This is a transcription of the Disability Equity episode of the Sensational Shorts podcast, produced and recorded by Dr Charlotte Slark featuring a special guest host, Kyle Lewis Jordan
Audio
Speaker vocal descriptions
Charlotte speaks animatedly and talks faster when she’s excited. She has a southern English accent, which a local person would identify as a somewhat polished combination of Slough and Staines upon Thames (think quite hard consonants!). It’s the accent of someone from a working-class background who has spent a lot of time having to fit-in in middle class spaces.
Kyle speaks in a calm and confident tone of voice, his words becoming softer and clearer as he settles into the conversation. He becomes more upbeat and employs emphasis when drawing attention to key concepts and ideas. He has a fairly standardised British accent, described by his friends as “The right amount of posh”; “clever, but not self-important”; “Direct impact, but not like a bell, more like timber”.
Notes on transcript style
- Punctuation is used to indicate the way the content was delivered, rather than necessarily being grammatically correct. Please try and read it with these pauses (or not as the case may be) in mind.
- Words in square brackets and in italics, [like this], indicate delivery types (e.g. softly; animated), audible occurrences (e.g. laugh; sigh), and sound differences (e.g. quieter delivery) in the recording.
- Ellipses (like… this) indicate a short break between sentences.
- Italicised words (like this) indicate emphasis placed more heavily on the words as they are delivered.
- Quotation marks (“like this”) mean we are suggesting this is something someone might have said (e.g., she said, “oh, that was weird”, and I could see why)
- Whereas quotation marks (‘like this’) mean we are emphasising it as a useful term (e.g. ‘the fourth wall’).
Transcript
[The podcast starts with The Sensational Museum audio logo: A conspiratorial female voice says ‘The Sensational Museum’. Lower in volume, almost distant, people are chattering excitedly in a large, echoey space. A warm, major chord chimes and fades out]
Charlotte 00:06
Welcome to this Sensational Shorts podcast on Disability Equity. I’m Charlotte Slark, and I’m here with our special guest host Kyle Lewis Jordan, who is a young curator and archeologist specialising in Egyptology, who has recently completed a fellowship with the Curating for Change project with the Ashmolean and Pitt Rivers Museum in Oxford. Hi Kyle.
Kyle 00:20
Hi Charlotte. Hi everyone. Lovely to be here.
Charlotte 00:23
Thank you for joining us. So we always start with visual descriptions, so I can go first. I am a white woman in my 30s with blonde curly hair that’s tied up into a bun. I’m wearing blue, plastic framed glasses and a blue stripy top. How about you, Kyle?
Kyle 00:39
I am a young white man in his late 20s. I’ve currently got dyed, blonde hair and a rather scraggly goatee, [slightly sheepishly] which he promises he will shave. I’m wearing black metal framed glasses, I usually sit in a manual wheelchair that I’m in my desk chair today. Because I am a disabled person. And I’m currently wearing a black, long sleeve top that in neon writing says “I’m a freak for accessibility”, [clearly amused] which I think is very apt for today’s conversation [does a barely audible chuckle].
Charlotte 01:11
That is a perfect t-shirt!
Kyle 01:13
Yes! [Charlotte laughs]
Charlotte 01:14
So, I wanted to start with why we’ve chosen to make this podcast about disability equity rather than awareness. So, what are your thoughts on this Kyle?
Kyle 01:22
Well, that’s a really, great place to start, and that has really come from the workshops that we worked on together as part of creating the toolkit. And the conversation around disability equity as opposed to awareness, is because awareness is just being conscious of something which, while good, is only really a subtle thing. It’s something that, so long as it’s there, you just carry on. But equity is about making an active choice to say, “okay, I now know this. Now, what am I going to do about it in order to make things more equal and more accessible?” So it’s a much more proactive sentiment. It’s not just about thinking about disability as being there and being present. It’s about, how do we actively include disabled people and empower disabled people to have an active say in what our work is about? So that is really the sentiment behind saying disability equity as opposed to awareness.
Charlotte 02:18
That’s a really, good explanation of it. And really sets out what we’re trying to do with this project in general, is it’s not about awareness, it is about equity, deep at its heart. Another key term I think we need to, unpick is the difference between ableism and disablism. And now I remember you explained this really well in our workshop, Kyle. [Kyle hums in agreement]
Kyle 02:39
Well, for a lot of people, ableism and disablism can be one and the same. So these aren’t strict definitions in that there is a definitive difference. But for some people, it’s important to distinguish the two, because ableism is that sort of unconscious bias that you will have against the disabled person because of the ways in which our society, by its structure, by its social conditioning, leads us to see Deaf, disabled and neurodivergent people as, something that is against the grain, doesn’t integrate with the norms that we established for ourselves and how, bodies and minds are supposed to behave. So it’s not something that necessarily comes from a place of malice, initially, but it’s something that is learned, as in you come to believe that that’s the case, it’s just in the background saying, “oh, you know, well, of course, Kyle, as a manual wheelchair user, is going to be, slower because he’s in a wheelchair. He can’t walk, so innately, he’s going to be slower” rather than questioning, well, of course, I’m going to be slower because I’m having to navigate a built environment that doesn’t consider my needs. That’s ableism, at least, how I would define ableism. So, it’s that unconscious, learned bias that just exists innately within society as it currently stands.
Disableism, by contrast, is a more, going back to equity, it’s almost like the antithesis of that. It’s the, the innate belief that someone who is disabled, or defined as disabled, is inherently lesser than someone who isn’t, and takes a very prejudiced stance to say that, and, therefore looks at any contribution or, inclusion of said persons as a deficiency or as something of a lackingness. So very often, when you look at historical material, for example, within archives, especially of the 19th and 20th centuries, I would argue what you are reading is not just ableism, it’s active disablism. To say that these people should be institutionalised, to say that these people should be sterilised, all this horrible rhetoric that exist and still exists unfortunately, in some circles. So that is the distinction there. And I think that’s really critical to think about, not only in your own attitudes as professionals and as people, but also in the material that you’re working with, particularly in archives and in galleries and in museums, where, a lot of this thought was created, was nurtured almost, by the study of historical objects to, respond to contemporary trends and attitudes of the time when they were first excavated and coming right into the present day, this idea of the body perfect as just one example.
You know, we think of the classical sculpture, or the classical beauty, and how very often that has been reinforced as this idea of the beauty standard that, people in the past, or even people today, ought to live up to, when, in reality, those objects exist in their own medium and weren’t used that way, and have now been twisted in that way to facilitate one’s own philosophical argument, which again, historically included a lot of disablist rhetoric. So I’ve kind of spun off a bit there, but hopefully that makes sense, the distinction between the two and how one is very structural, and again, in the background. But there is also the very proactive prejudice against disabled people that is disablism, which one ought to be mindful of, both contemporarily, but also within the archive.
Charlotte 06:10
That’s a really good explanation. And, I think it’s really also important to point out that, often ableism is coming from a eugenics background [Kyle hums in agreement]. So a lot of this active disablism that you’ve described, has led to a lot of the ableism, that people encounter today. So again, this idea of the “body perfect” or this idea of society providing for an ideal standard that just doesn’t exist [Kyle hums in agreement]. Which, in a way, brings us quite nicely onto the different models of disability [Kyle hums in agreement]. So, often museums tend to, as a default, and not just museums, I think society in general can fall back on what we call the medical model of disability. What is the medical model Kyle?
Kyle 06:58
Hmm. So the medical model of disability is the idea that someone’s disablement, their condition of being a disabled person, is innate to their physical or mental condition, the diagnosis of the condition. So for example, with myself, as a manual wheelchair user who has cerebral palsy, my experience of disablement, of not being able to access certain spaces because of how they’re built or things like that, is innately on me as a person to say, “well, of course, you can’t access this space that only has steps to it because you can’t walk”. It’s to say that is just the, the quote, unquote “nature of things”. And again, as you mentioned, bleeds from this rather eugenicist worldview that says, “Oh well, you know, social Darwinistic survival of the fittest”, which is a complete corruption of what that even meant, originally in Darwin’s own thinking, but that’s another tangent! But the point is, is that it’s seen as something that is innate to the person and is unchangeable, unfixable, and can only be managed through medical intervention.
The medical model is based on this mythology of the body perfect in a very philosophical way. And that is that, you know, historically disablist and contemporarily ableist background, that a lot of people are raised to see. So that is what we actively have to dismantle and fight against.
Charlotte 08:19
So, if the medical model is based on the idea that there is something inherently wrong with the person, what is the social model?
Kyle 08:28
So, the social model, by contrast, so to give you a bit of history here, we’ve talked a little bit already about the medical model and how that was couched in very eugenicist, disablist terms. And those disablist and eugenicist ideas developed in the context of the Industrial Revolution. This is when all of our bodies, and minds by extension, were basically rated on a scale of capacity and capability. You had to be able to work and to function, in society to a certain standard in order to contribute to that model of continuous economic growth. If you couldn’t do that, then you were, you were “disabled”, you were “ineffective to the model”. And this goes back to what we were saying about ableism, disablism. Learning Disability is another classification that, prior to the Industrial Revolution, didn’t really exist in the same terms, but then was coined, because when standardised teaching came in, this factory rote learning came in, people who we would describe as learning disability couldn’t fit within that mould, and so were then taken to one side, and that’s where the dark history of institutionalisation really takes steam, because they were basically seen as not economically productive, and therefore were taken away, from society, removed quite literally, quite violently. So that’s where the medical model comes from, its historical context.
Going farther forward into the 70s and 80s, the, more recently, disability rights activists were campaigning for greater protection and anti-discrimination laws for disabled people. And in the process of those grassroots campaigns across places like the United Kingdom and the United States and various other places all over the world, disabled people were coming together and started to discuss, well, “how do we actually think of disablement today?” And it was through activists like those among them, a man named Michael Oliver who ended up writing a book titled “The politics of disablement”, who, from those collective conversations, so it’s important to stress this was not the work of just one person. It was a collective group of conversations that happened over decades that ended up coining what we refer to as the social model. So the social model of disability is almost a response to this structural disablism that we’ve discussed. This medical model thinking, and openly rejects it, and does so by pointing out the fact that this is a structural choice. It is a choice to classify people by their capacity and capability. It is a choice to say that someone who isn’t being economically productive is therefore not being valuable to society, and that has many kind of contemporary meanings today, let alone historically. And so, the social model is a rejection of that, and says, you know how I said earlier, the example I gave of my disablement as someone with cerebral palsy, and the medical models thinking that is someone, that is innate to me because I can’t use the steps, because I can’t walk, the social model says I am made disabled by the fact that they built [chuckles derisively] a building that did not consider someone who couldn’t walk. And that anyone who says, I can’t use a space because, because it’s built that way, is in a sense, the ones doing the disablement. So it’s no longer innate to the individual. It is something that is societal, and something that a group of people decides that you are disabled. And so it is structural, and it’s something that can and should be dismantled through proactive equity. And it comes back around to what we were saying. It’s a tool, essentially, the social model is a tool by which to dismantle the medical model. It is proactive. It is not, I think it’s worth stressing as well, all encompassing, because it was never meant to be. It was always meant as a tool specifically to respond to that nature of societal disablement, and to help us rationalise and deconstruct those forms of ableism and disablism that are inherent to our ways of life, and to think of better ways of doing that. And this maybe goes on to our next bit with the radical model, but I stress that because a lot of disabled rights groups, even today end up in these quagmires of arguments of well, “which model is right for us?” And that’s natural. It’s how groups come to these conclusions, and again, like I stressed, historically, it’s how the social model itself was developed. But I think it’s worth always remembering that these things were never meant to well, the social model in particular, was never meant to be all encompassing and Michael Oliver himself in later work, stressed this, that it was never meant to define all aspects of disability, but in the particular aspects of how it affects our integration or dis-integration with everyday society, that that is where it has the most utility to which I think it still stands very true today and probably will for some time. That in sum, is the social model.
Charlotte 13:15
So the social model, then, at its heart, is about society, being the force that disables people [Kyle hums in agreement]. And like you say, I think it’s important to acknowledge that not every disabled person identifies with the social model [Kyle hums in agreement]. However, it’s much better suited than the medical model in many respects [Kyle hums in agreement], and certainly has much more room for intersectionality…
Kyle 13.36
Yes
Charlotte 13:36
…in a way that the medical model definitely doesn’t.
Kyle 13:38
Yea, no 100%
Charlotte 13:29
So you mentioned the radical model, [Kyle hums in agreement] when you were talking there. What is the radical model? And how does that go further?
Kyle 13:47
So the radical model? Well, this is interesting ‘cause, as I said, it’s a very active, ongoing conversation. So some people refer to it as the radical model. Some people refer to it as what’s called the cultural model of disability. It comes from a variety of names, and that’s because it’s still very proactively, I think, whereas I was saying, you know, the social model was developed over the course of a few decades, I think we are in the time where we are also, over the course of a few decades, developing even newer ideas. Especially because going back to history again, so we had our industrial revolution, medicalised model of disability kind of instituted there, come forward a few 100 years in the 70s and 80s, we’re having the social model, it’s couched and developed and kind of carries on forward from there, in the decades that follow, that in particularly the 90s and the early noughties, you have this kind of expansion of what becomes referred to as “Disability Studies”. So this is a kind of a derivative of sociology, to study the effects of disablement in various offshoots of society. So that could be looking at, architecture, that can be looking at employment rights and laws and things like that. So, very sociological in that sense. And along the same strand, almost branching off of that, you get what’s called Critical Disability Studies. So Critical Disability Studies is much the same content in essence, but is actually taking it one step further, particularly because Critical Disability Studies values experience by lived experience. So what I mean by that is that instead of just being your very traditional academic root, critical disability studies, the very nature of studying disability is led by being disabled and learning from that embodied experience, and that feeds into what we often refer to as the radical model. Because the radical model is, not just about looking at how structures, and society can disable someone, but is also thinking about the ways in which the embodied experience of being a disabled person, that is that day to day, lived experience that you have fundamentally shapes your interaction with all these things around you, and so, something that is intrinsic to the lived experience of being disabled, that no matter when, and I do believe there will come a day when we can dismantle all these social barriers that exist as identified by the social model, the lived experience of disability as an innate thing to both individuals, but also in our wider communal context, so the communal experience of say, Deaf culture, for example, or the communal experience of disability, not just activism, but also community care, for example, how those things shape culture. So it’s not just something that is being done to disabled people, it’s something that disabled people are creating themselves, living and breathing every single day. So this is a frame of thinking about disability, not just as a sociological experience, something that is structural, but something that is, cultural and innate and comes from so many different contexts, because, of course, the impairments that make us disability have existed across human societies and cultures since human beings have existed. That is proven In the archaeological record and in our evolutionary history. So it’s about looking in and understanding how those things have shaped human society as a whole, and how disabled lives play a rather proactive part in that, and thinking about, not only that history in the present, but also the future that that holds, for disabled people and society at large. The broader inclusion of disabled people through the application of the social model, leads to this radical model of radically rethinking the ways in which we live and work and do, things really.
Charlotte 17:34
So I guess the important thing to take away here is that, no one model is necessarily enough. We know, we know we want to get away from the medical model, that doesn’t serve and while the social model is really good start actually, we want to understand that this doesn’t necessarily work for everybody. So, so museums need to make sure they’re not defaulting to that medical model [rising up at the end of this statement almost like a question while Kyle hums in agreement], but they also need to be aware that, the social model isn’t a perfect replacement.
Kyle 17:59
Yeah, I think it’s about understanding that, as an institution, as a structure, the social model is going to be very applicable. So it’s about asking that question of how you have or you haven’t, in some cases, included disabled voices in your institution and how those barriers have been created by the nature of the work itself. So it’s about looking at your institution from a social model lens, to see the ways in which you have, either unconsciously in the case of ableism, or perhaps historically, unfortunately, which will be the case in some instances, rather consciously excluded those disabled voices. And so coming around to disability equity, how you can address that today, utilising the resources that The Sensational Museum is putting out there to assist with co-production, that’s because it’s about recognising those barriers, both physical, but also philosophically you know, that have been instituted within the discipline to see how you can break those down. But as you were saying, Charlotte, it’s also important to realise how for a person’s embodied, lived experience, not all disabled people are one and the same. No group of people, any group of people, is monolithic. That’s one of the natures of being human. We all innately know this. But sometimes we can be prone to forgetting that, and especially when talking about groups of people in these demographic ways, we can forget that, while it is broadly true, I think, especially in the in the context of the United Kingdom, that the social model is broadly accepted among disabled people and disabled rights groups in particular, especially because of its historical context of developing within the United Kingdom, it’s certainly not again, something that all disabled people will relate to, especially when it comes more to their lived experience. So that when you are working with these groups in a co-productive method, it’s important to also make sure that they have the space and the power of the space to say, well, actually, we want to take this in a slightly different direction. And the beautiful thing about that is that by doing it through that method, you are continuing that tradition of exactly how the social model was started, and exactly how the radical model has come about and will continue to develop, through giving them the free space to continue to develop those ideas, and in doing so, you are bringing a radical new approach to how, not only we look at the artefacts that are in your collection, but also the ways in which we think about disability today and the ways that could possibly go forward.
I guess what I would want people to take away from this in thinking about why it’s relevant to them, is it’s not just about changing your contemporary attitudes, it’s about what role museums can play in being sites for this new idea. And that’s the beautiful thing. I’m very passionately a believer that museums have all the capacity to be sites of social change, and growth especially because studies have shown time and time again that they are one of the most trusted spaces by the public for new ideas. So I think it’s about time that we actually radically embrace that and show how we can do that through community participation and co-production.
Charlotte 21:01
I think that was a really good call to arms for how museums can really take advantage of their, status as, drivers of social change. Thank you so much. Kyle for joining us for this Sensational Short.
Kyle 21:21
Thank you!
Charlotte 21:23
I have been Charlotte Slark.
Kyle 21:26
I have been Kyle Lewis Jordan.
Charlotte 21:28
And thank you for listening to this Sensational Short Podcast.
[The podcast ends with The Sensational Museum audio logo. A conspiratorial female voice says ‘The Sensational Museum’. Lower in volume, almost distant, people are chattering excitedly in a large, echoey space. A warm, major chord chimes and fades out]