Craig

That’s really interesting, Rachel. Because the choice you made was, that by not wanting to be part of a minority group, you chose to be an even smaller minority – one. By your own choice. I’m wondering why this might have been because I had a very similar background to yours and made similar choices. I went to a mainstream school and everything else but, in later life it was only when I talked to other disabled people with a very similar disability to mine, when I was in my late 40s, that I began to experience some resonance and ask the questions I wish I had been able to ask when I was younger. Where do you think your inner resilience came from?

Rachel

Because the experience of disability is so vast, so you know, I remember mum taking me to a sports day in year seven or something, and every other person there was significantly more disabled than me. There were people in wheelchairs, there were people that couldn’t speak. There were people that were being peg fed. There was somebody there with no limbs and they could still do cartwheels and stuff. And I remember the person saying, ‘You’re in the wrong room.’ I have an experience of passing as an able bodied person in some circumstances. So the example that I always use is like, if I was sat down in a bar, nobody would know that I was any different from other people sat there. But if I walked in, they would be able to notice that there was something different about me. So I do have, in certain circumstances, the privilege of passing as able bodied. The disability that I have doesn’t affect my speech, it doesn’t affect my cognitive ability. But some people that have cerebral palsy, it does impact their ability to speak and their ability to process things.

I think I’ve found the experience of having cerebral palsy quite isolating because there was one girl in my school that had cerebral palsy, but she has hemiplegia, so one arm and one leg, and her sight is also quite severely impacted, so she has an entirely different experience of life and of disability to me. I’ve always understood that I’ve had a feeling of like, I’ve got one foot in the disabled camp, because I do technically have a disability, but I have one foot sort of in the able bodied camp because I can walk around. I’m not confined to a wheelchair so I didn’t feel that I resonated with those children that were sat around that table in their wheelchairs, because that was not my experience either. That’s a really hard thing to face. So I hear what you’re saying about getting to 40 and going, ‘It’s only now that I am meeting people that I can speak to because I don’t feel that I knew anybody with the same experience of disability as me.’ So it’s an incredibly isolating thing. And I think it was that feeling of, ‘Well, we wouldn’t understand each other anyway’, which was the assumption that I made as an 11 year old. I’m sure if I sat down with those people now, there would be other commonalities that I wouldn’t have seen at the time, but it was just like, well, I’m not like them. You know, the wheelchair is, unfortunately, a worldwide symbol of disability, and I didn’t want to be associated with that. There’s been a few times in my life I’ve had to use one and I’ve really had to get past what it represents to the rest of the world. 

I don’t know about resilience. I think in an interesting way, I think it was resistance. Yes, it was a strong choice to go into a school with no other disabled children, but that’s what my primary school experience had been. So that wasn’t exactly new to me to be the only disabled kid there. There was a girl with Down’s Syndrome in high school, but again, we have entirely different experiences and I couldn’t relate to her and she couldn’t relate to me.

Craig

I understand that completely. You used the word resistance, which I found really interesting because it definitely chimes with my experience. How has your experience of your own limitations changed over the years? When we’re very young the world is no larger than the distance between us and our mother’s breast, then it gradually gets larger, together with a growing awareness of our limitations. How would you say your awareness has changed over time?

Rachel

Yeah, it has. I think when I was younger, I was very aware that there were things that I couldn’t do – I was very against trying anything in the sport arena for example. I didn’t really do PE, I didn’t really get involved. As I’ve got older, I’ve gone, ‘Oh well, I know how to swim’, so I like going wild swimming and at the start of this year I went to an aerial class and I was like, ‘OK, this is gonna be a heck of a lot harder for me than everybody else here.’ But luckily I had a great instructor who said, we’ll just adapt it. It was hard but I still have this feeling of, ‘It’s not as bad as that person on Instagram who can’t speak and she has to use a machine to speak to her friends and she’s in a wheelchair.’ 

It’s very hard and I think I’ve said this to everybody in my life at some point, but like you know, I’m in pain every day and I could choose to say every single day to my friends, my partner, my parents, ‘I’m in pain today, it hurts today, doing the washing is difficult today,’ and I learned from a very young age that that doesn’t help anybody because they can’t help me. How awful will it have been for my parents for me to say, ‘I’m in pain right now Dad,’ and they go, ‘Yeah, we can’t help you’. 

I think as I’ve got older I’m willing to try things more than I was when I was younger and sometimes it doesn’t work. I don’t think I’ll ever be able to go climbing, for example. But I went to Ethiopia when I was 17 with school. And part of this trip was to do a 10K. And the SENCO of all people, was like, ‘Rach, I don’t know if you should apply for that.’ And just because he said that I was like, ‘Well, I’m gonna do it.’ And you know I’d never done the 10K before, obviously, and I didn’t know if I’d be able to, but just because he’d told me that I shouldn’t, I went and did it. And I think I still have that. Just to be able to say ‘you put a limit on me and I’ve decided that I don’t like that’, and I didn’t like the fact that the member of staff in school who was supposed to support me was like, ‘No, maybe you shouldn’t do that.’ And I did do it. And of course I didn’t run it, but I walked it and I finished it. Couldn’t move the next day, but it was worth it. Just be able to go back to school and say, ‘I finished that 10K, sir. I did.’

to be continued…

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