait?

I was terrified; I just couldn’t get my head around that. Annie was coming to our house? It was like, ‘this can’t be happening’, I was so nervous.
But she came in and she just put everybody at ease, and she was so humble. She even got my eldest to put his arm around his younger brother, which never happens!