Simon

You trained as a social worker, which gives you a language to describe social circumstances. I wonder if you can talk about how that helped you understand yourself in society, because I would observe that the way you started to talk about yourself and present yourself changed, and I don’t know whether that was about growing up, or whether it was actually about what you were studying at the time.

Rachel

Can you give me an example?

Simon

Well, I think you began to say I want people, when I come into the room, to know who I am, I want to present myself in a way that they understand who I am and it’s not something to be ashamed of, it’s not something to be hidden.

Rachel

Studying that degree was lots and lots of things, but it was talking about the hidden parts of life, right? People live in families where child abuse takes place and there’s domestic abuse in people’s relationships, or they have a parent that’s struggling with alcohol and nobody talks about that. Kids are told not to talk about it and kids are told, when the social worker comes, don’t speak to them about it. When I was working as a social worker I felt that all of those things were exacerbated because people feel ashamed and people feel that they can’t talk about it. They can’t tell the truth of their lived experience. 

Helping people tell the truth is entirely different than learning about it. Going into people’s homes and going, ‘I actually really need to ask you about that. And we need to have a conversation about the way you treat your child or we need to have a conversation about what you do in the community.’ Or whatever. Just learning to have those conversations daily that I was afraid to have, just lent itself to me going, ‘I don’t talk about [disability] enough’, and I think that’s when I started to have those conversations with you and Mum about whether you think we talked about it enough.  Do I talk to my friends about this enough because my friends are very, ‘Oh, it’s just Rachel’? and she might need us to carry a bag or whatever. And for a while, I was like, ‘Oh, that’s so great that they just know what I need. And we don’t have to talk about it.’ But it’s a very, very big part of my personality and my life that I just had a sense of yearning for my friends to know more about it. 

I think it goes back to what I was saying earlier about experience of disability being an entirely individual, sometimes quite isolating experience, because I don’t feel that I have a disabled community around me. It’s not the same as a woman talking to another woman about walking home late at night and every single one of my friends can go, ‘Oh yeah, I felt like that before’. I don’t have that sense of being known by other people – when it comes to people understanding what it’s like to live with cerebral palsy – and I don’t have a person in my life that can turn around and go, ‘I totally, totally get it’, because even my friend from high school that has cerebral palsy, who’s the only person I know personally that has this disability, we can’t always understand each other. 

So I think the degree lent itself to me going, ‘I would like to talk about this more.’  It’s not in the forefront of my personality, but it’s actually the thing that introduces me to a room full of people and in moments of anxiety I’ve said to my friend, pulling up to a party, ‘Did you tell them?’, and my friends are like, ‘What do you mean?’  ‘Did you tell them that I’m disabled because we’re gonna get in there and everybody’s gonna look.’ I’m gonna know that people are confused. I’ve been in situations where people think I’m drunk and I’m not. I’m just completely sober. And I just have to say, ‘No, I have a disability.’ 

I’ve started a new job a couple of weeks ago and it’s really interesting going back into high school environments and seeing people go, ‘There’s something different about her,’ and none of the kids have been brave enough to ask me. I don’t mind people asking, but nobody’s brave enough to draw attention to something that they’re not quite sure about, and start that conversation. I think it’s my bravery as well. Saying it is uncomfortable, but I would like to have a conversation with my parents. I would like to speak to my siblings about how that impacted their childhood. I would like to speak to my friends and say,  ‘This is how I feel when you say let’s go for a walk in the park. That’s how I feel afterwards. I’m happy to do it, but this is how it makes me feel.’ I think yeah, it’s just that willingness to go, ‘This is a bit of an unknown territory, but I’ve been carrying this on my own for so long and I’m now ready. Here’s the load because you’re my friends. You’re people that I do life with, you’re my family. You’re my support network, whatever. I don’t wanna carry it all by myself anymore.’

Craig

That’s interesting. It feels like part of what you said, certainly towards the beginning of that answer, was about empowerment. Asking your friends to tell new people you are disabled helps pre-prepare people and that means you’re not going to get that ‘shocked face’ experience. Have you ever been in the situation where you have told somebody in advance?

Rachel

Do you know that I actually can’t say that I have, or at least not in a way that’s coming to memory, because then it’s that thing of, well, I don’t want to look like I’m drawing attention to myself by mentioning it. I can’t say I have lots of memories of going to friends, ‘Just tell them before I get there please, or you know, just mention it.’ I don’t do that so much anymore because I feel like I can take the reins. I remember saying to my Mum when were going to some fancy do, ‘did you tell people?’ and she said, ‘What do you mean?’, because she’s my mum and she doesn’t see it. But it’s that balance of, yes, I’m your kid and yes, I need you to see that I might need other people to know that about me in advance. But now as I’ve got older, I feel like I don’t need my friends to do that for me.

Craig

It’s a real challenge, isn’t it? But then I think if I were to ask my friends to tell people in advance, would it look as if they were making excuses for me? I understand everything you’re saying and I can’t know if it will make things easier or harder. Maybe it would be easier for children, but not necessarily for adults. I have certainly been in situations where it does help though.

Rachel

There was a time where I did find it helpful and I don’t know now if I would ask, because now it would almost feel harder that people know in advance because then I have lost control over what they know about me. I think what makes people knowing I’m disabled, before they’ve met me, difficult is that they can then make assumptions about what I must be like, how I’ll behave for example. Everyone can think of an archetypal disabled character that just makes noises. And it’s funny, like sometimes there’s a real relief when people see that I can talk. Mums have crossed the road with their children before when I’ve walked down the street because people see physical disability and oftentimes they think it is a mental disability, or people think I’m drunk and might start behaving erratically or, you know, whatever connotations we wanna put on the word disability.

That is what people are afraid of, unpredictable behaviour and it’s really hard to be in a room and have to manage all of those connotations and expectations all at once. 

Craig

Yeah, because the brain operates by pattern matching doesn’t it? So often people react before they can think. The two different reaction systems we have within our bodies, where our brain takes a fraction of a second longer to kick in and we’ve reacted before we can decide how to react.

I’ve had all the same experiences as you with people avoiding me, or clearly being afraid of me. I find the worst experience of all to be when people underestimate me, or when they assume I won’t be able to make an intelligent contribution to a conversation or debate. That really hurts because I’ve honed and developed a part of me that does not disable me from playing a full part in society, and still I’m marginalised.

In the next series of posts we interview Charlotte, a biblical scholar, and church leader.

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