Welcome to our Social Model Starters, 15 minute (or so...) bite-sized podcasts led by our Social Model... & More Festival curator Caroline Mawer. 

In the first episode, Caroline chats with Jan Grue, as they deep dive into the grief, stigma and - lots of! - invisible work associated with disability while life develops and changes.

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About Jan Grue

Jan Grue was born in 1981 in Oslo. The author of a wide-ranging body of work in fiction, nonfiction, children’s books, and academic literature, he is also Professor of Qualitative Research at the University of Oslo. I Live a Life Like Yours was published in Norway in 2018 and has been hailed as a major milestone in Norwegian non-fiction. It is the first Norwegian non-fiction book to be nominated for the Nordic Council’s Literature Prize in 50 years.

Website: https://jangrue.no/

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Transcript

Caroline

So welcome to the third of the Theatre Deli ‘Social Model Starters’. I'm Caroline Mawer. I'm curator for the Social Model and More Festival will be peaking in two weeks of workshops and newly commissioned Theatre in London and Sheffield in November.

And my guest today is Jan Grue. He's a professor of sociology at Oslo University. I wanted to interview Jan after I read his splendid book. I Live a Life Like Yours. He shares that he was given the wrong diagnosis, age three, and his parents were told he had a bleak future. Please read his exciting book to find out how actually he's thrived in all sorts of truly impressive ways. We're going to talk about today is some ideas Jan shared in his book about grief and stigma.

I think they're really important, but let's go back for a minute and start at the beginning. The medical model says that doctors are going to fix us and they don't. Well, the social model says society should change to fit around us, but it hasn't. We need more, or maybe different or it's complicated. So at Theatre Deli, we started by listening to what disabled creatives thought. You can check out the huge range of what you said on our website from. ‘I love the social model’ to ‘F**K the social model’. We've used your ideas to guide our callouts and we got so many great responses. We just can't include them all very sadly.

So these starters are trying to make sure we don't miss some of the big issues. They’re only 15 minutes to make them easy to fit in your day. So let's go.

I'm Caroline. I'm a skinny white woman aged 60 with scruffy short hair and big purple glasses. And now Jan is why we're here. Hi, Jan. Thank you so much for taking part. Could you describe yourself, please?

Jan 

I'll do my best, I think. Skinny white man. Early forties would be would be the short version.

Caroline

Okay, so we've only had…we've only got 15 minutes, so we've had to agree some priorities. Talk about. Of course, there's plenty more good stuff from Jan. So after this, please check out some links to his work and ideas. Which are going to be underneath this posting here.

So now I'm going to probably start. Can you remember, Jan, when you first heard about the social model, was it a useful concept for you? Has it ever worked in any useful way for you?

Jan

Hmm. Yeah. No, I think my my story is quite unusual in some ways because I'm… I work in disability research. It's one of the things I do at university and I'm a second generation disability researcher. So my father is a sociologist who started working on disability. Well, shortly after I was born.

And so one of the things that happened was that when we went to the UK for our summer holidays, one year we stopped by to visit a colleague of my father, who I only much later realized was Mike Oliver, one of, of course, the fathers of the social model. So I don't know what the exact moment was, but I do know that the ideas that constitute the social model, I did hear about them from a relatively young age. And so that that sort of sense of disability as a political issue, that really something I grew up with.

So from from really early on and then I started as a PhD fellow in my mid-twenties and started using it as a as a conceptual tool, as a way to study disability for myself in my academic life.

Caroline

Thank you. Very excited to meet Mike Oliver, but not even know who he was.

So in your book you wrote about stigma and shame, and how shame follows from both the person who's ashamed and society's so-called normal people, both thinking that the shame the disabled person is not how they ought to be.

And you wrote: ‘even if you camouflage or suppress it, shame can't be got rid of by actions. And you wrote: ‘It is this shame I would like to scrutinize and cast off’. And so please explain more.

How's that going?

How is that happening?

Is that working?

Jan

Yeah. I mean, the book that we're talking about, I wrote that over the course of ten years, I would say a lot of the things that I talk about in the book are things I end up processing as I wrote it. But I think I mean, we started with the social model. And one of the interesting things I think is that I knew all of these things about disability as a form of exclusion, oppression and so on from early on.

And still, I mean, those emotional responses were just too strong in me. And of course, the social model has evolved over the years, but I find it interesting that it took such a long time for it to be able to accommodate and sort of handle all of the emotional aspects of this disablement and disability exclusion.

I mean, people like Harold Thomas, of course, wrote extensively on this and the way that disabled ism is part of exclusion and oppression. But for me, bringing those two things together, seeing the sort of the big social structures, the political structures and in some way trying to tell or understand, rather my own story took a very long time. The shame and a sense of stigma was one of the things that was hard for me to deal with, even as I saw very clearly sort of the economic the political side to things.

But shame is so much more difficult to to bring into view, I think, because it's so much more deeply internalized in many, many times.

Caroline

So I'm just saying that's really interesting.

So in some ways you would think that you've got that…you're the ideal person for this to be easy for you. You've got your family history for you, you really clever in terms of, you know, you're a professor now, but still it's personally difficult with the stigma and the shame within that.

So I'm going to come back to my question about you said that you were trying to scrutinize and cast this off. Have you managed to succeed that? And please give us some hints about how you might have done that.

Jan

Yeah, I mean, I…really it's a very difficult question to answer because, I mean, I'm pretty much as established as you can be with a tenured post at the university, a family and so on. And still these situations crop up every week. I would say just these social encounters where I feel unwelcome because I am unwelcome because of, I would say, a combination of physical factors, the fact that the world is not wheelchair accessible and I'm a wheelchair user.

And then from that brute fact arises, all of these very complicated social encounters where another person can act as though this is our shared problem, something we should resolve together. My problem, something I should deal with, or even give me a sense that I am the problem.

So it's still very interesting to me how these things could play out in so many different ways. I mean, the world being what it is and being so slow to change in terms of the built environment and so on, whereas all of these social encounters can be so fluid and surprising.

If I can tell just a very short story right now that there's construction outside my building. And so the pathway that I usually drive along in my way through is blocked that I discovered yesterday. And then I had a very interesting talk with the foreman of the one of the companies working on the construction who wanted to let me know that he felt that this was a problem. He'd been trying to fix it. All the people wouldn't let him fix it. We had this sort of micro exchange and then of course, he told me that his son was in the wheelchair. He saw the world that way. You knew that what the problem was. And so I spent a few minutes trying to figure out why you wanted to tell me this. Why? Why do you want to let me know that you see the problem the same way I do? And of course, he was looking for some sense of solidarity in the moment to let me know that we may in a very different ways, way be part of something, some kind of a community.

Caroline

You think it's solidarity because when people tell me that they know something because their aunts got some diagnosis that I've got, I just think that that's not solidarity at all. That’s just kind of saying

I don't feel that as solidarity, myself.

Jan

No. I think in that particular moment it was, in that he was working to actually to resolve the problem, to get that physical barrier moved. In that sense, I respect it when people just want to, as you say, create the sort of space for their own emotions.

That's different.

Caroline

Exactly. Yeah. So, yeah, that's really helpful.

I mean, I think your point about the three methods of it's kind of: our problem. Your problem? My problem. When people are coming at it. But many people often think about this is your problem, you, you problematic person, isn't it.

Jan

Yeah no that's… it's very easy to think that way. It's very easy to internalize that way of thinking because that, that that is very often how you are treated if not only by, I mean of course you can be treated that way by other people. That happens a lot. But it's embedded in institutions and in institutional ways of thinking.

I mean, those are... my last book, which is not yet out in English, is on Invisible Work, which is a concept book borrowed from feminism, of course, from feminist sociology, the unacknowledged work that women have always done carework, housework and so on. And I think that's very true of disability as well.

There's so much invisible work that you have to do in order to have even a chance at doing a job, being in a relationship, caring for others and so on. And that work will continue to be imposed upon you making the problem yours in so many everyday situations.

Caroline

And it's ridiculous, isn't it?

So here I am, disabled, I'm tired and I apparently have got spare time to help other people understand what's going on and help them go through their own personal feelings about it and often put on weight. And I'm like, and I really try hard not to do the invisible work, but it is really hard work not to do the invisible work. It's hard not to do the invisible work, and it's hard to do.

Jan

Well, exactly, exactly that.

Caroline

So my next question is about grief. You wrote about grief, a grief that you described as bitter and mingled with rage towards the world that does not want to make space for me.

And you wrote very movingly of how experience turns words into plants with deep roots. And it hurts to pull them up. Can you say more about that?

Jan

Yeah, I mean, it's the thing that I was trying to write about there is complicated because, as you say, the diagnosis I was first given at the age of three was for a progressive muscular disease. And so I expected - I lived with the expectation from about the age of ten or 12 that I would become much weaker over time.

That didn't happen. And I sort of I was re-diagnosed and I also lived without a proper diagnosis for about ten years, which forced me both to trust my own, my sense of my own body, and in a very different way than before. But it also left me with a kind of a void of what might I have done differently had I not expected a rapidly progressing disease.

So there were a lot of complicated emotions bound up in that. But I think just the one of the really important ones was that the sense of loss just by having this life story imposed on me where I was, I was supposed to get steadily worse, where I was supposed to spend my life not doing the things I want to do, so that there's a little bit of a paradox there. But that because I did get to do the things that I wanted to do, but always with this sense of time running short of being on a very, very strict deadline. But I felt that I'd lived much more sparingly perhaps, than I would have done otherwise.

So that’s one side of it. And then the other side, of course, is is the grief for not and not having the body that I was supposed to have and the body that is always alluded to in, well, medical journals diagnosis which of course documents of divergence from from the normal so that there was also this sense of two shadows really my shadow body which was the one that was supposed to get worse and then the shadow body that was never never had an impairment to begin with.

Caroline 

And as you get older, you will get worse just because everyone gets older and I've got multiples, I've got multiple progressive diagnoses and people said to me, So when are you going get better? And I'm like, Well, no, that's more invisible work, isn't it? Sort of like continuing to sort of like keep them happy about the fact or whatever. There is some imposing that happens about. So of course you're going to get better and you have to say I'm not, which is hard work to say, Or you.... It's all more invisible work, isn't it?

Jan

Yeah.

I mean, it's strange how disabilities, it's often, in many context represented in such a static way. I mean, it's something that happens to the children that makes them objects of charity and that there's very little talk about how these children will grow up. They will enter the adult world and not enough talk about disability as just a fact of the ninth course. It's something that isn't static. It's something that changes every year as you move into different life stages.

Being a wheelchair-using father has been and continues to be a transformative experience for me in so many ways. I mean, my son is now seven. I'm being the parent of a school child. It's so very different from being the parent of a smaller child simply because he's moved into a very different environment where his his friends, his classmates, they have different questions for me. They react to me in different ways than smaller children did. And so I'm changing with that as well. It just continues to evolve. That was, I think, more surprising to me then than it should have been.

Caroline

That's so interesting and I like the: ‘more surprising than it should have been’. So you should have worked out beforehand. And so that, I think that's another the invisible work that goes on is like, you should be working out what's happening when you're busy except minute to minute stuff, you know?

Jan

Yeah, but it speaks also to the the absence of visible disabled people, right? And especially of visible disabled people doing normal everyday things in family situations and so on. It's the absence of role models to some extent I've had some of course. I mean, I've not been entirely without role models, but fewer than I should have.

Caroline

I think my last question, and we've kind of…we're going to run over time and I think we should let squeeze it in. My question is about you wrote about how: ‘I believe that the world is infinitely stronger than me and I still attempt to bend it to my will through deliberate hard work. I look the fractures, the hairline, glimmers of light coming through’.

And how is that going?

Jan

Well, it's it's ongoing, isn't it? I mean, I'm right now I'm planning a research stay in California and been there before. And I know that among many other things, it will come down to Will it be possible for me to have someone over there build a ramp for me at the exact incline it needs to be? Will I be able to work out these fractions off of a meter from halfway across the globe in time for me to be able to go there and know that I have a place to live? I mean, these are the headline cracks, but I'm still trying my best.

Caroline

Jan, thank you so much for sharing some really difficult issues. I have a feeling that you are going to work hairline glimmers of light because you turning up in California and looking for somewhere to live. I read you of doing that right before and you did it once, so I'm really hoping. Fingers crossed. So that's going to be slightly less traumatic and difficult than  I read about the first time round.

But look, thank you so much for sharing your difficult issues and your goodness and happiness around that. Is there anything else you'd like to say?

Jan

Thank you for the conversation, Caroline.

Thank you so much.

Caroline

And remember to please check out Professor Grue's work. There are some links that we're going to put underneath.

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The Social Model…& More Festival 

Taking place across Theatre Deli's Sheffield and London venues in November 2023, the festival, which has been curated by artist Caroline Mawer, explores new perspectives on disability and the relationship between disabled people and the world around them.

Find out more about The Social Model…& More Festival here.