Simon

Can I ask you a question about your your faith? You’ve grown up with parents who, in different ways, are very committed to their Christian faith and trying to live it out. As you grew up, therefore, you were in and around churches and church people, although it was probably slightly different to a lot of people’s church experience. I have a really vivid memory of talking to you, probably around late primary school age, and you asking me about heaven. A child’s idea of heaven, and my first thought was I need to correct that bad theology, but I managed to let it go! I remember you saying will I have straight legs in heaven? Because I don’t want to have straight legs because these are my legs and I want to be me which showed me an incredible sense of self. A strong sense of who you were. At least at that time, a kind of defiance, resistance to a conventional idea of what a normal person is. So there’s an insight there into how you saw yourself as a person in relationship with God and how that worked out.

Rachel

I mean, bless that child. I don’t remember saying that, but how cute. How cool that I was in a place that young where I saw it as a good thing. I think the faith aspect of it is something that I still wrestle with and I’m sure lots of people, as you say Dad, pray for the best. And when people tell you that your child’s gonna be disabled there is, I’m sure, a moment of panic there. I think this thing around healing, and people praying for healing and people praying for me to get better, is hard and hurtful. But then at the same time, you know the people who did that, I loved that circle of adults around me and I trusted that they loved me. I don’t feel as hurt by that as I maybe did when I was younger, but it just sent a direct message of, ‘We would like you to change and we think this thing that’s happened to you is so bad that we’re gonna will God to get rid of it.’

I read a book last year called Poor Little Sick Girls by Ione Gamble and she’s got Crohn’s Disease and she writes so eloquently about well-being culture, this ‘health is wealth’ culture that we have now and how the image of a disabled person, or a chronically ill person, or a sick person, is the direct visualisation of what able bodied people, ‘healthy’ people, do not want to be. People are afraid of what it would be like to live like us and I grew up with that fear. The thought of living with a disability is so unpleasant to other people and they can’t face up to it. People find it really hard to say, ‘I would not want to live like you. I love running. I love being physical.’  I think the faith element of it just made that harder because it was like, Oh, ‘you have a God in heaven who loves you and you’re made in his image, but also not really.’ I didn’t really know how to square that. I didn’t really know how to make sense of God being all powerful, but he made a mistake with me. I don’t really quite understand how that happened. 

I remember going to one of the big Christian festivals regularly as kid. They always did this big question box and they asked people to write questions down. And every year that we were there without fail, I would write down, ‘Why did God make me disabled?’ And they never once answered that question. I don’t know the answer to that question. I remember being in certain Christian environments as a teenager and sort of feeling that I’d had this amazing epiphany of, ‘Ohh, I know why God made me disabled. So I can be an example for other people.’ I don’t know if I believe that so much anymore.  It’s hard for me to make sense of, ‘If God loves me, why is he giving me hardship?’ If God loves me, I don’t know how to make sense of that and I don’t want to live every day as a perfect example of sainthood. I’m just so grateful that I have a body that moves at all, but I do have days where it’s just really annoying and I would really rather not live like this.

Craig

So when people wouldn’t answer your question, does that communicate to you that you’re not part of the group?

Rachel

You know, it was one of those situations where they’re gonna pick a question that they can make sense of, because what do you say to a kid who exists entirely differently to you? And there was part of me that was proud of that. There was part of me that was like,’I am different and on certain days I do think that’s amazing and I think that’s – whatever – and I don’t want to change.’

But I had massive surgery when I was 16 and my primary motive for doing that was to have straight legs. At 24, thank God I had that surgery because now I’m in less pain and I can do more. And I might be able to carry a baby. But when I was 16, I just wanted to get rid of it. And I remember the day after the operation being like, ‘Ohh that was a really stupid reason to turn my life upside down.’ In that recovery from that operation, the thing that I had grappled with most was that I put myself in this position because I wanted to look different. It was a vanity thing. I didn’t want to look disabled anymore because I’m 16 and I wanted people to fancy me and I wanted to fit in. 

And I remember just that shocking awareness that, of course, it didn’t work.  I’m still gonna be disabled. They can’t eradicate that. I wish I could sit here and go, ‘I was thinking about my health, and I was thinking about me being able to walk as an adult.’ But I wasn’t, you know? As you say, Craig, it’s very complicated. It’s a very complicated relationship to have with your body. Because some days you’re fine. You know, it’s not impacting me very much today. And the other day, I literally cried because I couldn’t do the washing. I could not bend up and down, over and over again, to take things out of the washing machine and this is my job in my house. My partner and I have divided up what we do, and I can’t do my job and I didn’t feel capable and I just had to say, I can’t do it today. And you know, there are days where it’s entirely confronting.

Craig

Yeah, I know exactly what you mean. Every day is different. Thank you for being honest. 

to be continued…

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