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ALIDA: Welcome to the Care Work Podcast. I’m your host, Alida Miranda-Wolff. This podcast is for anyone in the business of providing care. Whether you’re being paid for it or not, you’ll discover what it means to offer care and how to take care of yourself in the process. For the last ten years, as a diversity, equity, inclusion and belonging practitioner, a care worker myself, I’ve focused on providing care to other people for a living. Now with this podcast, I’m hoping to create a culture of care in my community and help you do the same in yours.
I am tearing myself away from the sequel to Fourth Wing, Iron Flame. As many know, the New York Times best selling romantasy in order to record this podcast episode,
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and I want listeners to understand how much I care for you because I am so close to finishing and I took a break from it to revisit one of my all time favorite books on disability and architecture and design. What Can A Body Do? by Sarah Hendren in addition to starting to record this episode, instead of seeing what’s about to happen so that I could meaningfully talk about disability justice in a way that would be helpful, and I have to tell you, it’s not easy. My toddler is going to be home soon, and there will not be book time, at least not romantasy book time. They’ll be reading and re-reading the same book called, Potty, until he falls Asleep. So I care about you, and this is important. And what we’re going to be talking about in this minisode is essentially the arc that we’re coming out of on disability justice. I had the privilege of talking with Lauren Schrero Levy María Emilia Lasso de la Vega, Tim Villegas, and also, frankly, Ken Bigger, who talked more about educational equity and literacy, but ultimately created a really strong bridge between those two arcs. I’ve been reflecting on those episodes on disability, and one of the key ideas that came back for me was of stigma, specifically with Lauren and Tim. They’re talking about classroom settings and institutional settings where there is segregation, separation, a lack of choices for people with disabilities of all kinds, although both of them mostly gave examples of people with intellectual disabilities, children with intellectual disabilities. And María Emilia was really talking about eliminating stigma as an advocate for students by creating environments that anticipate accessibility needs. So I figure the best place to start on this arc is with stigma. What is it? Why does it matter when we talk about disability justice? So I’m a stickler for the original literature, which means when I go and I define stigma, I go all the way back to Goffman in the 1960s. And my definition is, stigma is the situation of the individual who is disqualified from full social acceptance. In other words, you can be stigmatized for just about anything. The point is that you are contextually disqualified from being part of the larger group. And so that might be on the basis of your beliefs, your values, your identities. There is a direct relationship between stigma and inconvenience. I believe that we stigmatize identities on the basis of how inconvenient they are to us. And yes, I am very much drawing from Lauren Berlant’s, work on inconvenience when I say this. And I would just highlight her last book she wrote before she passed away, The Inconvenience Of Other People, goes into this much more in depth than I will. But ultimately, we disqualify people from full social acceptance. Because they are inconvenient to us. And in Berlant’s telling, she writes in her book that historically subordinated populations. Are deemed inconvenient to the privileged who made them subordinated. So the subordinated are cast as a problem experience themselves. And that is, both them being inconvenient is necessary for the privileged or dominant group to be privileged and dominant. But they also, in that position of subordination, create an inconvenience for those privileged or dominant people. So it’s kind of this circularity here of inconvenience and subordination, because your inconvenience is a result of your subordination. But I’m going to just break it down into slightly simpler terms. So when we look at disability and disability justice, why do we even need a modern form of disability justice today? I have to go back and blame the Victorians, and I’m going to talk a little bit about intellectual disability here. So in the Victorian era, we have rapid industrialization. We have people crowding into cities. We have poverty at a level that’s not really been experienced in this way before. And we have that coinciding with the era of, you know Rudyard Kipling’s, The White Man’s Burden. And this new form of thinking that takes Darwin’s natural selection. And puts it into a social and political frame. Who is socially fit? Only the strongest can survive. And we’ve just got a wound up, western educated, industrialized, rich, developed group ruling class that is afraid. The people that they have made inconvenient are too many. They feel outnumbered and overpowered. And this shows up in a lot of ways, right? This shows up in stories of colonization. And really casting the people in the global south that have experienced the colonization of the British in particular, as being inferior and socially unfit. But it shows up at home, too, especially where poverty is flourishing and inequality is just widening and widening.
So what happens is that there is a realization that there are a lot of people with intellectual disabilities. And in the past, these people were sort of kept within family structures or in what was known as almshouses and potentially also in prisons. And what happened is because of this push towards Social Darwinism, this fear about losing out or no longer being the dominant race in this globalized system, is that we have a pathology tied to intellectual disability that didn’t necessarily exist before. So I have to use a term that I don’t like, but it’s what the history books use during this time it’s not called intellectual disability. It’s called idiocy. And idiocy was originally seen as basically a benign problem, something that you would feel sorry for people’s families for having to deal with. But now it’s a social threat because there’s this link between intellectual deficiency and physical deficiency, moral deficiency, and it’s all being cast as the problem of the poor, because something like intellectual disability, god forbid, would never exist in wealthy homes in the lives of the middle class. And if it did, we’d want to keep that hidden, right? And so the birth of our modern institutionalized asylum system comes from this complex web. And I think this is important to have, because in our episode where Lauren and I are talking about people with intellectual disabilities from in the classroom to in institutions now as adults, she talks about the fact that special education wasn’t even a thing until a few decades ago, that these kids weren’t offered any kind of education, that the fact that there would be advocates for adults and institutions was relatively new. And so I think it’s important to understand that our entire modern system for treating, caring for, medicalizing, institutionalizing people with intellectual disabilities, is rooted in this pretty dark period of history that is characterized by a very strong attachment to supremacy and supremacist happiness. So if I am living in the Victoria era, I am both privileged by not having to take care of you, person with intellectual disabilities, who I have not designed society for. I’ve designed society to fit my needs, to be accessible to my needs, and to support my goals, which, in part, has made you more subordinated as a person with intellectual disabilities. But now I also have to deal with the fact that nothing works for you, and you’re still in my space, and so you’re an inconvenience to me, which then leads to this circle of more and more stigma. To just get at how much this is a Victorian problem that seeps into the modern day. I want to point out something from Sarah Hendren’s, What Can A Body Do?, that I hadn’t thought about really, since the book came out and I read it and just caught my attention. I’m going to read the quote directly because I think it’s so useful here. “This familiar comparative idea of normal is so common that perhaps it feels timeless and universal. But it wasn’t until 1840 that the word was even used to describe human qualities in European languages. Prior to that time, normal referred to being perpendicular or square, a technical term that would have been used, for example, by a carpenter.” So viewing the body, the disabled body, the non-disabled body, the body in any form, as something comparable to another body, in terms of it being normal, is really akin to viewing the body as somehow inanimate. And it just always brings me back to, by the way, one of the best book titles ever, if you’re looking to add something fun to your reading list, Heather Radke wrote a book called, Butts, a Backstory. Tell me that isn’t amazing. And, uh, it reminds me of the fact that she has this whole chapter on jeans, and that it’s basically impossible for anyone to find a pair of jeans that look and feel good, even if the person who is trying on those jeans is the same weight and height as the original model. Because the way that the flesh is distributed on a person is different. There are no two bodies that are exactly alike. We really can’t compare two human bodies in the same way that we do, as two identical four by fours. But the language that we have and the structure that we have, which you know, we’re coming back to pre Victorian, to Victorian era, makes that happen. So when we think about disability justice, we’ve got a whole lot of things going on.
One, we have the creation of disability as, uh, something that’s really tied to, in many ways, social control and keeping social control through stigma and through the weaponization of this concept of inconvenience. But we also have a big problem and I think that this is something that all of my guests talked about in some way, which is, to be human is to eventually be disabled in some way. It’s universal. You might be temporarily disabled. It might simply be part of the aging process. But whether we’re thinking about intellectual disabilities, or being deaf or low vision, or even needing memory care in your older years, disability is pretty universal and something to be, you know, something that Hendren points out is that offering and accepting forms of help is not really a mechanical, zero sum, um, exchange dependency. And the care it requires may actually be how we define disability. That might actually be what disability is. How dependent are we on others and on the care of others that isn’t maybe readily available or designed into the way we do things. So what could be more fundamental than that of needing other people, of being dependent on other people? At the same time she emphasizes that scholars in this field note that nondisabled people perpetually go to great intellectual and emotional lengths to distance their own bodies from the experience of disability in others. She goes on to write, “the disabled body is imagined not as the universal consequence of living an embodied life, but rather as an alien condition”. And I know that now I’m just emphasizing my point over and over again. But this is the central piece that I think lays the foundation for why we need to reconsider how we’re addressing disability, not just in terms of ameliorating side effects, of making sure that our segregated classrooms are evenly resourced, but rather, as Tim Villegas emphasized, planning a classroom that is integrated and that is successfully integrated, where there is a lot of different types of learning happening at once. But in order to do that, we have to accept that we, as people could, at any point in this system of subordination and inconvenience, switch places. And that’s where the fear comes in. There is real stigma associated with being disabled. And the fear of social rejection, of not being part of the social group really pushes for this partitioning of space, keeping the inconvenient, keeping the subordinated, keeping those we see as disabled apart. So we don’t have to face the fact that we could lose the privilege that we have today at any time. So if we can overcome that, which listeners, you figure that out and make the world a peaceful, wonderful place. In the meantime, it makes it a lot easier to invest in things like assistive technology and universal design. And I loved recording with María Emilia because she had so many examples of how, as someone working in higher education, she was able to create an environment for her students that really lived into the seven principles of universal design. And she went into those principles really in depth. But I think the point that she made was, if we just stop assuming that the baseline is this sort of normal picture, knowing that normal may not mean what we think it means, especially given the historical context, what does it look like to use our stuff to give us help. And Hendren gives a lot of examples in her book of how people who don’t have disabilities use ordinary objects in ways that make them assistive technologies. So when you are using glasses, a knife and a fork, chopsticks, if you are taking a hike and you use a walking stick, if instead of throwing a ball for your dog with your arm, you use a plastic arm. These are all assistive technologies. These are all extensions of ourselves. These are all, in some ways, prosthetics, ways that we can do more in the world with the bodies that we have. And we use these things whether or not we have disabilities or not. But the ones that we choose to focus on as inconvenient or negative are the ones that are associated with that othered group, that subordinated group, as opposed to saying, again, how do we just design the world around us in a way that makes navigating the world easier for the many different types of bodies that exist? And again, stealing from Hendren, I had my own example for this episode, and then I was going through my notes from this book to record and was like, well, this is why she wrote a book about it. And I didn’t, although, plug my second book The First Time Manager DEI is coming out on May 7. But I did not write a book on this. Sarah Hendren did. And the point that she brings up is so good. The Television Decoder Circuitry act of 1990 is a way that we have legislated universal design. It was very hard to do. There was really a battle to pass the legislation, and there was a protracted debate in the face of resistance from professionals from the communications industry who said that basically the disability activists who are saying, we need to build closed captioning technology into every standard television. We don’t want to do that. It’s too expensive. No.
But ultimately, the legislation went through, and because the legislation went through, it created economies of scale that actually made the cost of adding this capacity to television so small that now no one can calculate it. It basically isn’t even a cost. And so closed captioning is in every television, and it’s because of this legislation and what these activists fought for. And it’s something that is now enjoyed and used by people who are using it in different contexts and don’t necessarily have a disability related to needing captioning, like being deaf or hard of hearing. You know, when you are sitting at your airport terminal waiting for your gate to open, and you are reading the news via CNN playing in the background, you can thank disability activists for that. I find it interesting how much advocacy and activism was necessary to get this legislation through for something that ultimately is a widespread social benefit and was relatively cheap and easy to do.
So the resistance to change here in this example was really rooted in a mindset problem and a stigma problem. The explicit problem that was noted is there just aren’t enough people who need closed captioning for this to be our problem. That’s what the communications industry is saying here in 1990. This is an undue burden, given who our customer and our market are. But the implicit piece here is that the people who are asking for this, we don’t want to make things for them because we don’t want them. Because we don’t want to include them in our design discussions, in our manufacturing, in the cost of what it is we’re building. They’re not our market. Because if you are a disabled person who needs closed captioning, you probably aren’t economically in a place to buy our products and not our target market, which doesn’t that sound really familiar? It should from this episode, because wasn’t that the argument from Victorians who said that because, Social Darwinism, we are seeing people with intellectual disabilities, idiocy, giant air quotes, as I say that in poor areas and not anywhere else, it’s their own moral failing, it’s their own physical and spiritual failing. So we need to lock them up in asylums and prisons and institutions. We don’t want to see them. We don’t, therefore, build things for them outside of those very enclosed, very contained spaces. For me, there’s a direct link between these two things.
So as you’re listening to me, you might be thinking to yourself, wow, but those episodes on disability justice that you recorded, Alida, were so hopeful and optimistic. And what you’re saying right now is a real bummer. And so what I’ll say in response to that is twofold. The first is the legislation passed. It is an example of how, with a real tenacity and fervor, activists and advocates can introduce changes that overall benefit many, many people, especially the people who are being left out of the design of the world around them. And the second is because after listening to the raw edits of these episodes and listening to Lauren’s suggestions for change, Tim’s suggestions for change, María Emilia’s suggestions for change, I mean, there are so many really good examples there, and I just can hear in my mind this voicing, but it’s too much work. But really, are there that many people who need this? Sure, integrated classrooms sound great, but a teacher spending extra time trying to figure out how to teach students who are neurotypical and neurodivergent is time they don’t need to be spending. Because why do we need to be training teachers to develop these kinds of methods and tools and practices if there’s only one or two neurodivergent students? And is it really worthwhile? That implicit is, what are these people going to contribute in the end anyway? Is it really worth the return on investment? I mean that’s what I see as the underlying problem, is that mindset, or even thinking about all of the things María Emilia put in place in her various leadership roles to create more universally designed spaces. I can just hear folks in my head saying, setting up a chair so that folks can choose whether or not to make eye contact with me, making sure that I have sensory toys on my desk, making sure that my monitor spins around so they can see and read as we talk.
These are inconveniences to me. And how important are they, really? And I think part of this is just coming from me reflecting on a keynote that I gave last year with another person who said that they were here for the inclusion and promoting inclusion, and basically said that the trans bathroom issue, which, by the way, ever go into a, uh, diversity, equity, inclusion and belonging conference and have someone say, trans bathroom issue, it’s a red flag, should not be an issue because there aren’t enough trans people for it to really matter. As if that is the problem that we’re ultimately talking about. It’s this piece of, well, we don’t want to make things that make life easier for you, because we don’t want you. That, I think, gets in the way of so much progress and change. Not for the advocates, not for the parents, not for the teachers, not for the folks running the institutions. There are a whole host of political, social, bureaucratic, philosophical problems that exist in that space that may be barriers to creating more accessibility and equity.
But from a fundamental human level, how do we get a majority of people behind these initiatives? It comes down to confronting the fact that we have metabolized these negative beliefs about people with disabilities, distance ourselves away from disability as much as possible, and done so in a way that makes it very, very hard to change. And so we need to collectively come to terms with this, in order to be able to take something like that legislation and apply it to a whole host of technologies and a whole host of practices, and to make it so that it’s not a huge fight every single time for every little gain. And so my note of hope is not going to come from me, but is going to come from Hendren. So one of the reasons that she wrote her book, and she states this directly, is for her son, who has disabilities. And at the end of the book she writes, my son doesn’t need a gentle and pacifying form of inclusion. Inclusion is necessary, but it will never be sufficient. He needs a world with a robust, countervailing understanding of personhood and contribution and community in it, human values that are alive and operational outside the logic of the market and its insistent clock. He needs it, and so do the rest of us. I want to repeat a piece of this that resonated with me very strongly. Inclusion is necessary, but it will never be sufficient. What we need is a world with a robust, countervailing understanding of personhood. We must view people with disabilities as full people who contribute and are part of community and both receive and offer care. And whether they are able to fit into the time clock that seems to really just be governing every element of our world today should not be the central question. That clock isn’t working for so many people without disabilities, and it’s not leading to gains for us either.
Productivity is up, but wages are down. We have the most educated, efficient, and effective workforce that we’ve had in modern history, and this is the second generation that is worse off than its predecessors. We need a reshifting, a reframing of our focus, and that requires a movement. So it won’t be in this episode because I’m out of time, but I’m going to say this cryptically in Malcolm Harris’s, Kids These Days. At the very end he analyzes what are the solutions to really the bad future, and he looks at donation, protest, voting and legislation, innovation, and what he comes down to is, none of those things have worked or will work. We have two options, the bad future or revolution. I do think that changing our view of personhood, contribution and community is the fuel and the product of that revolution. And, if like me, you sometimes become demoralized by the sheer scope of that as a solution, you can put yourself in another world and read romantasy books. That’s all, folks.
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ALIDA: Thank you for listening to Care Work. Please share this podcast with other care workers in your community so that we can collectively create a culture of care.
This podcast is a collaboration between Ethos and Alida Miranda-Wolff.
Your host is me, Alida Miranda-Wolff.
Theme music “Vibing Introspectively” was written and recorded by Logan Snodgrass.
Production assistance was provided by Ivana Savic-Grubisich.
Audio editing and podcast post-production were provided by Organized Sound Productions.
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