Simon
Can I ask you a personal question? I think, for someone who, like me, has an invisible disability, it’s the sense of being seen and known that is really important: that moment where you don’t have to amplify your pain or your disability, or explain yourself, or justify your existence. What would be moments in your life where other people, or perhaps even God, has made you feel seen and understood?
Charlotte
That’s a really difficult Simon Hall.
Simon
Well, I raised it because I suspect why a lot of the people were coming to those sessions that you did with the Leeds Church Institute was because of that need; that you would facilitate that.
Charlotte
Yes. Times I have felt very seen and understood is with our friend Lydia, who is at Revive and has had ME for 35, or probably more, years now. For example, I said something simple in the church WhatsApp chat that was just sort of like, “ohh difficult day this, so don’t mind me if I’m a bit rubbish”. And Lydia came in and just posted a whole bunch of information about ME/CFS, and how difficult it is to live with all of the different things that I might be dealing with at that time. And having somebody else tell other people what I might be going through, and how they could help, was incredible.
Another time she defended me. We do a thing at our church called Sentness, where somebody tells their story and then we send them out into the world with our prayers and blessings – telling them good things about themselves. I did that and afterwards somebody emailed me and copied Lydia in. Now I’d said “I don’t like my illness. I don’t like it. I know I’m meant to come to terms with it. But you know, I haven’t.” I spoke about the pain that a lot of theological focus at the time was about how God can teach you such amazing lessons through hardship, and I think I said something like: “I’m really good at learning. If it’s about learning a lesson, I’ve learned it now, and maybe could I move on from this module into a module of health please? Because I’m sick every day. I’m in pain every day. Sometimes I really hate it and I don’t want it. I want to be positive, but I’m not. I just want it to go away.” Somebody wrote, and copied us both in, and said one of the worst things possible: “But don’t you think you have learned things that you couldn’t have learned otherwise, and so its worth being ill?” Lydia came to my defence and just said “That’s not OK. It’s not OK. It may be true. Charlotte may have learned amazing things through this, but that doesn’t mean that God caused her illness or that it’s a gift from God. That sort of language is not OK”.
When we did the group with Leeds Church Institute we found that our disability group always ran long because people wanted to tell their stories and be heard. They valued the place where someone heard the story and said ‘that shouldn’t have happened’ rather than trying to make it nice or telling them to consider the grand scheme of things. We also didn’t try to make the disabled people feel bad for being hurt by ignorance. Often when you bring it up someone says “but don’t you think they were trying hard, and I know they said the awful theological thing, but they just wanted to reassure you that God loves you because God loves disabled people.”
Yes they were trying to be nice, but it still really hurts when I tell you my pain and you tell me that I should interpret it theologically. What’s funny is its often non-disabled people that need to say ‘Jesus loves me’ out loud. That is about their reassurance, not mine. They feel they need a reason for my disability.
Yeah, I know Jesus loves me. And I’m also in pain. Both of these things are true. I maintain them every day. I just needed to say it out loud and be heard.
So it’s been important to be seen fully like that.
We had a few people in the position where you are, Simon. It’s very difficult if the position you have had in a community is of a leadership type space, however vague. It’s very hard to tell people that you’re struggling because you don’t want them to take your work away from you, and I think disabled people feel like that more than others. That’s not just in church though. I think it’s really hard because I want people to know that I’ve had a hard week. I also still want you to trust me with the things that I am good at. And I know a lot of people won’t, you know, if I say I’ve not come to terms with this. They might say “well why should we listen to you then? If you haven’t overcome?”
I felt like I couldn’t possibly talk about disability until I’d solved it.
*
We’re now listening to the voices of disabled people, but for a long time, particularly with chronic illness, the only books that people ever gave me were where someone had come through the end of it, and now they were looking back on it and saying all these magical, wise things that they’ve learned. But I wasn’t there. I’m in the middle of it. And also with my illness, and like yours Simon, it’s not going to go away. So apart from a miracle, this is my life forever, coming to terms with that is a very different thing to having an acute but fightable illness. Remission is not really a thing. All disabilities and illnesses have unique ways of experiencing them – acquired disability is different from being born with a disability and the challenges are myriad and varied for each.
What is incredibly valuable is having people who understand and when you say “This is shit” say ‘yes it is’ rather than try to fix your experience so their theology isn’t damaged.
We’ve also got some really good books: At the Gates by Naomi Jacobs and Emily Richardson. Fabulous book. There’s a book called My body is not a prayer request by Amy Kenny.
to be continued…
Do you have any comments or questions? You can contact us here: hello@northumbrian.org
