#85 The Disability Discourse

Alex Haagaard, an artist, designer, activist and the Director of Research & Development at the Disabled List

November 18, 2020

There are things in life that people take for granted every day. For many of us, that is the privilege of moving about in a world that was designed for our bodies and our physical abilities. Imagine not being able to get to a meeting on time because the nearest subway isn’t accessible. Imagine not getting any matches on a dating profile because 2 years ago you got into a car accident and now you get from place to place in a wheelchair. Imagine what it feels like to have your body be looked at as a problem to be solved. In this episode, we are trying to address ableism by talking to people with lived experience about what having a disability means to them while living in our society and culture today. We talk to disability advocates about the important work they are doing to help challenge how we define disability. Is disability a design problem that we can solve? We also touch on topics that many of us think about on a daily basis: sex, dating. We hope that this episode will help you reflect on some biases you have about living with a disability and think about what you can do to make your world more accessible, because we all deserve the same opportunities in life regardless of our physical ability.

Written by: Claire Mazzia

The Disabled List
Dr. Jeff Preston's website
Centre for Independent Living in Toronto

Seth Kibel [0:00] Before we begin, we would like to acknowledge that Toronto was founded on the traditional territory of many indigenous nations, including the Mississauga, the credit river, the Anishinaabe, the Chippewa, the Haudenosaunee, and the Huron-Wendat. This meeting place is still home to many First Nations, Inuit and Metis peoples, and we are grateful for the opportunity to live and work on this land. As we explore stories of medical science. We also ask our listeners to learn about and reflect on the long history of science and medicine as tools of oppression against Indigenous peoples, and the complex perceptions of and barriers to healthcare that are still experienced by Indigenous peoples in Canada today.

James Saravanamuttu [0:37] On this episode of Raw Talk, we're talking about disability and ableism. These are broad terms that encompass many important realities that some non disabled people may never have to think about. That's why we feel it's important to talk to people with disabilities to help ensure that their voices are heard. Disabilities can impact people's lives in so many ways, depending on the nature of someone's disability, and the accommodations or supports they have access to. It's also important to note that the experience of a disabled person also interacts with other aspects of their identity, like their race, gender, and socio economic status.

Seth Kibel [1:14] On today's episode, we're only scratching the surface, but to get a better grasp of what it means to live in a society as a disabled person. We're going to bring you three stories from three different people that we hope will help you rethink and challenge your own perceptions and definitions of disability. Through these stories, we're hoping to start a conversation about the different ways in which we see disability in our society, and introduce you to the academic field of critical disability studies as a way to rethink how we define and view disability.

James Saravanamuttu [1:43] I'm Seth and I'm James, welcome to Episode 85 of Raw Talk podcast.

Seth Kibel [1:59] We started out by speaking with Alex Haagaar, an artist, designer, activist, and the director of research and development at The Disabled List.

Alex Haagaard [2:06] My name is Alex Haagaar, my pronouns are they them, I currently live in Kingston, Ontario. And I actually did my undergrad at U of T in the pathobiology program. And then went and did a Master's of design at OCAD University focusing on healthcare service design. And then, in my late 20s, I began increasingly struggling with an undiagnosed illness that I've actually been dealing with since I was about four years old, I first started complaining of chronic pain, and some immune symptoms from the age of four. And around the age of 26 or 27, I became unable to continue working because my symptoms had gotten progressively more severe, being undiagnosed and untreated. I was also dealing with narcolepsy, which was not responding to medication at the time. So I was sleeping upwards of 16 hours a day. I essentially went and moved back in with my parents in rural Ontario for three years. And I say that I was working full time as a patient working on accessing diagnosis and care. I identify as disabled and chronically ill. And that's an important sort of level of detail for me because there are disabled people who are and who see themselves as healthy. I most certainly am not, I am much healthier than I was three years ago, I've been able to find treatments that have improved my quality of life dramatically to the point that I can now live independently again and work, but I still deal with chronic pain, I still deal with chronic fatigue, I still deal with the fact that I'm allergic to hot weather and can't go outside without experiencing hives and worsening of chronic pain for like about eight months out of the year here. You know, it's an ongoing thing. And I have to I have to be really mindful and conscious of energy and pain levels and it affects the way that I work. I work another disabled person and honestly, I don't think I would be able to function in a non disabled work environment anymore. So I feel incredibly grateful that I have a business partner who is also disabled and we're able to sort of support each other in our access needs and our needs for rest and things like that.

Seth Kibel [4:12] As Alex mentioned, they identify as disabled and chronically ill. Seeking out care to receive a diagnosis that explained their experience was extremely challenging.

Alex Haagaard [4:22] It's actually really funny because my three main diagnoses are Ehlers-Danlos Syndrome, which is a connective tissue disorder. There's also Mast Cell Activation Syndrome and POTS and together Ehlers-Danlos, Mast Cell Activation Syndrome and POTS or Postural Orthostatic Tachycardia Syndrome are known as the triad in EDS phases. As so Mast Cell Activation Syndrome essentially means that my mast cells activate irradically and they essentially have a very low threshold for what will set them off. For me that's everything from rice, hot weather, cold weather, overly hot showers, certain fabrics, certain cleaners. It's one that's treated with a lot of skepticism because people that how can you be allergic to all these things? I am very aware when I talk about it. And most of the people I know who share this diagnosis are very aware of that when we talk about it, we sound like hypochondriacs, and that's something that has been leveled against many of us. I was told that I was just a hypochondriac for years that I just needed to eat healthier, exercise more. In that time, my health degraded so badly, I say I lost my 20s to it. You know, I was attending school and trying to work in a store. That was literally all I did. And I didn't do it all that well. I was I was struggling and I'd get home and I'd literally just sleep until the fifth alarm I'd set the next morning, it went off and I was already 20 minutes late for my morning class

James Saravanamuttu [5:44] 26 years. That's how long it took Alex to receive their definitive diagnosis. One possible explanation that Alex mentioned for this delay, is that little was known at the time of the diagnosis, and even now, not much is known about their chronic medical condition and how to manage it. However, as Alex goes on to explain, there's a systemic problem with the way chronically ill patients are required to navigate the healthcare system to receive secondary care.

Alex Haagaard [6:10] It's a structural problem. Doctors essentially are expected to perform a role of gatekeeping secondary care. It leaves family physicians adequate time to deal with the things that they are equipped to deal with, and it delays access to care for patients who are seeking diagnosis. We also can't discount the fact that there are many, many Canadians who don't even have access to a regular primary care physician so if you're accessing primary care through an urgent care clinic, that broken cycle of care, as you seek referrals, it can absolutely derail you. So I think on that level, there's a systemic problem where we actually need to design better ways for patients to be referred to secondary care. There's the saying, don't confuse your Google search with my medical degree, as a common repartee to that within the chronic illness community, which is don't confuse your four hours of lecture with my 20 years of living with this condition. From the designerly perspective I come from, let's take at face value that you can get a lot of bad information from Google search, if you're trying to seek diagnostic information and that places like Web MD, their diagnostic algorithms are not effective. They're really not. Why is the onus on the patient to stop seeking information rather than to develop better algorithms? Patients are not going to stop seeking information they need to help and honestly, we could create so much more efficiency within the care system by actually enabling them to do that more effectively. And this is the thing too chronically ill patients, we actually do know what we're doing, because going back to that "I've lived with this for 20 years" - in that time, we do learn how to do research very effectively. I think there is a lack of understanding just how much knowledge is contained within chronic illness communities and how much that information sharing has been enabled by social media. We often talk about how like Facebook groups are terrifying because you know, these anti-vax and bleach cults, which are absolutely terrifying. But I thought my diagnosis because of Twitter. I actually had a doctor who lives in the United Kingdom, who shares my conditions, reach out to me over Twitter and say, obviously, she didn't say you have the speech that I think you need to look into these. And that was my starting point. And the more I started to look into them, the more pieces I was able to put together and there are fantastic communities, on Twitter and on Facebook, where either people who share diagnoses share practical tips around management, around accessing care within their region. I think that clinicians often underestimate the extent of the knowledge that chronically ill patients bring to the table. There's a sense that when you've been searching for a diagnosis for 20 years, that just means you're hypochondriac. No, often it means there is very much something wrong and they have a lot of knowledge that is worth listening to.

James Saravanamuttu [8:56] Alex explains that this inherent power imbalance between the patient and the physician needs to be addressed to reduce the health disparities affecting disabled people in our society. In order for physicians to provide comprehensive care to disabled individuals, the healthcare system should work to redefine the kinds of services deemed to be medically necessary, especially for disabled individuals.

Alex Haagaard [9:18] I think fundamentally, there is a problem within medical ways of knowing it goes back to the clinic when we created the role of the patient. When we move from the sick person, to the patient to someone who is a body upon whom pathologies are to be mapped. We lost something. We effectively disenfranchised the sick person within the clinic and created a system of knowledge where the words of the patient inherently hold less value than whatever we can see or name on laboratory pathology. And we've created this fiction where things are unreal until sort of validated by objective measures, while discarding the ways in which things that we consider wholly objective are actually wholly subjective. I think within Canada, there are a couple of major issues, one of which is, within the Canada Health Act, people in Canada are defined, are guaranteed reasonable access to medically necessary care, except neither reasonable access nor medically necessary are defined, which is a little bit of a problem. It leaves both of those essentially open to interpretation by health network, or potentially even by individual practitioners. So when you're dealing with something, this has been very much my experience that Canada is quite good at providing care, if you have something that is going to that's either sort of acute and tangible like broken leg, or something that's going to kill you in short order. We're pretty good about providing care to that we are miles ahead of the states. But if you have something that is not going to kill you immediately or directly, if it's going to kill you indirectly, or if it's part of I'm doing air quotes, "just going to decrease your quality of life", or if it's going to take years or decades to potentially kill you, there's nothing and like, this is the thing too, I got a diagnosis, I still wasn't really able to access any kind of care for my conditions. I'm largely self treating, with what I can get off the shelf. And with herbal analogues for medications that haven't been made available to me. I know when I tell half of my doctors this to the sort of grimace and sort of wash their hands of me because they think I'm, they always ask me, "So what homeopath are you seeing? Or what naturopath are you seeing?" And I say "No, I'm I don't subscribe to those because they don't have a particularly logical basis in physiology." I would love it. If we could have a shift towards medically beneficial. I think that would be crucial for people with chronic illness. Illnesses that are they're never going to be cured and they're also probably not going to kill us directly, but they nonetheless drastically affect our quality of life. I think that is a huge, huge within Canada. And then I think also, we need to recognize the massive disparity that exists between access to health care in rural versus urban and suburban spaces and also between provinces. Because honestly, like I moved to Kingston, about a year and a half ago. I used to get angry with disabled people from Toronto who would talk about how much better our health care was in the States because I'd be like, I don't know where you're living, but the care you're describing is not what I'm receiving. I kind of get it a little bit more now that I'm in Kingston, because honestly, I feel like I've moved to a different country, that level of care that I've been able to access even during a pandemic in the last year. It's absolutely wild,

Seth Kibel [12:23] Disability is more common than you may think. A 2017 statscan study on disability found that 22% of Canadian adults had at least one disability, yet ableism within the healthcare system is ever present and often leads to people being weary of accessing care when they're sick. You'll never hear from Wendy Porch, who is a leader in the disability community, and tells us about her sometimes dehumanizing experiences within the healthcare system.

Wendy Porch [12:47] My name is Wendy porch and I am the Executive Director at the Center for Independent Living in Toronto, also known as CILT. I am a cisgendered white, straight disabled woman and a mom. I've had my disability since I was a kid. I was born missing front of my right arm and part of my hand. I have grown up knowing what it's like to be excluded, and to be treated as though I'm different. Often a problem to be fixed. For me as a young disabled kid growing up the hospital that I went to was an evolution of the hospital that they lived in and it was called the Ontario Crippled Children's Center. So I grew up knowing every year I was going to have a visit to the Ontario Crippled Children's Center when I could finally read and found out what crippled meant it was kind of devastating, to find out that there was something fundamentally wrong with me because I just felt like me. I just feel like me. I'm a terrible singer that shouldn't be held against me. But there was a context. I was a medical problem that needed to be solved is also something that I grew up with. As the Academy has moved on in terms of the way that it thinks about disability, it's happening alongside people with disabilities and the way that we think about ourselves. Being able to talk to each other and make these discoveries and move towards something that respects our inherent dignity and sees us as people first. I had some encounters with some of my health care professionals that made me feel really embarrassed at times. I went to a teaching hospital and residents are part of that interaction. And one appointment, I sat there and I was really pregnant. It was kind of a regular appointment very uncomfortable. And my husband came with me to all of my appointments to which was really sweet, but it was just a second and the healthcare provider yanked my sleeve up and pointed at my arm and said to the resident standing with them, you can see here that she was born with a deformity, but she's doing okay in her life and she's going to be a great mom. And it was a very demeaning experience for me. I'm not used to people talking to me like that anymore. People did talk to me like that as a kid with a disability. And certainly at the Ontario Crippled Children's Center where you would have to stand in front of your x-ray in your underwear for professionals in the room to sort of you know, pontificate and think about how they were going to fix you. But it had been a very long time for me. Since somebody had spoken to me like that. I don't think that that is something that non disabled women, or parents-to-be experience. And I think in some ways for me, I was more concerned about what was going to happen when I had my baby. I was sort of thinking ahead in terms of diaper changes and feeding and breastfeeding. You know, how was I going to hold the baby? And I had asked questions about that repeatedly throughout the course of my pregnancy. Nobody had any answers for me, none. I do know myself, I thought I was going to be able to do not do. And I was for one of the first times in my life really asking for help. There were no resources for me, and nobody really had any answers. One of the repeated messages from me was that we've never had one of you before, we've never had disabled mom-to-be before so we don't really know what to do with you.

James Saravanamuttu [15:55] So far, many of our stories have been about the difficulties and seeking care for people with disabilities, and the stigma and embarrassment they face when they do access care.

Seth Kibel [16:04] As a young non disabled person, I have the privilege of not having to spend substantial amounts of time and energy worrying about my health and I acknowledge that people with disabilities often don't have that luxury because of the really important issues and care that our previous guests discuss. At the same time, people with disabilities also spend time thinking about the same things as every other young person. And a big thing that everyone thinks about, regardless of ability or disability is sex and dating. Yet, there are widespread misconceptions about sex and dating for people with disabilities. And people with disabilities face many obstacles in learning about sex, expressing their sexuality, and finding meaningful relationships. To learn more, I spoke to the brilliant Dr. Jeff Preston.

Jeff Preston [16:49] My name is Dr. Jeff Preston. I'm an assistant professor of disability studies at Kings University College, which is an affiliate of Western University. My training is in media studies, which I brought together with a background in disability studies to really focus in on representations of disability in popular culture. My research really started in kind of a broad view, more traditional media research looking at television, films, comic books. I've since become a lot more interested in digital media, digital communities, specifically interested in internet memes, the ways that memes are created, the ways that they grow and spread and the discourse of mediums that are generated by them.

Seth Kibel [17:32] So Dr. Preston, what do you think are some of society's biggest misconceptions about sex and dating for people with disabilities?

Jeff Preston [17:39] I would say kind of straight out that the big blanket problem is the idea that disabled people are fundamentally not sexual beings and that comes in kind of a couple of flavors. On the one side, we have this belief system, that disabled bodies are fundamentally not sexually attractive. That biological difference, sort of bodily deformity, as it's called, is not something that is going to fit within regimes of sexual desire in North America and Western contexts or really actually any kind of global context. Then on the other side, we have this idea that disabled people are not sexual themselves. This might be born out on the belief that people with physical disabilities, for instance, are not physically capable of having sex, whether it is that they are literally impotent, that they are not able to get an erection if they're a man, for instance, not able to produce children, or that they just their bodies don't physically work in such a way to allow for sexual stimulation or participation. The other side of it, which is that we have a real tendency of thinking about disabled people as children. This might be because we also see disabled people as being dependent on others predominantly dependent on non disabled people, whether it be for care needs for sort of day to day living needs, for whatever reason, then we seem to bind that together so that like children, disabled people are thought to be not interested in sex, naive about sex, or in the case of people with intellectual impairments, that they're not cognitively able to understand sex, and therefore we should keep it from them, hide it from them, not tell them about it.

Seth Kibel [19:21] How do you think that those widespread social beliefs manifest in let's say how we educate young people with disabilities about sex and their bodies?

Jeff Preston [19:31] Yeah, this is this is a great question and to answer it, I'm going to talk really personally on this one, my own personal experience as somebody with a physical disability growing up in you know, the 90s in Ontario. At my school, the the gym class itself was "technically" accessible at the physical gym, I get into, however, the room where sex ed was taught in high school was in a part of the school that was essentially inaccessible. The only way to get to that room was to go through a boiler room, which was not of course allowed for a student to be rolling up through the boiler room. What it meant was that I didn't do gym class like other students. I had a specialized gym class that was done, which was essentially just physical therapy for me. It meant that I received no sex ed training after I left elementary school. I got really just the very start of it in grade seven age. I missed a lot of details. This was something that was caused by inaccessibility, caused by the fact that gym class is not really designed for somebody who uses a wheelchair, but also designed by the policy that sex ed is tethered to physical education. It reveals this sort of idea that at no point was there ever a belief that I would need to have that information, there was never any desire to actually open that up. I was never even asked if I wanted to participate in sex ed. It just wasn't on the radar. I think that it is tethered into another little tricky subject, which is eugenics, specifically, the idea that disabled people maybe shouldn't be reproducing because that, of course, would be corrupting the gene pool. I think that this eugenic idea that disabled people shouldn't be reproducing also starts to take away some of the pressure to provide sex education. After all, why would you give Jeff Preston sex education? If Jeff Preston shouldn't be reproducing. If we take a step back and think about this rationally, there has to be some concern about the ways in which we are really putting people with disabilities at danger by not giving them adequate sexual training and education. A big part of sex education isn't just about how to use a condom, knowing how not to get someone pregnant, but rather, there's a lot in there about understanding their bodies, understanding the changes that happen with puberty, and also understanding consent, understanding what it means to say no, both as someone who might want to say it, and also someone who maybe needs to hear it. I definitely worry about the ways in which disabled people are regularly left to figure it out on their own. But also I wonder what it means to disabled people who look on to themselves and say, "well, if I don't deserve to have sex, education, education, if I don't, if I'm not supposed to be receiving this than maybe this is in a world that I shouldn't be a part of, that I'm not supposed to be a part of it. It's something I'm not either going to be interested in" which of course is just not realistic. Humans are sexual beings. That's just a reality.

Seth Kibel [22:40] So do you think that the depiction of people with disabilities within the media contributes to and reinforces the widespread social misconceptions of disabled people being inherently non sexual or undesirable like we were talking about before?

Jeff Preston [22:55] Yeah, absolutely. I think going back to the earlier statement around we don't perceive disabled bodies as sexual, in part because it's just not something we typically see. And when we do see it, it tends to come out in very specific ways. As a great media scholar in the world with disability Norden. As Norton explains, disabled characters often find themselves in isolation, sort of the title of his books, Cinema of Isolation. That disabled characters tend to kind of just appear as these signular, siloed objects. They typically aren't necessarily fully integrated into stories to refer to Mitchell and Snyder. They tend to be a bit like narrative prosthesis, that disability is just in there to help move along a plotline to move forward or to identify traits of an individual, we don't tend to see them as fully fleshed out characters, which means, well why would they have romantic interests? Why would they have sexual desire? Because they're not actually people, they're really just props, they're objects to be used to allow other characters to, you know, show that they're good caring people because they take care of the disabled person, or to show that they're a villain because they are disabled and angry. Because of their bodily difference. When we do see instances of sexuality and disability, we don't typically see them intersecting with non disabled characters, that often when we see disabled characters having romantic relationships, when they are having romantic relationships with non disabled characters those relationships are often fraught with difficulty and anxiety, that often they fall apart. They're not relationships that can be sustained. Whereas on the other hand, disabled characters that partner with other disabled people are seen as being fruitful, functional, if only maybe "a little cute", quote, unquote, like a simulacra of non disabled sexuality, something to be enjoyed as being kind of sweet or pleasant then to show a little of my bias: I love to talk about Drake. Is if we look at Degrassi the next generation, that Drake, Aubrey Graham, of course, started from the bottom on Degrassi. In this show deeper his character, Jimmy Brooks. Yeah, we're already here, people are gonna be like, wow, that took you a long time to make your first Drake reference. Dr. Preston, you must be slipping. Within the character, Judy Brooks, basically, Jimmy loses his girlfriend because he's in a wheelchair. She doesn't want to date him anymore after his injury. He gets back together with an ex girlfriend, but that relationship doesn't work because, quote, "she doesn't want to take care of him anymore." She doesn't want to be his nurse. And he doesn't actually find joy or happiness in a relationship until he meets another disabled woman in rehab. They eventually quote unquote, "get married". It's like an off screen marriage. That's the only way that you can actually find love because apparently only disabled people can understand each other and can connect on that level. There's an incongruence with disabled and non disabled. We have this idea that disabled people really need to only be dating "their own kind", quote, unquote. But I think it's rooted in this idea that we seem to think that if a non disabled person and a disabled person are to be in a relationship, that relationship will inevitably be a power imbalance. The non disabled person will enter into a caregiving role as opposed to a loving or a romantic partner role, a sexual role. The disabled person will not be able to connect well with the non disabled character, because the non disabled character doesn't quote, "understand what it's like to be them."

Seth Kibel [26:35] And what kind of effect you think these depictions in TV and popular media have on the self esteem of young sexually interested and expressive young people.

Jeff Preston [26:44] It's tied up in this very sort of rational ablest understanding of disability, which is dis ability, if we just take the word and break it down this ability or lack of ability. The disabled bodies immediately marked as a body of lack, or a body of loss, a body that has suffered some sort of tragedy. This is why I think we ask people, but I think the tied up in this idea that disability is coded so naturally, as a loss of ability, as a loss from the non disabled standard, which is perceived to be normal, that we must, of course, then pity, we must, of course, offer sympathy. And we must also hold separate from ourselves. Because think what's happening under the surface here is that disabled people, in the same way as woman and man are tangled up in this discursive knot. I think so to do non disabled people rely upon disabled bodies as a way of trying to justify their own normalcy, to assure themselves of their normalcy by looking at these dysfunctional or non functioning bodies. I have to say, growing up with a physical disability, I was born as I alluded, I'm born with a disability. I absolutely had a ton of anxiety, as a young person as a preteen and going into teenager years. I really wanted to have a romantic relationship. I wanted to date just like all of my other peers. And I was deeply concerned that I would never even be given a chance. Women would look at me and say, "that's not what I am interested in. That's not what I'm looking for." Because as I had understood it, as a young child, watch a lot of television, the girls are gonna go after, to some meme parlance, the girls were gonna go after the Chad's. They're all about the big, muscular manly men and that really just wasn't me. It's really hard to push down that little voice in the back of your mind, that's always asking, would this be different if I wasn't disabled? Would this be different if I was, quote unquote, normal? Or for someone of my persuasion, would this be different if we didn't devalue disabled people so much? Would this be different if people understood that disabled people can be loving, caring, sexy, fun, people? How much of that rejection is rooted in me as a person, and how much of it is rooted in the diagnosis? That kind of thing, it weighs really heavy on your mind. And it really in some ways corrupts the relationship that you have with people because then you're always second guessing. Right? You're always second guessing, like, is this person, kind of a bad person? Is this person judging me based on things that are completely manufactured or cultural in nature and not reflective of me as a person. That results in relationships in a really kind of strange way and you can understand why I have quite a few friends with physical disabilities who talk to me and say, very similar things, right, that they're like, "I feel like I don't have a chance. I feel like a woman is not even gonna look at me as being a possible partner. I've always be sort of just "the friend"." That's of course not actually accurate. That isn't to say that not hard. That isn't to say there aren't lots of barriers and obstacles. I think that it conforms to this very heteronormative understanding of sexuality and gender roles. Fundamentally, that's a nugget that we need to crack for a lot of reasons, but I would say disability and sexuality is just one of them.

Seth Kibel [30:16] Hookup culture like matching on apps, one night stands, one-off flings largely dominates how millennials date each other and have sex with one another. So in what ways does ableism manifest in hookup culture and what needs to be done to make sex and dating in the 21st century more inclusive?

Jeff Preston [30:34] I think that in some ways, these platforms hyper-aestheticize the dating process,. It means that you are really making snap judgments on people based on a couple pictures and a few lines in a bio, whether or not you're even going to filter them out, like whether or not they're even gonna just talk to you, you're making that decision on a very small amount of information, which on the one hand, I think, is probably not good news for people with disabilities that have very apparent differences. On the other hand, I have friends that have actually really enjoyed and appreciated things like Tinder, and Bumble, and Grindr, because it's meant that they were able to kind of sensor the disability a little bit before making the move. So by having photos that didn't disclose their impairment, they felt that they were able to make more connections, they got more swipes, therefore they were able to sell themselves first, before adding in the disability afterwards. Now, you can get into all sorts of conversations about the ethics of hiding the impairment of quote, unquote, "tricking people" into a relationship and whether or not a relationship is actually even going to be solvent if it's based on missing a really key part of your identity. It's easy for us to say, "well, you know, romantic relationships should be based on the whole person, it should be an understanding of not just their physical appearance, but also their characteristics, their sense of humor, their loving nature," It's all well and good for us to say that that's what really should be based on. But if that is not how people typically find a relationship, that's not how typically people are dating anymore, and especially right now, in sort of the world of COVID. I think that makes our conversation about disability sexuality that much more urgent, because there is really the potential that it could become even more difficult for disabled people to date, if we're now going to basically isolate our sexual relations in through this like marketplace, Amazon storefront of sexual relations.

James Saravanamuttu [32:46] As we just heard from our guests, ableism has systemic roots in healthcare, the media, digital technology and social institutions. So how do we go about changing this? Alex, Wendy, Karen and Jeff, are undertaking many initiatives to change how society perceives and treats disabled people and create space for disabled people to change the world around them based on their own lived experiences. For instance, Alex is part of The Disabled List. A link to their website is in the show notes. Trust us go check it out. When we went onto the website and clicked on the link, the first thing we saw on the homepage is "This website is disabled" in large font. When we saw that we thought the link was broken or the website was under construction, but it's only after we scrolled a bit further down that we realized that the website was not in fact broken. And that the purpose of the initial text is to encourage people to reevaluate their use of the term disabled and the connotations attached to it. We asked Alex, given our use of the term disabled in our day to day lives to describe things that aren't working optimally. Do we need to change the way we refer to disabled individuals in order to reduce stigma and ableism?

Alex Haagaard [33:56] There's actually a campaign, a Twitter campaign #saytheword that was created by a disabled activists called Florence Carter long and it's essentially a push back against the tendency that a lot of us encounter to sort of euphemized disability, s say things like special needs are handi capable or differently abled, I think what we're trying to accomplish with the website is not so much to get people to stop wanting to name disability in people and in society, but to consider what are the assumptions that we make around disability when we use that? Within disability theory, there is what's called the medical model, the medical model when it recognizes disability locates disability in the body or mind and wants to fix it. And the social model locates disability in society and it says that people with a typical body minds are oppressed by society because it's not built in ways to include them. And this is really appealing to a lot of designers because hey, if society created disability, then it's effectively a design problem. We can design our way out of it. In some ways, this is very useful accessability standards for buildings in terms of ramps and push buttons really, really useful. But it also in our work at The Disabled List we find it re problematizes disability a little bit. It creates this lens through which disability is only considered in design in terms of how it can be solved as a design problem. And what we're trying to do at The Disabled List is look at disability as an identity and culture and say, okay, what are the experiences that disabled people share when they move through life in a body that is sort of stigmatized and viewed as a typical? What are the the cultural accomplishments and sort of cultural standards? What are what's the humor, the language, the artistic production that comes out of that? So I think, in using the word disabled the way we have on the website, what we're hoping to do is provide people with a moment of reflection on all those different ways of conceiving of disability within society and reflecting on the assumptions that they're making about what disabled identity is, is they're also using it interchangeably with broken, non functional deactivated.

James Saravanamuttu [36:04] So what kind of work do you do at The Disabled List?

Alex Haagaard [36:07] A lot of the work that we're doing is consultation with design organizations, media organizations to try and trade them a) an understanding disability through this cultural and identity-informed lens, and how to take that into their organizations in an effective way. And one of the things that we try and get them to move beyond is compliance-oriented approach to accessibility, and again, with the acknowledgement that compliance based approach to accessibility have been really, really important for creating minimum baselines of access. So one of the things that we've worked on is developing guidelines for photojournalistic alt text. We were asked, you know, how does alt text actually differ from the caption? Because we're already trying to put information about what the image is in the caption and what the context is. What is added by alt text? And so what we were suggesting is that it should contain very brief level of formal analysis. And it should also be talking about the interpretive and subjective content of the image. And essentially, that as you're writing alt texts, you should be thinking about, what is it that a sighted person or person who is able to engage with visual content, what are they actually getting from that experience? It's not just about saying what's in the image. What is the actual image doing when you're able to engage with it? And sort of thinking on that question, and trying to express that textually within the alt text. And it was actually really interesting, because they said, well, that's a bit of a problem for us, because photos in journalism, they serve to convey emotional impact without sacrificing journalistic objectivity. It's a way of sneaking in a little bit of emotional content into journalism, which is famously intended to be objective. The moment that you explicitly name that content within the alt text, you are sort of admitted to the lie of journalistic objectivity. And those are the kind of questions that we're trying to engage with, what are the cultural experiences that are left out of standard accessibility processes? And how can we begin to engage those a little bit more meaningfully and experimentally to actually answer some things that often gets sort of left by the wayside in traditional design? I think there's something really interesting in that examining how personal and lived and embodied experience can inform design processes really deeply and get it insights that can never be captured by an outsider, because this is also things designers are sort of taught that empathy is their superpower. But the problem with empathy is that a you will never have access to all of the knowledge that someone has within their own body or specific cultural experience. No matter how good a research you are, there are some aspects of embodied experience and cultural experience that are just they're not translatable. Right? Any designer and design researcher who operates from empathy is interpreting whatever they find whatever they do gain access to through the lens of their own cultural and embodied experience so it necessarily introduces biases. I think instead of striving for and imagining objectivity. I think there's a real value in embracing that personal and embodied and subjective experience as a way of structuring design research.

James Saravanamuttu [39:14] The traditional research paradigm centers the researcher in the driver's seat. The academic researcher decides what to study, how to study it, and how to share the findings. Conversely, Dr. Karen Yoshida has been studying disability by emphasizing the lived experience of disability, and building teaching and research community partnerships, one of them being Wendy Porch, who we heard from earlier. Karen Yoshida is a professor at the University of Toronto, and engages in a field called critical disability studies, which analyzes disability as a cultural, historical, social and political phenomenon, as opposed to the classic medical lens.

[39:55] My name is Karen Yoshida, I'm a cisgender middle class, non disabled woman of Japanese ancestry privilege as a PhD trained academic, in the social inequalities of health and disability. I'm a professor within the Department of Physical Therapy and in the rehab Science Institute, as well at U of T, my relationships to disability or multiple I have disabled family members, friends and colleagues. And I've worked with colleagues, activists and other disabled positive allies in academia and in the community since 1984. What kind of work that I do? Well, my teaching and research work that I do centers, disabled people, and the broad and diverse disability community. I've worked in partnership with the community to teach critical disability studies within the physical therapy program since 1993. Philosophy of equitable partnerships, working with disabled people not on them extends to the research that I do, and centering disabled people through projects that give space for their voice, recovering their stories, and reclaiming their histories. What's really critical from a critical disability studies point of view is viewing disability as a social and constructed phenomenon. While people live with body and mind differences, these differences are not devalued with from a disability studies point of view, but reflect the diversity of human difference. CDS, or critical disability study does not reject medical care. But it rejects the framing that you've mentioned, James, about the framing of bodies and mind that are different as a problem. It rejects that framing, because it implies that difference is a burden and a deficit and a lack in somebody, therefore has to be remediated in some way. So this imperative, as far as fixing people comes from many different sources. But it largely comes from an idea of a normative standard of what bodies and minds should look like, how they appear, what people how people should speak, how they should talk, how they should move. So we have these kind of normative standards, that is a reference point so that anyone who deviates or departs from that, then is deemed to be in need of some kind of treatment. Why is critical disability studies important to clinicians? It is fundamentally important to clinicians. We we work with people with differences all the time, whether it's temporary differences, or someone who's living with something long term. So from a teaching perspective, to teach about disability studies, and that difference, or disability is more socially constructed, it's based on the disadvantage that people experience when they go into the world and have to deal with structures and practices that do not take them into account is really important for clinicians to think about. They need to think about how do I in a positive way work with people who know their bodies and mind better than I do? So let me just give you one example. We have another leader in our community who has lived with quadriplegia. He broke his lower leg. He uses a wheelchair, an electric wheelchair to get around. But they wanted to cast his leg straight, like straight up from the hip. So his leg was would be sticking out. He said you know what? He said that's not going to work for me. I have to transfer I have to get people to help me transfer. If I have my legs sticking out, like it's just gonna be impossible for me to transfer to my bed transfer to my car, whatever. He said, can't you cast my leg with my knee bent since the bone is the lower leg? And they said, oh, yeah, okay, fine, like no problem. So here's an example of someone who like knows her body, and knows what they need to do in life. And when negotiating, saying, look, if you can do it this way, then I can carry on with my life. If you do it the way you usually do it, that's not going to work for me, it's going to create a lot of hardships. So that's just a small example about how it's so important for clinicians to dialogue with disabled people, if they come to them for treatment, or for consultation or for understanding where the resources are. It's really important for health professionals to kind of check their bias and check their assumptions around what they think about disability, race or whatever. And in our physical therapy program, we do that we have students go out and visit people with disabilities, because we know that they might have, they'll say, I have no I have no assumptions. I have no biases. But when they start to meet people, they realize, "oh, I do have some implicit way of thinking about disability that didn't come out until I had this visit." A lot of it is this notion that disability is a tragedy. That it is a burden and in meeting people who are out there in the community, living working family, volunteering, etc. They've come to realize that they have to think about their implicit biases and assumptions and kind of make sure that they don't fall into those kind of tropes, which of course are everywhere.

James Saravanamuttu [44:57] As Wendy mentioned earlier. She's the Executive Director of the Center for Independent Living or CILT in Toronto, we asked her to talk more about the kind of work CILT does and the services they provide to people in the community.

Wendy Porch [45:10] We are by disabled people, for disabled people. We are based on the Independent Living philosophy it doesn't support traditional models of rehabilitation, it does the opposite. It supports models of rehabilitation and of support that empower individuals rather than create dependencies. CILT operates on the philosophy of the Independent Living Movement, which was developed in response to traditional rehabilitation service models. And our aim is to develop and implement dignified social services that empower individuals rather than create dependencies. We have a number of significant programs at CILT. One of them is province wide so we are the provincial administrators for the Direct Funding Program, which is an innovative program that sees people with disabilities themselves, become employers and manage their own attendance services. And we provide support for that program across Ontario, there's 1000 people with disabilities on that program. We're also the administrators of the attendance service application center that is a unified application center for people within the Greater Toronto Area who want to access attendance services or supportive housing. We coordinate that in partnership with a number of organizations that provide those services in the community. We also provide what's called core programs at CILT, these are central to the idea of the independent living movement. They are peer based programs that see people with disabilities providing supports to other people with disabilities. We have an independent living skills coordinator that helps people in the communities to learn how to negotiate their own services and how to speak about what their needs are and the relationships that they have with service providers. We have peer based programming that provides opportunities for people with disabilities to connect with other people with disabilities to be able to negotiate issues that they might have coming up in their service relationship or in their relationships in general. We also have a parenting with a disability network that we support through our core programs. And we have a program right now called de next, where we are working to provide training opportunities to people with disabilities to learn about how to tell your story. We're supporting people to have training and podcasting and video development so that we see more stories that are authentic and come from disabled people that describe what it's like to be a person with a disability and show us in our own world. Why do I do the work that I do? I've had my disability since I was a kid so I was born missing part of my right arm and part of my hand. So I have grown up knowing what it's like to be excluded, and to be treated as though I'm different, a problem to be fixed. I think when you live your life like that it's hard to not want to change that it's hard to not want to work with other people that you identify with to make fundamental changes that will see people with disabilities included.

Seth Kibel [47:48] Many of the fundamental changes that when he's working on centers around the Independent Living philosophy, historically, in Canada and around the world, disability has been thought of something like a medical problem that should be fixed. And if a person's disability can't be, quote, unquote, "treated" they were sent off for care in institutions for really long periods of time. The independent living movement is founded on the rights of people with disabilities to live autonomously and with dignity in their chosen communities.

Wendy Porch [48:18] In North America, it really started in the 60s and 70s in California. We had a context where people with disabilities were largely shut away. So there was an expectation that you were not going to be part of the community, you're not going to have a job, you're not going to go to school. And you were supposed to be okay with that, too. Ed Roberts is largely seen as being the founder of the Independent Living Movement. When he was 14 years old, he developed polio and he was basically paralyzed overnight. Well, he went from a kid who was doing all of the things to being a young man who now was paralyzed, but didn't change. And really, you know, what, what we all have in common is the desire for accomplishments and for connection and to go out and build a life for himself. He fought to be able to go to the University of California, they didn't want to let him in. He used an iron lung quite a lot of the time, they didn't want to let him in. And they said your iron legs too big for our dorm rooms, you can't live in residence. But they eventually came up with a space for him to live in the hospital, on campus where he moved in. And then other disabled folks fought for the same rights. They fought for the same opportunities as Ed had to be able to live in this hospital, in fact, but away from home for the first time for many of them to go to school with the support they needed. So out of that really early accomplishment, they built the first independent living center in California. And this is where people with disabilities as we were talking about before the care model came from this movement centers expertise in the person with a disability so when real person themselves and that was a radical shift in where expertise lies. That's where the movement started. And alongside it came this academic movement around critical disability studies. But it just wanted to say that this was not just a context that existed in the US. Here in Canada just 40 years ago, we had young disabled people living in hospitals as well, for many years what's now known as Bloorview Kids Rehab hospital. For many years, that hospital was known as the home for incurable children. The were no community supports. Kids with disabilities lived there, the previous and the founding executive director of CILT, Sandra Carpenter, who we sadly lost earlier this year. But who was a great mentor to me and a great friend of both Karen and I, she and her sister lived at the hospital. That's where they lived for many years, that was their home. And a number of other kids lived there too. And there were stories about the hospital administrators trying to make the kids who lived there year round, were hospital bracelets, the kids sort of rebelling against that and moving away from it and really trying to carve out a space for life. And of course, when those kids aged out or view, the expectation was that they were going to live in long term care facilities that was going to be good enough to they didn't want that they fought and they work together and connected. And they made different options for themselves. The direct funding program is built by people who did not want to live in long term care, as was the incentive for Independent Living in Toronto, for example.

James Saravanamuttu [51:11] We just heard some really amazing initiatives from Alex and Wendy. Jeff also has some advice. And luckily, you can start trying it out today,

Jeff Preston [51:19] Try dating a disabled person, man. Try it out, you might love it, you might find out that it actually is not such a big deal. I think that ultimately, we need to open ourselves up to the idea that we often have a very narrow understanding of sexuality, a very narrow understanding of sexual attraction, a very narrow understanding of what are to be proper, successful, good, strong, romantic relationships. I guess the other things that they should know is that disabled people are absolutely sexual, there are some disabled people who may not be able to reproduce. But there are many, many, many, many, many disabled people that are. You can have a child with a disabled person, it doesn't necessarily mean that that child be disabled. And maybe it would be okay if they were as well. But a big part of that was about me embracing myself first. I think a big part of it was me becoming comfortable. And eventually pride and pride's not for everybody, eventually proud of the person that I am proud of my difference, comfortable in my own skin, as they say, and I did that self acceptance piece is often a really important first step toward other people then accepting you as well, that your comfort and your confidence, I think, in my experience, actually goes a really long way in terms of people not seeing you just as quote unquote, "a disabled person". I think in all dating, you got to bring something to the table, you have to be valuable in some way. And often for a lot of people that having someone who's confident, fun, nice, in many ways, that's often enough to form some really good worthwhile relationships. Yeah, embrace your difference. Embrace your disabled self, and know that there are people that will look beyond it, that won't just see the biomedical side of you that it might be hard might be a long journey. But it's possible. There are lots of us out here. And you can be too.

Seth Kibel [53:16] In creating this episode. I know I speak on behalf of James and the entire episode team when I say that the interviews and discussions helped us re-examine our own privileges, and understand that the issues that disabled people face have very little to do with their disability, and more to do with how our society and culture creates barriers and obstacles that make it so people that are different, become disabled. As Alex articulated, if society created disability, then it's effectively a design problem that we can hopefully work towards designing our way out of.

James Saravanamuttu [53:48] We truly hope that the episode helped you, our listeners become more cognizant of, and challenge your biases or perceptions towards disabled people.

Alex Haagaard [53:56] Disability is not monolithic. I think that's really, really important to understand. First of all, I think that is why Liz and I focus so heavily on this cultural and identity based perspective. Disability, your experience of disability as a chronically ill versus a non chronically ill person is very different. Experience of disability, if you're a black or indigenous person are very different than you know, myself as a white disabled person. So that's really, really important. Disabled identity is shaped by so many other sort of intersections of embodied and socio economic and racial experience. And for people who have disabilities that are medically visible that are acknowledged by the clinic, they're often denied agency over their own bodies, and it's anticipated that they have an inherently diminished quality of life just simply by virtue of living in an atypical body or mind. Their experience of being denied authority over their embodied experiences is that they're told that their body is unworthy that they're capable of so much less than they are. And I think it's interesting because there's that untold or less whole history of medically invisible disability. We have sort of the opposite problem, which is that we are told we can do so much more than we can. And when we assert that we cannot do something, we're told, you just need to have more willpower, you just need to be more disciplined. And fundamentally, it's the same problem, it's that our experiences of our body are being denied by those outside of us. And it teaches us that we don't have the authority, we don't have the agency to name what's happening in our own bodies. I think recognizing that a there's this dual history and it's not a clean break, not all disabilities are purely sort of defined by this experience of visibility. And not all of them are purely defined, as defined by this experience of invisibility, there are fluctuations of a wheelchair. So when people see me in a wheelchair, they perceive me very differently than when they see me walking with a cane. For example, there's fluctuation. Recognizing these two different dynamics that sort of exist where on the one hand, you're denied agency over your body, you're denied independence, and on the other your embodied experiences are denied and you're told that you just lack willpower and discipline is really important, and recognizing that they both come from a place of not affording people power to name their own embodied experiences and perceptions.

Wendy Porch [56:04] I think it's the system. I think that there is not a lot of conversation about disability within health care training, you know, which is why this conversation that we're having today is so important. I think Karen and I are both so excited to be here talking to you that people with disabilities are either defined solely based on the problem of their disability, or they're not seen that you're very hyper visible because of your disability and all of the problems that are defined within the medical model that your disability causes, or you don't exist in other spaces. The idea that there could be a disabled parent is not one that's commonly out there. I think in terms of the training that folks like yourself, get. I think that that's another reason why these sorts of partnerships that we have with Karen and with other researchers are so important because we need to broaden this narrative, you need to be able to know that people with disabilities can be anywhere, we're everywhere, same way 22% of the population, when we start to recognize that and start to build that into the way that we think about, for example, medical training, who is a parent potentially, who goes where then we will start to dismantle these kinds of ablest structures that have kept us out of those spaces for so long.

Seth Kibel [57:12] A very special thanks to our guests, Alex Haagaar, Dr. Jeff Preston, Wendy Porch, and Dr. Karen Yoshida for speaking with us and sharing all of their insights. And of course, thank you for listening.

James Saravanamuttu [57:24] This episode was hosted by myself, James, as well as Seth, Aditi helped conduct the interviews and Claire helped develop the content. If Nash was our executive editor, Mehran was our photographer, and Anukrati was the audio engineer.

Seth Kibel [57:39] Be sure to check out our next episode in two weeks, where we explore the impact of foreign aid and NGOs on global health. And until next time, keep it raw.

Yagnesh Ladumor [57:49] Raw Talk podcast is a student presentation of the Institute of Medical Sciences in the Faculty of Medicine at the University of Toronto. The opinions expressed on this show are not necessarily those of the IMS, the faculty of medicine or the university. To learn more about the show, visit our website rawtalk.podcast calm and stay up to date by following us on Twitter, Instagram, YouTube, and Facebook @rawtalkpodcast. Support the show by using the affiliate link in our website when you shop on Amazon. Also, don't forget to subscribe on iTunes, Spotify, or wherever else you listen to podcasts and rate us five stars. Until next time, keep it raw