The Way We Roll

Ableism doesn’t mean what you think it means.

August 27, 2021 Phil Friend
The Way We Roll
Ableism doesn’t mean what you think it means.
Show Notes Transcript Chapter Markers

Have you noticed a change in how disability is discussed? For example, words like ‘ableism’ and ‘internalised ableism’ are perhaps not mainstream but more commonplace, especially on social media. 

We were thrilled when Professor Fiona Kumari Campbell, Professor of Disability and Ableism Studies, University of Dundee, agreed to come on the show. In an authoritative and entertaining interview, Fiona explains the most dominant use of ‘ableism’ isn’t as intended. Fiona’s concerned it is being used as a sledgehammer, without explanation, and its hostile use creates them and us. Fiona reminds us social theories are explanatory narratives, making sense about the world and a watershed moment for some, but they are theories, the social model isn’t a fact. Fiona suggests being disabled can be a constant state of ambivalence with the negative reminders we frequently receive having a cumulative impact. Fiona encourages us to have dialogue, to listen and above all else, to read more. 

It’s a treat to listen, think and absorb Fiona’s thinking, her concerns about what is happening, what’s been lost along with what we can do and what we need to think about in the future. 

And some reading and watching recommendations for you, Geoff returns with his Cultural Corner. This month it’s Mare of Easttown and The Shipping News. 

Biography

Professor Fiona Kumari Campbell, is Professor of Disability and Ableism Studies in the School of Education & Social Work, University of Dundee, Fiona is an interdisciplinary scholar-activist and not a traditional academic, being biracial, disabled, LGBT and from a religious minority background. Fiona has written extensively on issues related to disability – a philosophy & sociology of ableism, disability in Sri Lanka, law, biotechnology and is recognised as a world leader in scholarship around studies in ableism.

Further information and links

Papers and publications on Academia Educ

Contours of Ableism - Professor Fiona Kumari Campbell, Palgrave Macmillan, 2009

Internalised Ableism: The Tyranny Within from Contours of Ableism (also Internalised Oppression)

United Nations Human Rights video - What is Ableism? 

People and topics Fiona makes reference to 

Sayonara CP / Goodbye CP 

Japanese film featuring people with Cerebral Palsy 1972

Theory as a Liberatory Practice “I saw in theory…a location for healing” 

bell hooks, Glorian Jean Watkins 

Articulating a sociology of desire exceeding the normative shadows 

by James Overboe

"I refuse to be an accountant of atrocity."  Randall Kennedy  

General 

BBC article on micro-agressions and ableist language

NCCJ Handy primer with disability essentials 

Thank you to <

Announcer  0:00  
Welcome to The Way We Roll with Simon Minty and Phil Friend.

Simon Minty  0:15  
Welcome to The Way We Roll with me Simon Minty.

Phil Friend  0:18  
And me Phil Friend,

Simon Minty  0:19  
Anyone who takes an interest in equality and diversity knows that the language and the words that we use don't remain the same.

Phil Friend  0:27  
And perhaps we should give you a warning that we will use a few old words seen as possibly offensive to some in this show. For example, once upon a time, I'm now known as a wheelchair user, but I was called a cripple. 

Simon Minty  0:38  
And I was handicapped for the first 10 years of my life, and then that changed to disabled or disabled person. And that's pretty much stuck up until more recently.

Phil Friend  0:48  
So let's take a slightly wider view, what we and many of you will have used and may have experienced is something called disability discrimination. Indeed, there was an act in 95 in the UK called the Disability Discrimination Act, which aimed to ensure equal and fair treatment of disabled people

Simon Minty  1:05  
But the times are changing though a word that is almost common parlance amongst politically active and younger disabled people and in academia is ableism. We've mentioned it a few times in previous show,s but we really wanted to dig deeper, and get to understand it more and really explore it, 

Phil Friend  1:23  
Which is where our guest for today comes in. We are totally delighted to have Professor Fiona a Kumari Campbell, who is Professor of Disability and Ableism Studies in the School of Education and Social Work at the University of Dundee and she's with us. 

Fiona Kumari Campbell  1:40  
Hi thanks for that. I'm really excited to have this conversation with you guys.

Phil Friend  1:46  
Fabulous. 

Simon Minty  1:46  
Are we okay,calling you Fiona I thought we should call you professor or something.

Fiona Kumari Campbell  1:49  
No, no, Fiona is fine.  I'm surprised you put the "A" in I must remove that "A" otherwise it gets too long.

Simon Minty  1:57  
Phil did a beautiful job of that I was really impressed. And because I write the script, I get him to do the hard bits and give me the easy bits. So that was it was well done, Phil. And now I'm going to go straight in you have the word ableism. In your job title. You've , written extensively about this as a topic. We will go in depth but just could you summarize what it means in a sentence?

Fiona Kumari Campbell  2:19  
(Laughter) Ah, well, Ableism is a family of ideas. It's kind of like an ethos about abledness. What do we mean by the abled body? What do we mean by the perfected body or the ideal body? You know, the the productive body? So that's really what some what it's about.

Phil Friend  2:45  
So Fiona, I mean, in your biography, or your biog gets says that you're a non traditional academic, being biracial, disabled, LGBTQ plus and from a religious minority background. So for us and our listeners, can you unpack that a little for us? Well, I mean, what whatever you want to share with us that you're comfortable sharing?

Fiona Kumari Campbell  3:05  
Yeah, it looks like so things that are really important because we we are embodied people and were influenced and affected by our you know, our life experiences  things don't just drop down from heaven. Although that would be quite nice sometimes when you're working on a book deadline. So yeah, so I The other reason why I put that information in my biography was to, I guess, challenge the view that, you know, academics are in ivory towers are from privileged backgrounds. So I have a Sri Lankan mother and a Scottish father who, who married in Australia, so that's why I've got the Australian accent. And they married actually, under the white Australia policy. Some of you might not be familiar with that. But up until 1972, people of non European backgrounds were not allowed to enter Australia or become citizens. So I think my mother was quite a pioneer in in that respect. So I've guess, sometimes, I'm described as a person in between two cultures. And I think that's been a theme through throughout my life of kind of being raised in the West, on Western values, but at the same time, very much shaped and colored by a South Asian experience, particularly related to Buddhism. And an outlook really so. So I think that that's, you know, really important. In terms of disabilities. Again, I don't know whether it's such an issue in the UK, but in Australia, most people who study disability or you know, get jobs in universities or indeed, you know, senior positions and disability agencies are people who tend not to identify as disabled. So and so that's very important. There's very few disabled people who actually get through undergraduate courses and universities, let alone go on to other things. So. So in 1981, and I think, you know, we have this kind of spiritual thing about kind of auspicious moments. So in 1981, in the International  Year of Disabled People I became a C six on seven incomplete quadriplegic. Yay. So, so it was, and so that was the year, but I what I didn't know back then. And it only came out later with some diagnostic testing is that I'm also autistic and have discaclia as well. So I have, you know, have a number of disabilities that that are there so yeah. So in terms of a non traditional path, and this is where I think it's important. My first job was in a sheltered workshop, putting lids on on bottles, knives and forks in airline bags back in the days when you could have real knives and forks. And there was a culture of low expectation. So, so for me, I was told quite explicitly, you can't go to university, I just started University before I became unwell. You can't go to university, the sheltered workshops are best. They had booked a bed in a nursing home, I think you call them care home here a quadriplegic center. And that was it. So it was that tyranny of low expectation. I lasted about two weeks in the sheltered workshop, gave them a finger, I'm told , I'm not allowed to swear here. So I gave them the finger. and ended up actually, my first volunteer job was at a organization called the Disability Resources Center, which was run by and for disabled people. And I think that's really interesting, particularly for the young ones who might be listening. I mean, we've kind of almost regressed in some ways, the idea of organizations that provide services that do research with all the staff, all the members are disabled is is powerful, but it's still quite unique. So I got it, I was exposed to a lot of disabled people, people older than myself that were doing different things. And they kind of trained me up and yeah, so

Simon Minty  7:17  
Fiona it is a remarkable intro, there's, I have a quick one liner, and then a bigger question. You've reminded me of a story that we used to say that there was people working in the sheltered workshops, they would have to put these knives and forks in little things and seal them, but because it was the most miserable job ever, they would just have a little spit and they would spit in them before they sealed them just to get their own back now, wasn't you before you gave him the finger? Was it?

Fiona Kumari Campbell  7:43  
(Laughter) No to be honest, I was and I think again, it's in all seriousness, I was quite submissive. And anytime I was near institutional authority, or went near hospitals, I was very quiet and, and timid. I mean, you you kind of that kind of idea of low expectations, it kind of like sinks, you know, sinks into your, your mind, I think the big change if I may say before you go into ableism the big change for me, and it was a historical moment. Again, one of those was auspicious occasions, I got, I got a project and I was paid $35,000 and this is 1981 right 1982 a hell of a lot of money, like you know, and and it was by an insurance company, and it was to distribute a book called Into the Streets, to people living in asylums and nursing homes. And that's what I did. I took this book because it was pre internet, obviously, to people who had been incarcerated, about their options of leaving and meeting with these people. And that was the real turning point. To go into these settings and and you know, again, their historical memory, I think many people have no understanding about what it was really like to be in institutional environments and what that did for you.

Fiona your given, given the complexity of who you are. You've disability seems to be the primary driver. So race and gender and sexual orientation, sexuality, those sorts of things. clearly important to you, but they're not the thing that we've got to know you about.

I can I say to be honest, um, you know, I've had a love hate relationship with disability. Genuinely, the disability rights movement, you know, is like any social movement is factionalized with bloody, you know, egotists and power mongers and, you know, politics and things. So I would dip in and out of that. And the same with disability studies I've always had as my second preoccupation to keep life interesting is to look at non Western knowledges. Okay, so looking at other ways of viewing things, and what's increasingly happening in the last few years is those two areas have come together to help shape my ideas. And also to make sure that when we're talking about thinking about disability it is truly a global perspective, not just a Western perspective.

Phil Friend  10:11  
Yes. Important. Yeah.

Simon Minty  10:13  
So ableism I remember someone phoning me about 8/10 years ago saying, Have you heard this? What do you think? And I said, it will catch on, but it's going to be a while yet. Then in the last year or two, I've seen it a lot on social media media, particularly International, younger people using it. So and this is ableism. Disabled isn't very good friend, who's become disabled is doing a lot of academic study, quoted it to me. And I said, what does it mean to you? And there was this big pause. And I thought, a lot of people are using this, but they don't actually know what it means. Now, I had to do a talk this week. And they said, Oh, you must do ableism and microaggressions oh goodness. Okay. So if I distill it, it's disability discrimination. But you've already alluded to No, it's about the body its about productive, tell me, you were around at the source of it. And how do you understand that?

Fiona Kumari Campbell  11:05  
Okay, the first thing that I should say is, you know, what, I've been writing about this, in fact, I've been banging on about this in the last 12 months about the misuse of the concept of ableism, or the term because it gets used now as like a kind of sledge hammer. Right? That it and like, like racism? Yeah. So it gets kind of like, well, you're ablist you are , whoa, you know, and, um,  and people don't, actually say what it means. The other thing, and I'll unpack this a bit, the other thing is, there is a an interpretation of ableism, which I disagree with, and that's actually totally off the mark. And that's the one, unfortunately, that I think is pretty dominant these days, I think, particularly with the you mentioned about young people on social media, I think the influence of the way Americans undertake young Americans and undertake their activism is kind of running the show here. So let's take it let's take it apart then. So one of the things that I started with, in the early days, and it was accidental, by the way, my definition of ableism, which I came up with in 2001, which was about that idea of the kind of perfect idealized body, you know, so I'm giving you a summary here, and that anything that can't measure up to that, or is diminished, becomes disabled, that's kind of like the kind of paraphrased version, right, and I only restricted to disability. But that was just a mere footnote, you know, in an article about the way in which disabled people are represented, and in the court system, right. So that's my, my background at that was writing about disability in court. So you know, you're either a hero or a sufferer, you know, that sort of thing. So it kind of, it was no, never my intention to kind of go down the line of ableism. But one of the things that I guess got me onto that was, I thought, well hang on a minute, you know, when we talk about research, and when we talk about policy, most of the spotlight is on disability, right? And I kept thinking about, well, you know, in all social systems, throughout history, there's always been this notion of what it means to be the ideal citizen, you think about the Roman Empire, you know, the idealized body, you know, the kind of social roles and the kinds of things that are valued, right, and again, and parallel to that, then are all the kind of misfits, or what I now call disposable peoples who don't, who don't measure up to that, right. So the other thing that influenced me, and I'm sorry, this, I'm trying to compact this. So it's not to long Belle Hawkes, who's an African American academic, she wrote a paper, I don't know, about 20 years ago now. And she said, and again, I'm paraphrasing it and the fact that I remember it's really interesting. She said, in theory, I found a place of healing theory helped me make sense of my lived experience. Right? So theory, social theory is really an explanatory narrative. It's, it's, it's a, it's an it's a conversation about why is it so why do these things happen? Right? And people come up with all sorts of, you know, explanations, the social model of disability, as I was saying the other day, and you know, people can misinterpret this, the social model of disability is not a fact. Right? The social model of disability is, is a theory, right? A theory about how disability is produced. Why is there inequality and how does it relate to the economy, right? And it we know and, I mean, you guys are UK folks. So we know it comes out from an era that had a heavily Marxist influence. Right. And this kind of means in relation to the means of production, right? Where there's an oppressor and the oppressed. Now why I'm mentioning this is we'll come back to this because two of my gripes about ableism. On one hand it like it was a slow burner, your right to project that was a slow burner, not much. You know, when I my book, Contours of Ableism came out in 2009. It was the first book, there hasn't been that many other books. And you know, and and in the UK, there were some people who are quite grumpy about that, because I said, well, we're using the word disablism. You know, what's this other new kid on the block kind of thing? And, you know, I kind of responded to that. And maybe that could be a separate question later, but maybe,

Hold your horses. So so there wasn't, and then I started. And there wasn't really that much interest, you know, who's this kind of, you know, Australian, you know, I can't think of the word is you know, kind of interloper or whatever, coming in telling us what to do. And, and outside, there is some freedom when you're not in the US, and you're not in the UK, because there's lots of factional brawls about knowledge. And, you know, when you're in the ass end of the world, and the Antipodes, you can kind of do what you want, you know, with out all that fraca. So it's slowly picking up which I was really excited. But the problem is, and this is the bit that I was banging on about. So I'm going to talk to you about two things, right? is one is consistently the word ableism is used without people explaining what they mean. Right? So you've already touched on that, right? So so this is consistent now. It's on social media, but more scaringly or scary. Anyway, more concerningly is an even in academic research articles, you know, someone will just bung in something on ableism use the word ablist all ableism. And don't and they don't explain what it is. Because I my little crack detectors, my little antenna I that comes up, I was really wanting to have a conversation with people about this, you know, there's something a bit scary about talking to yourself all the time. And so anytime I saw, you know, in the Google search, Google Search came up, and ableisms there, I'd kind of say, Okay, what are they gonna say about it? What are they gonna say about it? And nothing, nothing, it was assumed that we all knew what it meant. And, and then people would then basically talk about what its impact was what ableism does, right? But they didn't say what it was, which is kind of like, really, really flawed. I mean, you know, it'd be like talking about a car and saying what a car does without even describing what the car is in the first place? And how do we differentiate between cars and trucks? Do you not? I mean, I know that's a bit of a strange analogy, but we need to kind of do that. But the other, so that's the first area and that's a continual issue, right? And I've got, um, a recent published paper in 2019, I think called precision ableism. Like, this is the stuff that you would teach first year students, if you're going to use a term, define it, you know, and then you're in charge, you're in control of the narrative. and off you go. But this is there's been a lot of resistance with this. The other area that I'm really concerned about, and I think it's an overhang from not just the social model, but this kind of Marxist leftist approach to things is the desire to always find an enemy dada dada that we can push the guns at, right? So in So what we have is we have this discrimination narrative, a number of people describe ableism as a system in favor of able bodied people, right? That's the one you hear variations of, it's the ables they're the problem, and they're out to get us right, and then then system privileges them, right. I guess I look, I'm gonna tame myself I could say it's a load of crap. Yeh well, I've actually just said that there you go. You know, this is ridiculous. ableism affects everybody, right? in different ways, and to different degrees, you know, when a young teenage person who doesn't identify as disabled, like a woman looks in front of the mirror, you know, in the morning and thinks, Oh, god, I'm ugly, or what do I have to do to kind of fix myself up? And, you know, how do I look healthy? When when, you know, a middle of middle age worker in the workplace thinks that look, I'm not keeping up to pace with what's expected of me to do, you know, all these things are ablist ideas, even the idea of the  they called the fountain of youth.

Simon Minty  19:37  
I'm gonna jump in just for a minute. That's that aspirational bit. You start at the beginning of the goddess body, or the Atlas, or whatever it is that we all can't match up to, but it all

Fiona Kumari Campbell  19:48  
Well we can match up and we all want to belong, like human beings, the human condition is you know, even people like myself that are quite reclusive. We do we are social creatures. We want to belong, right? So, James Overbow, many years ago, he's a Canadian disabled scholar. And he used the phrase "normative shadows", right and you can imagine, like the idea of this shadow, and it kind of moves over the top of us. And even if we want to reject what we consider to be popular or normal, or, you know, Posh or whatever, the very fact that we're having to kind of push back on these is we are engaged in in this issue. Right. And Robert McGrew use the idea of compulsory able bodiedness. Right. So I think what for me, when I started looking at, I said, we need to study what ableness means, what does ability mean? What you know, and, and, and, and to put the spotlight instead of looking at the spotlight on disabled people, I'm not saying disabled people are not relevant. And I'll come back to that later. And maybe you can ask me a question about that. (Laughter) But the focusing, but the focus is on this kind of very elusive hard, it's hard, hard area about what does abledness mean? And it changes throughout history, it changes in society, right? And what I am reason why I'm saying this, I'm going to shut up in a minute. So you could ask another follow up. But so one of the things that I've I've said over the years is saying that ableism is not just about disability, it emerged from disability studies from disability activism, right. But actually, ableness in terms of the people who are disposable are refugees or stateless persons, people who are at the lower end of the caste system, and even race, right, so. So in fact, it is a system of hierarchy, a system of differentiation that affects more than disabled people.

Announcer  21:54  
This is The Way We Roll presented by Simon Minty and Phil Friend, you can email us at [email protected], or just search for Minty and Friend on social media. We're on Facebook, Twitter, and LinkedIn.

Simon Minty  22:09  
Thank you, Fiona. For me that was fabulous. I've been waiting to hear something like that for so long. It's untrue. But, Phil.

Phil Friend  22:18  
I mean, likewise, Simon, I think that was I kind of get it, I understand it. And I've been in this game for a long time. And as Simon alluded to the word has begun to get used in very common currency and never defined, I wanted to ask Fiona just around the issue of what makes disabled people different, in many ways, of course, is that they can become it. So you're born into a situation where you've described your own life like, that you were minding your own business, and then you became a quadriplegic. So I'm wondering how ableness works inside somebody who started life as a non disabled person, and then is becomes a disabled person, and how they manage that because I think sometimes the term ableism is defined as an internal, and you've just talked about that, too.

Fiona Kumari Campbell  23:11  
 We're totally saturated. 

Phil Friend  23:13  
Yeah. So I'm wondering, you know, thinking of our listeners, if you've led your life, and then become a disabled person, and now you're trying to reposition yourself in some way, what you're thinking, what your studies have shown you in that kind of area,

Fiona Kumari Campbell  23:29  
Yeah, well, you know, ableism is like the monkey on the back, right? So all of us, every single human being within five minutes of birth, enrolled in a system of ableism. Now, what do I mean by that, that's a huge claim. There's a thing called the app gas score. So within five minutes of a baby being born, right, they are ranked, they're ranked according to particular specifications about what it means to be healthy, right. And from that five minutes onwards, all of us are enrolled in in this system of ableism. And what happens is we internalize it. So in 2005, I did publish an article called Internalized Ableism. And to be honest, um, I was influenced by the writings of critical race theory and black writers talking about how, you know, people of color internalized racism, you know, it's, um, and so, so, the first thing to say about that is, and that's, that's a really cool area for disabled people. Because for people who acquire disabilities, they've just assumed able bodiedness it's, it's like the story. I don't know what your disabilities are, but it's like the story of when you first go out and if you're using a walking stick or a wheelchair, you suddenly see all these people around and you've never seen them before. Or like in my case, I have had a while I still have a child. She's now 20. But I can remember wheeling the pram you know, and suddenly thinking, oh my god, there's all these women with prams around, you know, so you just don't see it because it's not part of your consciousness. Right? So I think the, what happens often when people when people acquire disabilities, not in all cases, they have to deal with your own adjustment. I mean, this is a life changing event for people who acquire disabilities, right? And for some people, it's instant to some people, it's over, you know, a few months if they have, you know, an illness or whatever. And so they have to kind of work on, what does it mean to be a man? What does it mean to be a woman they have to kind of all these values and important qualities in one sense of self, that makes one worthy overturn. So first, what happens is just disintegration. And then there's integration of a re integration of that. And also, this is not just jargon, you know, a monk in a cave experience or the problem about this is. It happens within the social system itself outside like rehabilitation. So for example, in rehabilitation services, I don't know if it happens as much now, but there's been research done, for example, with people about amputate amputations, they've been told to cover their must cover their, their amputated limb or whatever, or conceal, you know, and and, and, you know, the inference, obviously, from that is that, you know, it's to avoid stigma, but then it's, well, there's something you think more maybe there's something wrong about that, do you know what I mean, so. I know. I know. In my day, it was about people in wheelchairs wearing tracksuit pants, it was absolutely discouraged because it was the whole thing about guys predominantly, guys, guys in chairs wearing tracksuit pants, you know, and

Simon Minty  26:50  
There's so much you said a couple of bits I wanted to pick up Phil, post-polio three years old, getting it. I have dwarfism and was born with it. And I'm already I'm feeling guilty of that. You mentioned some of that sort of pecking order weird stuff about getting it, getting it and having it and how long you've had it all those things that we know, exist? You mentioned, internalized ableism. And that is springing up alongside ableism. And also what I always used to something like internalized oppression, we used to use that as a phrase. 

Fiona Kumari Campbell  27:25  
And that was the generic model. Yeah, yeah. 

Simon Minty  27:27  
And but that one is a bit more accurate, the way people are using internalized ableism. It is a sort of comparison thing.

Fiona Kumari Campbell  27:34  
It is and can I say I always say that disability is a state of ambivalence, ambivalence. What do I mean by that? For most of us throughout our lives, and you know, we change as we grow older, and whatever, whatever else is happening to us, is often we hold joy and despair in tension, right? Because, you know, particularly for people who like, I think I've got my shit together about disability these days, you know, but I, I suffer from really, really acute pain, you know, and I'm now starting to have the effects of aging. And you know, being autistic, causes all sorts of dramas, it didn't cause dramas until I moved to the UK. And that's another whole story, you can interview me about that at some stage, the whole cultural overlay. I mean, I just kind of, you know, I was an autistic person, most of my life, I just masked and got on with the business, and then came here and everything kind of collapsed. But I think what it is, what I'm saying is, you know, this idea that you'll just get over it. And I think we need to talk about depression, ableism kills ableism is harmful, right? Always, it wears you down. I mean, you know, even now, and I'm in a privileged position, I'm a professor, I'm earning good money. But you know, I experience day to day forms of humiliation, you know, this stuff gets to you. And just speaking about to Phil there, because I think we're both old cronies here. He just told me he's a little bit older, you know, this stuff wears you down. And, and we have this accumulated humiliation, and it's generational too, because, you know, to suddenly think that, you know, those of us who were raised in the 50s and 60s and 70s, the kind of treatment we had that somehow we'll just get over it and move on these things leaves, deep tormenting scars, you know, and and we haven't dealt with it enough because there's a fear of pathologizing disabled people. I mean, my view is if you didn't start off with depression, having a disability you, you would become have secondary depression because we're living in a very hostile world.

Phil Friend  29:45  
Is there in your experience, something that you'd offer to say to somebody because I I get totally what you're saying. You know, I'm now in my seventh decade. I'm a grandparent and grandparents experience different things from being a parent, which I also was. So I get that journey thing you're talking about. I thought I've got this sorted now. And then along came child and oh bugger it, I haven't really understood what a disabled parent does

Fiona Kumari Campbell  30:12  
Yeah, it comes back to hit you between the eyes, doesn't it Phil? (laughter)

Phil Friend  30:17  
Do you have a sort of, I don't want you to give advice. But it, many of the people listening to us, I hope are getting incredible help from what you're saying. And I'm wondering whether there are things they could do internally, that would give them a better chance of making sense of all this?

Fiona Kumari Campbell  30:37  
Yeah. Well, you know, so I'm not some sort of Oracle giving advice. But there but but there are a couple of things. And I did it last year for the disability history, months, I did a presentation on disability consciousness raising groups, and I'm gonna write that up, because I think there's a real need for disabled people to to meet each other. I mean, one of the downsides of mainstreaming for want of a better word is that disabled people are separated from each other. Right? It's, it's not like in, you know, that the Caribbean community in the UK that you can kind of all settle in one spot and have a lovely cultural background where you can kind of celebrate the good things and the bad, disabled people have been intentionally dispersed, right? I've written about that. It's quite intentional, right? So. So actually, role modeling and mentoring is important, a consciousness raising group, I found one example. So this is only in the last 12 months. So that's something that I would like to get off the ground is a project where disabled people get together, it's not a support group, or a whinge group or a bitch group, or whatever. It's the idea with a consciousness raising group. Each time people meet, they pick a theme, right? They pick a theme, and they talk about it, they look at the commonality and shared experiences, I look at the differences, and then they develop strategy out of that. Right. So that's the thing. It's about action. Yeah. So I think that that is that is really critical. The other thing can I say, and I've been quite shocked about this, because my contours of ableism book is social theory. And it was written for that market. It's, it's, it's got nasty big words in it. It's, it's not accessible in that sense. I mean, I've got other things. But, you know, I've had, I've had so many letters and emails from, from young folk around the world who have bothered to sit down and probably get a migraine in the process of reading it. Why? Because the some reason it's actually helping them make sense of their lived experience. It's like that kind of Belle Hooks idea again, and it's been a watershed moment for them. If they've almost been relieved of this burden, you know, because we blame ourselves as human beings, we say, why can't I be stronger, right? Why can't I do things better, and like this Olympic stuffs coming up again, and, you know, this idea of the overcomer. So I think one of the things I've emphasized and this is not just for ableism, by the way, we are living in a world where, you know, all sorts of things pass as truth and fact, and don't even get me on to this discussion. But we need to read more, we need to think we need to talk we need to analyze what people are saying, because some of the stuff that's being said, frankly, is just rubbish, right. And the problem that I have about the overuse of the word ableism at the moment, and it scares me is firstly, that the Americans are running the show. And I'm probably going to get absolute shit box back on this whole thing, right? But I mean, America is a Empire. And you know, like, Americans control printing the media and whatever. But It empties it by using it without explaining its meaning. What it does is it makes it vacuous, it empties it of its meaning, right? And that's really dangerous. The other thing is, it is a hostile conflict, way of using it, this idea of the "ables" being the enemy. I mean, what are we trying to do set up some kind of divisive politics here?

Simon Minty  34:16  
Again, you're raising so many brilliant points. And the fear that I have is we're closing the conversation, we're not opening it up. And I want allies, I want people to get it. I want you to understand and improve it, not to terrify the life out of them. But I do wonder sometimes I see a next generation, they go well, good on you, because you're a little bit, you're less soft for me, maybe I'd let a little bit more go and they're brutal. They're saying no, no, no, no. There's a line you mentioned about the, you know, internal mainstream, so it was intended mainstreaming of people 

Fiona Kumari Campbell  34:46  
dispersal. 

Simon Minty  34:47  
That's a better word. Phil and I run career development programs for staff who have disabilities who work for organizations.  We see them come in two or three days later, they leave and they're different and the reason being that its first time they've got to hang out with 12 other people who've got conditions.  They all talk about it without fear or judge, or it's all supportive. And boom. Phil believes it's because no, we don't go to special schools. So we don't get that Now, some of that 

Fiona Kumari Campbell  35:14  
He's right  He's right. 

Simon Minty  35:15  
Yeah. But I'm the but then I would flip and say I go to little people of America Conventions and I adore them. I it's a shot in the arm. It's empowering  We drink. And we have sex and lots of other things as well, however, 

Fiona Kumari Campbell  35:30  
Too much information!!

Simon Minty  35:31  
It's what everyone says. But we actually do have really good debates and discussions. The flip side of that is I don't want to live there. I do want to live in, I'm not going to get in trouble the real world. I don't, if that feels slightly strange. So I don't want to get stuck there. Maybe I want to be able to flip between the two. My last bit, you said about the American dominance, I think it's a if we are talking about disability rights and the studies and the academic, surely, we're sophisticated enough to be able to be critical of each other. There was a point where you couldn't you said the social model wasn't fact. Absolutely. But you weren't allowed to question it. But I think to take this for, we've got to be more sophisticated. 

Fiona Kumari Campbell  35:34  
We do we do and we have to be more more open. And unfortunately, there you know, you know, the problem, what happens with the history of knowledge, and you know, this is not a disability issue at all, is that sometimes you'll get you'll get orthodox ideas, and then some whippersnapper will come along, you know, and say, challenge it. And that will become like radical, you know, critical. And then over time, that radical criticalness then becomes the new the new orthodoxy, right. And we see this right, and particularly with factions, they are about controlling borders. So even with this kind of critical disability studies, there are certain things you can say and certain things that you that you can't say. But I want to get back to the issue of the you raise, which is really about coalition building, right. And again, in my last paper that I did at a conference for I'm o on intellectual disability, IACID, I talked about the fact that actually, again, for the last 10 years, I've been saying, Please do research beyond disability, I'm not saying don't do disability research, but look at how ableism affects other groups, there's, it's, it's been really quiet, there's been real resistance, the people who've picked it up being folk in India and places like that, you know, um, but not in the West. And one of the things that, you know, that really does concern me is, it's about letting go. It's also this hierarchy of oppression, like, it's, it's, you know, disabled people have a hard time and are oppressed. But, you know, other groups are also oppressed in different ways. And one of the problems that we're also seeing fought out in social media is this idea of we suffer more than you, you know, so, and Randall Kennedy, who's an African American, he says, I I refuse to be an accountant of atrocity, you know, this kind of oppression Olympics, and it's, it's endemic. out there. The coalition building stuff is really important. So as I said to you, like one of the things I looked at last year, was caste, the Indian caste system. And I was petrified because I mean, I, I've studied the area, but you know, you're treading on very delicate territory and, and looking at the ideas of degradation and humiliation, and saying, what can we learn from that system? That chimes with the disability experience? Where is it different? Right? And, and, and they're the kind of conversations and I agree with you with you, I think you should be in terms of your comment about that, going to that conference. And I said, I've seen those as we should be able to live in both worlds. You know, I'm, and I'm no great supporter of segregation. But one of the problems was when, and again, Phil will probably know about this, when normalization theory and social role valorization theory came about, it was about separating disabled people from each other. But not just that Wolfensberger said, disabled people should be separated from other devalued people. Right. So that and that's really divisive. So we need, we need to have both. You know, I recently did a project with disabled prisoners in Scotland, right. And many of those they were men, many of those men, they acquired the disabilities while they were in prison. They were older as well. But you know, nobody had sat down with them to talk about that transition experience. Yeah. And and that idea of meeting other disabled people, and what does it mean to masculinity? So I think we need to do more on that. And the form of responses, by the way, to Phil's thing is one of the things that I'm working about is to look at this series of ableism to see how we can intervene in things so it's always had a social change. aspect, right? Because the other thing is, um, as I said, there's no enemy, and there's no victim it constantly fluid and changes. So we need to to be able to identify the signs, the signs are available as IDs. And you can see this in COVID. Right, you can see this with the response to COVID globally, about which lives are worth living, right, the idea of human worth, and we're in some of the kind of like to see who's makes the decisions about who should be prioritized.

Phil Friend  40:36  
Yeah, I think that I think we're coming sadly, we're coming to the end of our time. But I think a couple of things occurred to me one is, you've you've pointed up and and talked about an area which I think Simon and I over many years have kind of talked about is, what can we learn from other groups? What can we learn from other movements, your points about the caste system, for example, I've never thought of that. But when you come to humiliation and disability and caste, there must be things we can take from the experience of those who've been through that caste thing that we can learn from the other thing that you've done for me, I've written a book, I've written a book, and not bad for a special schoolboy. And, and it's called Why are you pretending to be normal? And it's really, it's not in the league of your academic stuff. But what it's basically doing is saying, Why do you continue to pretend to be what you're not, you know, this is particularly aimed at those who've become disabled. hanging on to this old idea of who they are.

Fiona Kumari Campbell  41:39  
Yeah you know, there's two things Phil two things are, again, the limits of time, there's a great 1972 Japanese film with some cerebral palsy activists, and I can send you the information. It's called ICP. And, you know, the one of the guys is on the floor in a suit, he says, will never be normal, you're kidding yourself. It's a form of delusion, you know, to think that you will never be normal. So that's, I think we need to kind of look at that this idea of independence and autonomy. The other thing that I am starting to do work in, which is probably going to be quite controversial. Is this idea of hierarchy in society? What does equality mean? We don't all have the same level of abilities. And in fact, it's often the people who are not able to fit in with the system, right? who constantly get left out. So how do we how do we deal with differences in talent in in capabilities, at the same time to ensure that people are treated, you know, with dignity, you know, and that's another whole discussion. I mean, certainly, one thing that's happened with COVID is the rise of the cognitive class, for example. So those people who think they're normal out there, this is a good kind of finishing thing is, there's a quote that says today's normals will become tomorrow's abnormals. So we're seeing changes around this push towards higher cognition means that there's going to be a whole bunch of folk that are going to miss out and I'm going to find themselves with us lot. And because we're such nice people we'll welcome them in won't we happened with COVID. with people with underlying health conditions, suddenly hooking up with disabled people online. And you know, it's a bit of a rude shock.

Simon Minty  43:26  
Again, I have to ask you, one, might this be my last point? So I pretend I am one of the young whippersnappers who's throwing the word out? I'm challenging the orthodoxy. I'm saying we're doing it differently. Now. Isn't that? And then as you said, that then becomes what is the image? Isn't that what they're supposed to do? Aren't they meant to challenge the previous generation and start moving it forward. Are we are we trying to cling on to something isn't it time we, we changed?

Fiona Kumari Campbell  43:52  
I think it is that to be honest, I think we are living in a really an era of censorship, of people not knowing how to dialogue and listen to each other. It's either you like your for us, or against us. So actually, and the there's a lack of self awareness about where people are influenced by ideas that you know, where they come from. So I think we're living in a very different world. I mean, social media, in terms of its flow of information in terms of the dialogue is quite different from, you know, the previous days and as I say I keep reading, keep thinking, keep talking, but we also need to learn the art of dialogue. How do we how do we talk with people who have a different perspective from our from ourselves, and, you know, if we just disagree with them, so my problem is and maybe I am an optimist, Simon seriously, but I do worry that there's lots of bandwagoning so suddenly as a say all these people using ableism and it's kind of like it's a new tool now, you know, and, and, and it's really offensive to be talking about the ables. Those ables, you know, what are what what are we doing? You know, we're not the kind of Black Panthers or the crip Panthers, you know. And I, I think the other thing is, you know, any politics just focused on difference rather than also looking at similarity is very dangerous. It's very divisive.

Simon Minty  45:20  
Phil, do you have anything

Phil Friend  45:21  
I could sit here for the next week? I am just enthralled seriously, I think we have to get you back. And we definitely have to focus on other things I'm going to be I just think that it'll be really interesting, to see our postbag. I'm waiting to see what people think of you know what you've been saying. Because I've found it in enthralling. I've been in this industry and as a disabled person, since I was a three year old, and the journey you've described, I get completely, but the world we live in now is different. And we do have to find ways of managing that.

Simon Minty  45:59  
Thank you so much, Fiona, it's been fantastic. having you on the show an absolute joy.

Fiona Kumari Campbell  46:06  
That's great. I've loved it  to up love talking. You know, we're a community I've loved talking to you about also where this stuff chimes with your own experiences as well.

Phil Friend  46:15  
Well, thank you very much, Fiona. It's been an absolute pleasure. Thank you.

Announcer  46:19  
This is The Way We Roll with Simon Minty and Phil Friend.

Simon Minty  46:23  
Fiona is great, she is well worth her money. And I think she is talking a lot, a lot of interesting stuff, particularly because I do feel the world of disability, the language you using the models, all the different ways of understanding this, and new generations is changing. So it's really powerful to hear from someone like her. And also because she's not just saying this is what I like or this what I think it's it's rooted in evidence and research and thought, and I really like that.

Phil Friend  46:54  
Yeah, well, I can't add much to that, if I'm honest, I, I just, I just think it was a real tour de force and, and, and the takeaway for me, one of the takeaways was, let's be sure we understand what terms mean before we start throwing them around because clearly, that's Fiona's experiences, ableism has been in some ways, ripped off, hasn't it?

Simon Minty  47:19  
And also the we must be able to discuss and explore and listen and reflect rather than just demand or this is the statement is still in it needs a bit of consideration. And you and I we you know, we, we change our thoughts as we hear new stuff and interesting stuff. And that's, that's part of the deal. 

Phil Friend  47:43  
True absolutely. Well,

Simon Minty  47:44  
yeah, we'll get her back. 

Phil Friend  47:46  
Definitely.

Announcer  47:48  
This is The Way We Roll presented by Simon Minty and Phil Friend, you can email us at [email protected], or just search for Minty and Friend on social media. We're on Facebook, Twitter, and LinkedIn.

Simon Minty  48:03  
It's that time of the show where we bring in our friend and our cultural commentator, Geoff Adams think, Geoff, you give us always great recommendations of things to watch read look out for what have you got this month? 

Geoff Adams-Spink  48:18  
Well I recently wanted to share with my new bride Dawn, one of my all time favorite books, the Shipping News. So I dragged it out of Audible so that we can listen to it together. And it reminded me just what I delight that book is and I just think for anybody who hasn't read it. It's an undiscovered treasure. The only caveat I would put in is that the audio book appears to be abridged. And I personally don't like abridged novels. I think, you know, you should let a novel breathe and listen to it in its entirety unless you've got a very good reason not to. And the Shipping News is a very good reason not to abridge a book because it's all absolutely solid gold. It's brilliant prose. It's a book about redemption. It's a book about grief and loss. It's a book about a guy who is, as they described in the blurb, a third rate newspaper man had a miserable upbringing and a miserable life and a miserable marriage, he's got two children that he loves, who his wife tried to sell to either I don't know, pedophiles or pornographers and happened to die in a car crash. So he's left with the two kids, he got them back. And his aunt comes along and says let's go back to Newfoundland where our family comes from. And it's about him picking up the threads of his life and making something of himself it almost in spite of himself. That's what it's about.

Phil Friend  49:49  
I remember reading this book like you Geoff a long time ago now. And I remember shivering, reading it the descriptions of the cold, the winter, it is unbelievable it made me physically shiver. It's extraordinary writing, you say abridged? Can you help me understand what abridged means?

Geoff Adams-Spink  50:12  
It means I large bits of it, it means large bits of it have been cut out.

Phil Friend  50:18  
But how did they decide which bits to get rid of?

Geoff Adams-Spink  50:22  
Well, I wish I knew because there are bits in the Shipping News that I can remember reading at the time, which was probably the early 90s that are not there. And I that's what alerted me. I thought, oh, five hours, that doesn't seem quite long enough. And then I was listening to the book and thinking, I remember that scene. And then it developed. No, that's gone. So

Simon Minty  50:45  
If you make a film, which they did, obviously, you have to abridge it, and you will turn into a screenplay because you have to interpret it for two hours on the screen. But an audio book, I take your point just read the book. 

Geoff Adams-Spink  50:59  
Dont do it just don't do it. I mean, unless you unless you're somebody who needs to listen to, you know, 25 audio books in a week in order to study for a course or something. If you just want to imbibe some literature, let it breathe, do the whole thing. Don't don't chop bits of it out. 

Simon Minty  51:18  
I mean, Phil does always ask how long they are, because he hasn't got time to invest. But this sounds like one you would invest your time and I will

Geoff Adams-Spink  51:26  
Even if it was three times as long I would do that.

Phil Friend  51:30  
I'm reading a 20 hour book at the moment Mr. Minty, 20 hours of total. I'm not quite sure what it is Shipping News. No, I'm sad it. It's a wonderful, wonderful book. I agree, Geoff totally.

Geoff Adams-Spink  51:44  
And Phil, you're right about Newfoundland, which is which is what's described in the book, mainly, I mean, it's, it's this incredibly inhospitable landscape. But Annie Proulx manages to populate it with extremely warm, interesting, eccentric, funny, strange, peculiar characters. And to the extent that I think after reading that book, I thought I need to go there and have a look at it myself, to be honest, because it's, it's it's such a joy. It's such a joy to, to hear, described. And I have to say, in in, you know, having trashed the audio version for being abridged, I have to say, Robert Joy, who reads it does an incredible job of managing to reproduce the Newfoundland accent, which is sort of a mishmash of Canadian, English and Irish English. It sounds beautiful.

Simon Minty  52:46  
And I believe I have this book, and I've not read it. I think someone gave it to me. And I'm now thinking Come From Away with that musical. I think that was set in Newfoundland. But I'm mixing things up. Now. You have another recommendation television, 

Geoff Adams-Spink  53:01  
I do this is called Mare of East town. It's a play on words. Of course the mare doesn't it's not MAYOR it's mare, but it's not about a horse either. It's about somebody called Mare, a middle aged woman played beautifully by Kate Winslet. It's set in a very depressing post industrial town in Pennsylvania. And she's a middle aged cop detective, who seems to spend all her time helping people in the community and getting nothing but abuse back. And at the end of the first episode, a horrible murder happens. And she spends the rest of the series investigating this murder and trying to try to solve it and trying to reconcile some of the awfulness that's in this in this town. The town seems to be full of people who either have no work or have part time work or precarious conditions of employment. And they, they seem to be hooked on opiates. And it's a very depressing backdrop, but she pulls out of it the most extraordinary performance. You know, she's at war with her mom, she's at war with her daughter. She's at war with all the people in the town because they you know, she's not, in spite of doing everything for them. She's not doing enough for them. She's under appreciated, but she's brilliant. She's absolutely brilliant in this series, and she is she has such a depth of humanity. It just shines through. It's very well acted, it's very well shot. And there's a beautiful piano score that runs underneath a lot of the scenes I seriously recommend. It is one of my all time I would say top five things that I've seen in the last year.

Simon Minty  54:50  
I feel this month you've come up with some real misery stuff, but they're they're belters. These are classics of their time and things that have really moved you one's very current ones a little bit in the past I've heard great things about their Mare of East Town, but I haven't I can't see it's not on Netflix is it? Where is it?

Geoff Adams-Spink  55:08  
It's on Sky Atlantic which I which I view on the NOW TV platform, just get the month free trial, watch it and then dump the trial. (Laughter)

Phil Friend  55:19  
How many episodes then you said it's a series.

Geoff Adams-Spink  55:22  
I think there are eight or nine something of that ilk.

Phil Friend  55:26  
And it shifted Lupan for you talked last time about Lupan. So this is up there. The Mare of thingy.

Geoff Adams-Spink  55:33  
It's it's up there with Lupan and other things like Succession and Breaking Bad and Better Call Saul. Stuff like that. It's really really, really very, very excellent. And I promise next time to come back with stuff that makes you laugh.

Simon Minty  55:51  
You always make us laugh Geoff forgive me because I know you're a fan of Fargo there's something Fargoesq about this if I really misjudged the Mare of East Town?

Geoff Adams-Spink  56:01  
You haven't misjudged it, but I think the thing about Fargo is that it sort of describes the cataclysms that happen when things go slightly wrong. Whereas I think Mare of East Town is where things have gone horribly wrong. And somebody is trying to put them right in Fargo there's almost no redemption. It's just it's it's it's a catalogue of weirdness. I mean, it's great. It's brilliantly watchable. But it's, it's not the same. No,

Simon Minty  56:31  
thank you for that clarity. Thank you, Geoff. Yeah, I you know, as ever, always fantastic things that you recommend to us. We will see you next time. 

Phil Friend  56:41  
Thank you, Geoff.

Geoff Adams-Spink  56:42  
Cheers, guys. Take care.

Simon Minty  56:48  
Alright, that's it. Um, thank you so much. We hope you've enjoyed it. If you are new to our show, and this is the first one you've listened to you. We've got lots of them. So go back a little look and listen to our library. And thanks for sticking to the end. We appreciate that.

Phil Friend  57:02  
You can always contact us on our email, of course, which is [email protected]

Simon Minty  57:08  
We're also on Twitter, Facebook and Beacon but nobody uses Beacon. So please use Beacon look it up Beacon and then The Way We Roll. That's it.

Phil Friend  57:17  
Okie dokie Cheerio.

Transcribed by https://otter.ai

Introductions
Professor Fiona Kumari Campbell
Ableism Discussion
Cultural Corner Geoff Adams-Spink