Dan Goodley is a professor of disability studies and education at the School of Education, University of Sheffield. Dan co-directs iHuman, which sits at the intersections of Critical Disability Studies and Science and Technology Studies. iHuman is addressing some significant questions of contemporary society including: what does it mean to be human?
We chat about who and how do we decide who gets to be human? I pose what thinking about the rights (or lack of) that Britney Spears has is relevant to disability rights thinking.
Dan wide ranging thoughts on what disability and other intersectional studies have suggested to him. These include:
Thinking about “ability” and what the social model of disability suggests. What a critique of idealising able bodies and able minds might mean.
What medicalisation means and how it is different to medicine.
How humans are interdependent and what that suggests about our relationships.
How technology is impacting Dis/abled humanness.
What being a Nottingham Forest Football fan has taught Dan.
And Dan’s life advice: Move from the object to embrace the subject.
Dan has written the thought provoking book: Disability and Other Human Questions. You can buy his book here. Check out the podcast below or read the transcript.
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Dan Goodley What disability teaches us about being human, interdependence, medicalisation
(unedited transcript, expect typos etc.)
Ben Yeoh (00:00): Hello, and welcome to Ben Yeoh chats. If you're curious about the world, this show is for you. What does disability teach us about being human? On this episode, I speak to Dan Goodley. Dan is professor of disability studies, and we chat about how disability provokes deep questions about humanity, such as who is allowed to be human and how interdependent are humans. If you enjoy the show, please like and subscribe as it helps others find the podcast. Thank you, be well. Hey everybody, I'm excited to speak to Dan Goodley. Dan is a professor of disability studies and education, and he has written the thought provoking book, Disability and Other Human Questions. Dan, welcome.
Dan Goodley (00:50): Hi Ben. Thank you very much.
Ben Yeoh (00:52): So first question, who and how do we decide who gets to be human? I asked this as this comes up in your book and I don't think I had fully appreciated how certain majorities or say elites do decide on who gets status as human rights or human dignity. And to take a little bit of an adjacent area I was following this year a lot of the news on Britney Spears in the US and I was astonished by how many of her rights had been taken away from her. And then I was reflecting on what is true for Britney has to be, and even is much more true for many people with disability and actually other groups of people as well. And that kind of felt really shocking to me and then I was reading your book and I thought, wow, there is a really big question about who gets to decide who is human or not. From your thinking and what you said in your book, what do you think of this question?
Dan Goodley (02:01): Well, firstly, thank you, bringing together a consideration of human disability and also Britney Spears. I applaud you for the question. I mean, yeah, I think the question of who decides to be human or if you like is allowed to be human is an old question asked by many humans over the years and I suppose one of the ways I would want to answer that question would be through the ideas generated by disabled people and by the ideas generated by disabled people's organizations. So anything I say today is said through and aware of the contributions of disabled people and their writing in the world. And I suppose if we think of the case of Britney, one of the key elements that her fans and Britney activists have pushed has been the question of capability and autonomy that's been taken away from her in relation to her own life. And so there's been some real, really interesting documentaries and obviously discussions through social media. I think that's positioned around or centered around the question of whether or not Britney Spears is being allowed to live the life that she herself wants to live.
Dan Goodley (03:38): And I think that's a question associated with human ability and it seems to me from listening and reading to the ideas coming from disabled people is that this idea of ability is something that we feel we kind of know, we all kind of hold around these assumptions in relation to ability, but it's actually quite a tricky concept. And it's interesting how some people are assumed to be able whilst others are not. And of course disability is the opposite of ability in terms of the way it's constructed and for many disabled people, their rights are taken away from them and based upon the notion that they are not capable, that they don't have the abilities, the competences to live their life. And it seems to me therefore that through disability whilst we need to sit with that very phenomenon, we need to spend a little bit more time, perhaps a lot of time asking questions of ourselves about the assumptions that we hold in relation to this [ ] One Way We Could Start To Critique What it means to be human or who is allowed to be human is by sitting with the concept of ability and subjecting that to some deep critique.
Ben Yeoh (05:03): That's super interesting and I'm sure we'll get on to kind of thinking about this social model of other models of the world. I guess I'm sometimes a little bit worried about labels and how we kind of use and misused words and in fact, interestingly recently I was called ableist by somebody and actually in this particular situation, I thought it was sort of very ironic because I'm sure being misused because this person was simply being abusive and I called them out on it. However, I am certain that there are many times that I am being what I think people would call ableist in this sense of centering the world around able people, how else we might think about it? So I was just thinking about what it means to be a productive person or how the world is designed, how useful do you think is this idea of ableism or centering under that, and should this be the kind of model that we should be pushing back against, or at least scrutinizing in order to assess more deeply what it is to be human and who we should allow to do. I sometimes get a bit worried about words and labels, but they can be helpful in many instances.
Ben Yeoh (06:28): In fact, recently I was called an ableist and I thought at that particular instance was ironic as I was pretty sure it was being misused, this person was simply being abusive and I called them out on it. However, I'm sure a lot of the times I am being what I think some would consider ableist as in that I center my world view around this idea about what a typical productive person might be, the world being designed for that typical person and I just wonder how useful is this idea as a concept that maybe we can criticize and push back against is. And then I think towards well, actually the last few decades, I was going to say this year, but particularly we're hearing these instances of horrific institutionalized abuses and it seems to me that some of these abuses are rooted in some of this notion or rather had the institutions or the people in the culture had centered their thinking from a different spot than you could see that maybe we wouldn't have appear to have those type of abuses. Obviously they are very complicated and it's not necessarily going to save them, but I just kind of think that actually that thinking of the world is maybe much more useful than some critics give it credit for. I was wondering what you might have thought about that.
Dan Goodley (07:59): Well, I think ableism and disablism are often used interchangeably and I think for example, in the states when people talk about people being ableist, I personally think they're talking about them being disablist. So I suppose for me, the way to think about this is that we now enjoy four decades of scholarship, writing research driven by disabled people and their allies and in the UK, for example there's been a lot of focus and continues to be a lot of focus on disablism and disablism is the institutional exclusion of people with impairments. And of course that remains an absolutely crucial part, not only of research, but obviously of activism, of the arts, of kind of pinpointing those moments of exclusion and challenging them and that's absolutely essential. Over the last decade or so, there's also been a move within activists and academic and artist circles focusing on something called ableism and I'm thinking of the work of people like Gregor Wolbring who's a disabled writer in Canada. And what Wolbring does is to say, yeah, disablism is absolutely significant and we need to contest it and we need to understand it but one of the things that kind of goes on in our everyday lives is that we don't subject to the same kind of critical scrutiny as something called ableism.
Dan Goodley (09:30): Ableism is the idealization of able bodied and able minds. Something I suppose we know when people talk about the able bodied and how the able bodied occupy a kind of position which is often kind of high in the hierarchy than disabled people. What they're doing really is they're talking about ableism and it's intriguing to me because I think that we don't actually question and similar to the idea of ability we don't actually question or even kind of subject to kind of some real critical thought the way in which ableism underpins everything. So not only are, you know, the classic case within disability studies is the inaccessible building that the wheelchair user cannot enter. And there's an example of disablism, but underpinning that is what we might call an ableist architecture, physically as an architecture, but also an architecture in terms of kind of a mindset or an intellectual or a philosophical view and it's quite worrying even that even some of the more transformative or radical thinkers that we might think of often themselves also do not subject their own kind of ideas to this kind of interrogation where they actually might be ableist.
Dan Goodley (10:52): I mean, I'm filling out a research application at the moment. The first question on the research application is research vision and implicit within that is vision. So this very ocular centric and I'm just thinking if I was a blind scholar or a blind researcher filling that out, is there a moment there, already the language being used, which is kind of excluding me. And so I think to disablist and ableist, we need to unpack these two things. They complement one another, but for me, they're also very different conversations that we need to have. So I'd be interested in someone saying to you you're being ableist, perhaps, maybe they're saying you're being disablist, I don't know. We need to be clearer in the kind of language that we use, because these are complementary practices, but they are very different practices.
Ben Yeoh (11:45): So, I agree. In this instance, I think they were hiding behind-- they were being disingenuous, but actually had they wanted to be more specific, I think, thinking about disablism rather than enablism, but I thought it was ironic because it made me think that actually-- cause I thought back to that incident and said, no, but I actually thought back even just to my week and I was thinking, well, actually you probably would've been right had you just picked out some day to day or some of my normal thinking, but actually in this instance you were wrong. So that was one of the triggers for it and I guess this kind of leads into one of the themes of your book on the role of technology as well, because in some ways that is also bringing this other dimension, as in what happens if we are somehow technology enabled or even technology disenabled like somehow [Inaudible:00:12:43], some people would argue that social media is disabling us in certain ways, or at least is an extension of us not, you know, which could have be for good or for ill right? So that was the idea there, but obviously you can have it in physical mechanical limbs. We're seeing it in terms of interpreting brain waves for people who are pre-verbal or non-verbal, or have an issue with verbalizing, can now verbalize somewhere. And I was wondering, is this influencing your thinking and actually is this maybe one way of people to unpack it of saying, well, if technology is doing this and is making us think about these ideas in a different way, maybe we should just be thinking about them in a different way, regardless of where their technology is, which is, I thought one of an interesting reflections I had on reading your chapter on technology.
Dan Goodley (13:40): Well, I'll be honest I have a, like most people, a kind of [love/hate] relationship with technology. It's a love and hate thing. I mean, it's a Freudian kind of classic case study here of something [] also something that I push against and I think what's interesting about the way in which culturally we think of technology and disability, I think there are a couple of kind of common ways or common stories that are told. I think one of them is that technology permits disabled people, people with fiscal impairments, for example, an opportunity to become as functioning as nondisabled people in the world. And I think that's a story that we need to kind of challenge and to be maybe cynical about sometimes, because I think that leads to a second kind of area for me, which is around-- and it's a question really, is how do those engaged in technology understand disability? And I think what happens is that if we hold an idea of disability as something that has to be cured or rehabilitated through technology, which let's be honest, this is a kind of common trope that we have within our society. Then there's some real problems going on there about the ways in which disability is understood and I think like most areas of life and technology is just one of them, disability rarely gets offered up as an opportunity to think more broadly about how we understand the human condition and it frustrates me often that disability is often excluded when people are exploring what it means to be human.
Dan Goodley (15:34): It's almost like the last chance saloon, disability might eventually get thrown in there. And just as there's been some really important and crucial work, for example, around race or around sexuality or around gender, which is all work that we need to kind of come behind, I want to ask why is disability always left out or seems to me anyway, often left out of those conversations. So we go back to the point of technology. How often do we ask or consider the fact that many disabled people are digitally excluded for a variety of reasons. We know this because many disabled people live in poverty [ ] the. technological offer, what is the offer for? Is the offer still associated yet again with the notion of a rehabilitative offer of technology? Because if that's all that technology's being offered the grounds on which technology is being offered, then you can see straight away that there are some pretty dangerous and dodgy ideas associated with disability that are just kind of being implicitly brought into the practice.
Ben Yeoh (16:42): Yeah, I agree. It's interesting talking to a lot of my friends and allies when I mentioned that, oh, the statistics, at least in the UK are, you're talking about at least one in five somewhere on a disability spectrum or some sort potentially higher. And certainly in the world, you're talking, at least a billion people again, probably higher. So when you're thinking about all of these allied groups it tends to be one of the largest and yet is probably like you say, not so involved in the conversation. And then the conversation is led by not necessarily-- obviously the whole range of advocates that you could have, which I find is quite telling as well. And I do think thinking about your comment of technology, and then also we had it in design, I've been thinking a lot about, and I guess it's been around a while, but this sort of social model idea of disability, where if you just sent it around, I guess this is just ideas of inclusiveness across everything that you'd like to be inclusive.
Ben Yeoh (17:50): You get a world where essentially everyone, or at least a vast, vast majority lives peaceably and well which just seems extraordinary. And I was actually talking to a philosopher the other day, Jonathan Wolf, who was mentioning how that it impacted his philosophy. And we've had people like Tom Shakespeare talk about this as well and he was saying he was a little bit doubtful about utopias generally, but at least taking this model just a little bit further along from where it is today, you kind of see that actually you have enormous net benefit to so many kinds of peoples that it's almost extraordinary that we haven't explored it more. I was thinking, what do you think about where we are with the kind of social models of this idea and how it might impact our world and what we could be doing about it?
Dan Goodley (18:47): Well, I mean, I'm very happy with the idea of utopias. I think it's probably better to get out bed in the morning with a utopian view of the day than a dystopian one and personally, the social model disability for me was a radicalizing experience because at that time as a psychology undergraduate being subjected to some very pathological views of not just disabled people, but of human beings more broadly, the social model came along and it did something very affirmative because what it did is it said you cannot understand the human condition of which disability is part outside of the social world. And any sociologists listening would think, well, that's pretty obvious, isn't it? I mean, we are what we are because of the social world. Something curious happens with disability when it enters the world people tend to understand straight away the word disability in terms of either some kind of individual tragedy, deficit or flaw, one kind of something wrong with a human being. And as soon as you start doing that, you then draw upon ideas that are set up to understand that kind of deficient individual outside of society. Some of those ideas come from psychology, for example.
Dan Goodley (20:19): And so the social model remains for me one of the most important interventions in the field of disability, but also has many connection of course with other transformative ways of thinking, whether it be associated with black lives matter or whether it be associated with current trans politics, which is essentially asking us to pause and to act upon the fact that certain human bodies and minds are not given the same value as other human bodies and minds. So the social model is if you like a kind of an entry point into a whole host, a smorgasbord of different kinds of theoretical and political ideas. There's been a lot of energy spent over the last 20 years critiquing the social model, looking at the social models flaws saying, well, have we gone too far? Have we flipped over? It's a little bit like the labor party. And it seems to me that the social model, particularly in these post COVID times, has never been more relevant than today. So the social model for me remains like I say, this kind of entry point and with any entry point, you can go through a variety of different roads and routes. And it seems to me that these opportunities are not only for understanding and pushing the social character disability, but also seeing how the social character disability connects with other aspects of the human condition, each of which of course are also deeply social.
Ben Yeoh (22:12): Yeah. That makes a lot of sense to me and I reflect this also touches on your technology point that we are, well, I'll give you a couple of examples. In Iceland today, I was speaking to this with Sally Phillips there are few to actually no people with down syndrome being born now because of the way that they do their testing and I was speaking to some people who are very deeply involved within deaf culture and because of medical therapies for hearing, there's a big debate as to the impact on what's a really rich and beautiful culture in itself as well. And I think stronger thinking about the social model, imperfect as it might be itself, as all models of the world are not the world, right? But as an entry point could be really helpful for thinking about that. But I was wondering, did you have any reflections on this, on how actually marginalized communities are becoming potentially more marginalized communities and a social model is perhaps a way back in?
Dan Goodley (23:29): Yeah, I suppose the first thing I'd say is that the way in which the social model language or the social model discourse has kind of entered the popular discourse is inevitably at least to some simplifications. And so there's a very simple distinction made between the medical and the social models of disability. What happens without that kind of very simple distinction is that those people associated with the medical model often feel very hard done to they often feel that they're being victimized. Now for me, I think what the social model does is because it's social by nature, it views all practices as also having this kind of social, cultural, economic, political aspects to them. So when you talk about those examples of testing for down syndrome or medical interventions around in relation to deaf people or the deaf community. I'm now starting to think about different words and different ways of understanding that perhaps are not as simple, but might actually be a bit more useful in understanding what's going on there. And I think what you're describing there is medicalization and medicalization is very different to medicine.
Dan Goodley (25:06): You and I are not going to you know, we get a headache, we're probably going to think and at some point embrace some of the ideas that come through medicine. We'll take a tablet for headache, but when we enter something called medicalization, this is where it's become a totalization in discourse. And I think that we are to draw upon some kind of ideas from disability studies, but also from science and technology studies. We are living in a particular period of time which is framed by medicalization. That is where the human condition is increasingly being understood through the discourses that we might call broadly medical and anything that's medicalized means that we end up simplifying and going down a particular route and also throw in a couple of other ones, which I think are kind of bedfellows, if you like. Psychologization, this is where any understanding around the human condition, whether it be emotion or whether it be the way we think, cognition, that there's some powerful ideas out there that come from psychology and fellow disciplines that end up endangering the way in which we understand ourselves.
Dan Goodley (26:33): So it's impossible to think outside of this kind of very powerful discourse of psychologization. I'll throw in a third, which is psychiatrization, which is very difficult to say, but again, you see, these processes are drawn upon very powerful ideas through which people now tend to understand themselves. And of course, if you think about the current debates around the mental health crisis within young people, for example, one of the things we need to consider is the extent to which mental life, or whatever we want to call it, is increasingly understood through very, very powerful processes of psychologization and psychiatrization to the extent to which it seems for all of us actually, almost impossible to talk of our emotional lives without drawing upon some preexisting, very powerful ideas from medicalization psychologization. So this is what the social model is doing, again, it's an entry point into thinking critically about the very words and the very ideas that we use to understand our everyday lives, living with a human condition.
Ben Yeoh (27:53): That's super interesting. I thought about medicalization, but I hadn't thought about it and the way you articulate it, I do think, yes, you could think of those examples that I gave and described as a sort of medicalization thing happening and if the social model gives you that, that's very interesting. And I do that because actually I'm thinking a lot about death at the moment as well as an idea and I think that is something which is obviously as well being very medicalized. And it's interesting, this idea, and also science is a process mostly and so scientific ideas around the brain or psychology or psychiatry are models and processes. And for instance, if you talk about psychiatrization, most of those drugs, which work on the brain we don't really understand how they work very well, if at all for a bunch of them. So, it's quite interesting. So you've got this kind of empirical sort of medicalization of a thing but yeah, there are social ways about thinking about those ideas as well, and maybe they do go hand in hand and intertwined and it would be more useful to try and think of them sort of together, not necessarily oppositional, but certainly not one without the other, which is your point about thinking about rooting yourself in the fact that the human world is nothing without the social world.
Ben Yeoh (29:31): That also brings me onto another thought, which is through your book on interdependence and some of that. We talked about it a little bit on potential interdependence on technology and these other ideas and I was thinking-- I was discussing the other day with someone actually it was with this philosopher on the philosophy of music therapy or music performance and I was noting that I found this was an incredible thing in philosophy because someone is enabling somebody else to produce music. And the end musicality only exists in the relationship with all of that and it doesn't exist without what we would call this interdependence, but to me, it was kind of beyond an interdependence because the relationship, the connections were the thing, the actual end piece of music, beautiful as it is, does, does not exist without all of those connections. And then reflecting on your book, I was thinking that actually that extends to I mean, potentially all of human life, right, but with all of this, this fact that we are nothing that's probably too extreme, but we are not the same without our connections and interdependence and understanding us without that seems to me a misreading of the human condition, which again, I hadn't really thought about that through say an ability disability lens or this performances lens. But I was thinking about extending that and I thought, wow, this is kind of a really-- potentially you could apply as quite a deep insight and therefore critical to maybe some other ways of thinking or opens up some things. Have your thinking of about-- maybe you could describe how you thought about interdependence in your chapter and maybe how you are using it in your current research and thinking now.
Dan Goodley (31:31): Yeah, I mean, interdependence is a big idea that's come not only through disability research, but very much through feminist research through critical race ideas around community. So it's a concept that's been utilized. And of course you could argue that at the heart of many political or cultural groupings is what we're talking about here is a kind of notion of community. I think interdependency takes on a particular significance in relation to disability. Firstly, I think disability is the kind of quintessential interdependence category because we think historically disabled people's relationships with PAs, with the various technologies over the years display already what we might call a distributed self. This idea that we are what we are through our connections with other people and with other things and it frustrates me when I hear conversations about interdependence and disability is not the first to be mentioned because it seems to me that disability, like I say, is like a quintessential position. I think we also need to recognize that we live in times whereby interdependency is often relegated and we this goes back to the discussion we were having earlier about the dominance of ableism and the ways in which ideas of ableism rely upon processes like psychologization and medicalization.
Dan Goodley (33:19): What they're all doing is essentially saying individuals, when they work well, function or are competent or autonomous have value in the world and when they don't then they fail. Whereas interdependence, what that's doing is, is kind of turning that on its head and saying, no, we are what we are through our distributions, our connection…. quite clearly that music is a collective process there. To what extent do we value and celebrate our distributed selves? And let's be frank here, we go from one context to another throughout our life course where it's all about individual achievement. We think about schools and how schools are set up in particular ways to must I fill kid's heads with ideas that will permit them to pass their exams. It's all about individual achievement there. We look at kind of what our workplace is. I'm thinking about my own, which is university workplaces, which are all about individual achievements, about being agile, responsive. We hear this language all the time in these turbulent times and what's worrying it seems to me is that we still live in a very, very individualistic culture.
Dan Goodley (35:10): So for me, the idea of interdependency is an antidote to that and to push it even further, if you really want to understand what interdependence is about, well, go to disability because disabled people's communities and disability theory that's been generated over many years now is always kind of alerting us to the fact that when the human condition is word world, it's doing so embedded within a community embedded within a variety of kind of crucial interrelationships. Let us not forget here that disabled people themselves are always embedded in those communities and quite frankly, some of these communities would not exist without disabled people. I was once at a seminar where someone asked the question, how much are autistic people costing the economy? Well, in other ways, thinking about that would be, well, how much money are autistic people generating for the economy through the industries that exist, through therapy, through psychology, through all these specialisms. Again, there's this idea I think that's based upon the notion that disability is somehow kind of sucking resources out of society when actually disabled people's place within it and we think more broadly about our place within our communities is more kind of relational. So I think, yeah, interdependence is a potentially affirmative understanding of essentially our very relational nature as human beings.
Ben Yeoh (37:11): That's super interesting. I hadn't appreciated until I heard your articulation about how you can really see disability as your go to root idea for thinking about in interdependence and like you say, this is partly because there's so many other things going on that oftentimes that maybe most of the time disability is not the first idea or ideas around that which come through. And now that you've put it like that, it obviously should be the first way of thinking about this because it's where it is and it's rooted. So I find that really usefully--
Dan Goodley (37:55): I mean--
Ben Yeoh (37:56): -- challenging.
Dan Goodley (37:56): Sorry, is it okay to come on--
Ben Yeoh (37:57): Yeah.
Dan Goodley (37:57): -- Come on that point. I mean, yeah, I suppose I would just kind of maybe disqualify what I've just said in some ways around disability. I mean, there's a frustration for me that disability is often not considered and I suppose if somebody works in the area of disability studies and disability research, I'd want obviously disability to be a kind of a conversation starter. But I think also, we have to be careful here that we don't replicate some of the kind of divisions that have happened in the past. So I wouldn't want to argue that disability appears without recognizing that we are all very intersectional and there'll be moments within particular spaces where class and race and sexuality, gender, they might actually be the, if you like, the starting conversations here. So I just want to be careful that I wasn't just pushing through this kind of idea that disability is the grand master narrative that everybody should be thinking …more that we need to think about how disability intersects with other kinds of identities as well.
Ben Yeoh (39:15): Yeah, no, well heard and there's a tendency sometimes by, how do I put it, to say majority groups to kind of divide and rule as they have done for the centuries, which obviously we would not want but I do think the point is well made in terms of the challenge that you've given to me that I didn't again, like there are these other and it's very intersectoral like you say disabled people are often poor and things like this. But particularly thinking about independence and relationships of that type of thought, I hadn't fully seen it through that disability lens, which I think would be useful on that. And also because so many things in our world do rely on that relationship across creative arts or even business and the things. So I'm kind of just thinking out loud on that.
Ben Yeoh (40:15): That maybe leads me to one, somewhat intersectional idea also in your book about desire. I was listening to Amia Srinivasan, who's a philosopher now at Oxford, probably most famous for her feminist philosophy, although she writes really beautifully about animals as well. But she's written a book which has a lot about desire and there was one thing I was picking up in both of your works, which is this idea about how much desire-- Well, I guess there's this interdependence part, but to what extent is learned and to what extent culture shapes that. And I was kind of surprised to see a chapter about desire in your book, which probably was a challenge to myself in its own way. Maybe you want to reflect about what you were thinking or saying about raising that question in your book about other human questions.
Dan Goodley (41:22): Yeah, well, it comes from a number of different spaces. I mean, one of them is associated with what we might call Crip theory, which is an idea generated from the disability studies community which deposits this idea that disability is something to be desired. And that is a really interesting idea on many levels. I mean, what it does, some people find that really challenging, because of course we're brought up to understand disabilities as being the very last thing that people would desire. But what Crip theory does is it suggests that disability is part of the human condition, is something that could be desired for what it can give and what it gives in the world. And I really love the idea of this kind of idea of disability being very productive in the world. This idea of desires being productive also links into a kind of philosopher that I really like and who talks about one of the real hang-ups that human beings have is that they're just caught up in this never ending cycle of desire, which is predicated upon designing the things that we feel we lack and we try and, you know, you get that theme. I kind of just speak personally, but it's like in those moments upon online shopping, where there's a real feeling of, you know, the desiring that very object that I'm buying. As soon as it's bought, I'm probably as miserable as I was before and this idea of desire as lack, this model of desire is a dominant model within our societies and we spend our lives … as just replicating over and over again, this notion of them getting hold of the thing, the object, that we feel we lack.
Dan Goodley (43:38): So going back to the Crip theory model, what that's trying to say is, well, how might we remodel or reshape it, an understanding of desire? And one of those kind of remodeling might be to think about how we desire connections with others that in that desire, this kind of more productive model desire, we are driven not by filling this kind of empty hole, if you like, within us, but we are driven by the connection with one another to be yours, like desiring machines coming together, coupled together to create something more beautiful in the world. And so it seems to me that what disability research and disability theory is doing is not only is it challenging some of these old ideas of ableism and disablism, not only is it challenging the kind of dominance of medical models, it's also turning up in the world and offering us new ways about how we might feel about ourselves and others and I really love that, and that kind of taps into my more utopian moments in the morning when I'm trying to be more productive with myself and with the way that I see the world.
Dan Goodley (44:55): And indeed, I think you can see that there's truly beautiful moments of connection are precisely the kind of things that we not only should desire more, but actually often do desire more. It is only through connection with others that we start to realize different aspects or different, if you like, potentialities … causing the human condition. That said, I will be totally and brutally honest, I spend my life living off in that model of desire as lack and it's something I'm trying to work through accepting that it'll always be with me at the same time as trying to kind of develop new ways of desiring in the world for connection. And that again is where I think that disability ideas and the disability community have so much to offer.
Ben Yeoh (45:51): That's fascinating. Maybe that touches on then a couple of personal things and I guess it glances on the desire connection things. I was going to ask you about Nottingham forest and what being a lifelong Nottingham forest fan has potentially taught you or you reflect on and now you talk about desire. So there's two things which come up there. One is obviously actually the interesting connections that I think football, particularly in this country can give people and community and those things. But then there is this flip side of obviously desire and want, which I see across all football fans, I'm kind of more moderate maybe because my dad was such a big football fan and a lot of my friends. But it seemed like an interesting segue on that is, are there any reflections on being a lifelong football fan there?
Dan Goodley (46:52): I mean, you could have used the term obviously long suffering, which would probably be better. I mean, I think being Nottingham forest fan captures perfectly the split subjectivity that I occupy, which is on one side deeply ableist, wanting success, achievement, glory and the reality, the other side, which is none of those things, but actually quite honestly the things when I think of this football club, it's all about community, it's all about admiration of my dad, it's about my identity, it's about a sense of belonging, even though I don't live there. And I think football is one example of the different kinds of communities that we all occupy whereby we find our moments of interconnection interdependence and quite frankly, new models of desire because if you're looking to feeling of failure, don't go to Nottingham for your football, frankly. I think that my relationship with a football team, they just capture that split personality that we all have. But I think it's more about actually these kind of different models of desire that kind of drives us and there's nothing quite like for me parking a car, walking with my dad [Inaudible:00:48:23], well, doing it for a long time now. And just that feeling of being around other clearly diluted people and that sense of togetherness and I think we all individually find it in different spaces. Don't we? Like [Inaudible:00:48:40] festival would be another one for me, a moment of real human connection.
Ben Yeoh (48:45): And it is that idea of connections that we desire which I think is one of the touch upon themes in this conversation. Perhaps two or three more questions to sort of finish off. One may be riffing on the sort of personal side. I think you say right near the start of the book that we often come to disability through a personal story of some sort and for me, it is through my son who I still believe has taught me more about what it is to be human and the human condition than I'd learnt in my previous decades and still does as he leads me into places in the world I definitely would had not have gone through myself. And you give a story, I think about your grandfather with some of that. So I'd be interested in your reflections on that if you'd like to share.
Dan Goodley (49:52): Yeah. I mean, I really loved your phrase there, leading you into places that you are not perhaps prepared for…I think that's a really lovely wording actually and it reminds me-- I've been very influenced by the work of people like Rod Macaco and Tanya [ ], who are disabled researchers, disabled writers who embrace their kind of philosophical viewpoint is kind of phenomenology or interpretivism and where they say, take your stories seriously to understand how you are being perhaps led into the world, or at least being in the world. And in writing the book, first, I wanted to write a book that was not aimed at academics. Secondly, my mother read every chapter of the book, which was really kind of her. My mom's not an academic, but she's a ferocious reader and I wanted her to check the readability of the book and I think hopefully she did a good job on that. I can't thank her enough for that. And in writing the book and kind of thinking about the ideas and the advice really, people like Rod Macaco, was to take our stories seriously. And my own really, disability was very much part of my growing up. My grandfather had had a stroke at a particular age and his voice was changing such that no one really could understand him apart from myself and my uncle who lived with him and I think, cause I was young when it happened, it was kind of quote unquote normal to me.
Dan Goodley (51:35): So I'd have this kind of pretty deep relationship with him cause I could understand what he was saying, but of course, as soon as he left the space of the house he was subjected to various kind of responses disabling responses to go back to what we were talking about earlier. I always remember I tended to be in kind of shops or outside fish and chip shops. Maybe that says a lot about what I did with my grandparents and just having that feeling of kind of, you know, like anyone does at an early age, just of anger and a visceral response to other people's response to members of your family who behave in ways that are just part of the makeup of your family. And so it came from that and I think alongside those family stories is the other area which really peaked my interest around disability, was doing a psychology degree and I was lucky enough to do a psychology qualification where I was taught by lots of radical psychologists Marxist, psychologist feminist, who really pushed me to think about what psychology did in the world, but alongside them, I was taught by a lot of what I would call mainstream psychologists who really presented disabilities, some really, really dangerous ways, really negative pathological ways.
Dan Goodley (53:05): And in fact, ways that were very similar to some other kind of moments of interaction in my family, in shops and it's kind of trying to work out what was going on here and I think those personal stories and that experience of being trained if you like in a particular discipline led me fortunately to the social model of disability where disabled people themselves were organizing their knowledge, which is counter to that really kind of negative and often violent response actually to disability and I might understand that as ableism or as disablism. But I think what is interesting about it is that most people will have had some personal experience of disability, whether disabled people themselves, or whether within their families and like any kind of experience of discrimination, which is what I used to experience with my grandparents, sometimes you have to-- it takes you a while to kind of find the language to understand that and luckily, fortunately now there is this, if you like this throwing into the mainstream of these alternative ideas of disability produced by disabled people themselves that do two things. One, they subject with these kind of medicalizing and individualizing stories to critique, but then at the same time they offer up alternatives and I'm sure you've had this feeling with your own son. Not only do you need the critical take on it, but you do need the alternatives cause quite honestly if you just sit with the reality of discrimination, it can be overwhelming.
Dan Goodley (55:06): Fortunately, disability activists themselves have created knowledge, which are not just utopian, nothing wrong with that, but they're actually practical, an alternative way of understanding the world. And so, being led into places that you perhaps not had in mind initially let's just hope one of those places that we're led into it is a way of understanding disability and the human condition in more productive, interdependent, more affirmative ways.
Ben Yeoh (55:39): Yeah, I think so and you raised that point at the end about these alternatives and I think thankfully there are some, like you say, often produced by disability people or other thinkers. Very tangentially, I see this a little bit with climate activists or activists-- Well, there are some climate people who are despondent about the alternatives and therefore are not as energized as they could be. Whereas the ones I meet who are pushing on alternatives, and I think there are a variety that you could choose are energized to change the world or be that part of the world. So, this is one of the things that I try and talk about is that there are these alternatives and a variety of alternatives, but all of this intersectional stuff that we've talked about, and sometimes you are led there, sometimes you might have to go and try and find it, but you can and that will make, I suggest one be more fulfilled or at least feel that you can do something. And I think that's very interesting thinking about your own work, cause I picked up that you, how would I put it, co-produced research often with disability thinkers as well. So maybe as my second last question, I'd say then maybe tell me about your current research, what you are interested in and maybe some of the process that you are doing with sort of co-producing research and how that works.
Dan Goodley (57:24): Yeah. I think that co-production has become a really popular term across policy, across research, across various stages. I mean, hopefully our understanding of this and hopefully our practice is about starting with an assumption and the assumption is that disabled people are not passive objects of inquiry. It sounds again, when you say it you think, well, yeah and what's the obvious statement … this morning, but you know, let's be frank, there are industries of research, there are disciplines across universities whereby disability is ubiquitous, but it's ubiquitous as a kind of passive object of inquiry. Co-Production, hopefully works from the position that disability is the driving subject of inquiry and that disabled people can occupy positions of being theorists, theoretical provocateurs, methodologists, researchers, analysts, co-writers, co-authors. So this is about it's been an argument from social model writers for many years, is what used to be called emancipatory disability research, is that research should be driven by disabled people in collaboration with researchers to identify matters in their lives are important, and to come up with particular changes that improve their lives. So, what I think is interesting again is how often disability is not mentioned, how there's a whole history of disability researchers that are ignored that have been arguing for this kind of more emancipatory model for many, many years.
Dan Goodley (59:29): So, co-production knowledge is, again, sort of picking up on some of the things, again, we've been talking about today which is around interdependence, working together and hopefully challenging some of the hierarchies that exist between the so-called researcher or the researcher and the researched. And so we've finished a project with Lydiard and Catherine [ ] and Sally Whitney and other researchers who've explored together particular researching ideas whereby we try to create opportunities for working together, writing together and to be fair to research funders and to university settings co-production is becoming a lot more kind of promoted and definitely kind of more desired as in a model of research. One thing that we do need to take seriously, however, is that within the university settings, disabled researchers are conspicuous by their absence disabled researchers are not coming through university contests. When we work alongside non university researchers or disabled people's organizations, we must ensure that they are probably funded, not just remunerated funded and I would suggest it's kind of a bit of a current [theme] is the idea of experts by experience, which is a term used a lot at the moment.
Dan Goodley (01:01:08): Let's be very careful of that term, cause it seems to me the term experts by experience is being used by researchers and practitioners and policy makers to essentially bring in some people to offer their stories and their opinions and not to be properly recognized, nor properly paid for that kind of work. So hopefully we start a debate there around co-production challenging some of the kind of distinctions between the researcher and the researched, the academy and those outside of the academy and ensuring that we are working with interdependent models, collaboration that's not just value people for their expertise, but also ensure that they are funded properly.
Ben Yeoh (01:01:56): Okay. That makes a lot of sense. I'm very far away from academic circles. I'd never heard of this idea of experts by experience, but the way you describe it I worry a little bit if that's an excuse to get some people in and not pay them, but that I referenced right at the beginning of the conversation about always being slightly worried by words or jargon because it's used as a cover of like, oh, that would be useful, but let's not--
Dan Goodley (01:02:24): I think it is. I agree. I think it is. I think it's being used in many cases as a box ticket exercise and what really is offencing about the idea of the expert by experience is it ignores the fact that there are many disabled researchers out there that might are not working in universities, but for example, self-advocacy groups or parent organizations who know their stuff, who are carrying out research, have done research for many years and they're not experts by experience, they are researchers.
Ben Yeoh (01:03:06): Yeah. So this is this notion of, what would I call it, independent research. I mean, they're just researchers, they're just not within an academic institution. So we help run a group called transport sparks for autistic young people who are interested in transport and actually that group as a community group has actually a lot of quote unquote research to offer but we wouldn't view it as research, right? It's the way that we interact with world and also interact with institutions and organizations and this other systemic framework, which I think is really really interesting and how for instance museum spaces have only, I think relatively recently tried to really grapple with this and actually still do it fairly poorly, even though they're trying to reach out to some of these groups, which I think is really interesting and that is some of this I idea of who's got the power of research, ableism, disablism and these things. But some of it seems to me that actually people are just not listening carefully enough or they could just listen a bit more carefully and they probably would then hear some of these things, which people are saying for a while.
Ben Yeoh (01:04:25): So last question then would be do you have any advice really or advice for people? I guess this could come in two or three flavors. One would maybe be life advice or advice if you are interested in doing kind of research or things. But another thing might be just simply advice or thoughts if you wanted to explore this area or any reflections that you might have for instance, this might be advice or thoughts you've had from having followed your football team for so long that's probably taught you quite a few things as well, which you might want to share. So yeah, any final thoughts on advice for life or advice for people.
Dan Goodley (01:05:10): Oh dear. I'm not sure you want to take any advice from a Nottingham forest fan. I suppose it's a very simple point, but it's something that I think often gets ignored is when you are interested in a phenomenon in life but that phenomenon in life has historically been understood as a passive objective study, then we need to really question and challenge that. And it seems to me that if one thinks across a variety of transformative or political context, they've come about, they've been transformed when the objects have become the subjects, have been driving the kind of inquiry, driving the kind of questions and conversations that would be had. So for me, in terms of the place of disability, the starting point always has to be disabled people themselves and to recognize that doesn't matter what the industry of psychology, for example, might have to say about disability, there's a huge body of literature written by disabled people and their allies that has as much or more to say about the phenomenon than those so-called expert disciplines. So, yeah, move from the object and embrace the subject would be my advice.
Ben Yeoh (01:06:50): Move from the object to embrace the subject. That's a great final phrase to leave with us. So Dan Goodley thank you very much. Your book, Disability and Other Human Questions is available, please do go and read it. Thank you very much.
Dan Goodley (01:07:08): Thanks, Ben. Thank you very much.
