Ableism as a Social Determinant of Health

**This encore episode was recorded on March 22, 2022 **

Rose Ewald, a self-advocate and PhD student in the Public Health Education department at the University of North Carolina at Greensboro, discusses health equity for people with disabilities and ableism as a social determinant of health (SDOH).

Transcript

- This is Katrin with Disability Rights New York. Welcome to our podcast, Empire State of Rights: Closed Captioned. We are here to bring you information on the most relevant topics regarding disability rights and advocacy. Today, we welcome Rose Ewald. She's a self-advocate and PhD student in the Public Health Education department at the University of North Carolina at Greensboro. We're here to discuss health equity for people with disabilities, and ableism as a social determinant of health, SDOH. Rose, it's so good to see you, and talk to you again.

- Lovely to be here; thank you for having me.

- Well, thank you for joining us. Rose, we have had the opportunity to speak to each other before, but let's tell our audience a little bit about yourself, and how you just, how you became a self-advocate.

- I worked in corporate America for about 20 or 30 years, and I was having health problems that made it clear that I couldn't keep working a 80 and 100 hour work week. And so, I decided to go back to school and get a degree in something that I really was interested in, which was not accounting. And so, I started at UNC Greensboro in 2012, I got my bachelor's in nutrition science in 2016, and I got my master's in public health in 2020. The first class after pandemic shut all the campuses down. So I didn't get to walk for my graduation, but that's okay. And now I'm a public health PhD student.

- And as you were getting your masters and your bachelor's, you started to notice some things around campus. And, can you talk to us a little bit about that, and how that influenced not only your work moving forward as a PhD candidate, but as you really started to look at advocacy as a part of the work that you're doing?

- Yeah, the big difference for me was that my muscles became weak enough that I needed to start using a power wheelchair during the middle of my master's program. And that really opened my eyes to the barriers on school campuses, especially in higher education. Not just the physical barriers, but the programmatic and process-oriented barriers. And the, "This is how we do it" about it. "Too bad it doesn't work for you," that kind of typical... And I had been able to pass in corporate America as, quote unquote, normal, without a disability, but once I was in the wheelchair, obviously everyone can look at me and know I have a disability. So it's been interesting seeing how people's interactions with me have changed because I'm still the same person. But in many times I am ignored or disregarded. So that's been quite eyeopening. And then, I realized in the Public Health program, and I don't know if it's just our school or all schools, they confound the concept of disability and chronic health, chronic illness. And so, I really try to advocate for distinguishing between them because disability and chronic health, or chronic illnesses, are not the same. But in the way our program was presented, they are talked about as if they are synonymous. And so, I'm advocating for awareness around that. And I'm also advocating for students with disabilities to have greater voice on the campus, and to have their needs considered when programs and processes are put into play.

- And a lot of what we're talking about is ableism, right? You know, as we talk about moving from an invisible, or a not-seen disability, to a disability that became more seen, or more apparent, you noticed changes in the way that not only people were responding to you, but also how you were able to respond to campus. And I think that's-- for me, that is such a crucial part of learning about ableism. And it certainly isn't just how other people or other systems are responding. It's also how do campuses, or buildings, or transportation, how is it that that now you are interacting with differently? And so, as we talk about ableism... And these are systemic issues. So, we did just talk about is higher education, it's transportation, it's our healthcare systems. And so, talk a little bit about ableism as a systemic social detriment.

- It is a social detriment. It absolutely is because when the world is designed for people who can do things without accommodation, it instantly disables people who need an accommodation to do it a different way. That is a detriment. It absolutely is. Social determinants of health are the non-medical causes of health inequity. Things like poverty, and violence, and lack of education, and not being able to get a good job. Those are things that public health tries to address. And so, I felt like in Public Health Education, it was a perfect place to try to advocate for, "let's have a box for the people who don't do it the way people without a disability do it." For example, there are lots of public health programs, lots of programs at the Y, and, you know, everywhere in society for being healthy, staying healthy, avoiding chronic illness. But they all assume that you can exercise. So if you cannot exercise, there isn't a box for you, right? So how does a healthy person with a disability not end up with a chronic condition later in life? There isn't any consideration of that.

- I think that's such a good point. And it brings it back to what I wanted to ask you to really clarify for everyone. In the beginning, you said chronic illness and disability are not the same and talk a little bit about that, so our audience understands what we're talking about.

- Sure.

- And I think that was a really good example of how those two things are not synonymous.

- Right. So I'll give you a good example. You can have a person who has an amputation. Missing a limb. They are at no more risk of getting diabetes than any other person in society. The only thing that has happened is that they're missing a limb. If you have a person with chronic condition like diabetes, they can have an amputation later in life if they don't manage their blood sugar well. They can have blindness, they can have kidney failure. So they have a chronic illness that eventually leads to a disability. And I think that's where the confounding comes in, that people with chronic illnesses typically have a disability later in life. But for a younger person, especially, a person who has a disability, they are at no more risk of a chronic illness than any other healthy person. And that isn't part of the way society looks at us. If you have a condition, then you automatically are considered sick, or in ill health in some way.

- Right, that's a really great definition of both and good examples of how our audience will be able to distinguish the two terms moving forward. And so, when we spoke a little while back, we talked about a conference that you attended, and something that happened there that really changed not just your life, but what you were doing and how you moved forward in putting together some policy that changed the way that things were done on an academic level. Can you talk to us a little bit about that?

- Yes, I helped to write policy that was approved by the Society for Public Health Education that brings ableism and disability into the conversation, brings it into their educational efforts for their public health practitioners, brings it into public health practice; they are actively making changes and adjustments in how they present material at conferences. The conference that they just planned, they actually did an audit of the hotel facility and the restaurants, and they made sure that they had reserved, in their block of rooms for the conference attendees, they had reserved them handicap-accessible rooms. Because I called and tried to get a room, and they're like, "Well, we don't have any in the block, so you have to pay full price." I was like, "But I'm coming to the conference." Well, "But they didn't reserve any of those rooms." So it's just little things like that, that once they became aware of it, they were very proactive about making changes, educating their practitioners. At the conference this year they actually have a plenary session on disability and ableism. I have never been to a conference where there was a plenary session on that. So it's really wonderful to see just a simple bring it to their attention, and it had tremendous downstream effect, very exciting.

- That is exciting; it's really fantastic to hear that there has been such progression around this being brought to their attention. I do think that this also is part of the conversation about ableism systemically, in planning of events. And having accommodations be an afterthought is really something that is systemic, something that if you are not thinking about it from the very beginning, it becomes something that you need to go back in and do later. And so, when we think about our institutions, and transportation, and our medical systems, these all seem to be pretty big areas where we're trying to have adjustments made after the fact. In your experience, do you see progression in any of these other areas? Obviously, you're in North Carolina. We're in New York State. There are some differences there. However, on a whole, it seems like there's more awareness now than there has been, particularly, maybe because of social media, or because of awareness especially with COVID when we saw ASL translators everywhere for the first time, which is great. What have you seen as far as your-- the institution that you're attending? Any strides forward in these areas?

- Yes, we have a new director for our Disability Services Office, and she has really made a huge difference on the campus. Her approach is, "I'm here to help you succeed," right? And that's really different from someone who takes an approach like you're just trying to get away with something. "You're just trying to get extra time on a test, you don't really need it." If you have a Disability Services Office on your campus that is suspicious of the students' needs, they aren't gonna get their needs accommodated. Now, there are still systemic issues on our campus. I think those are issues on every campus. Like, there's a fairly new building. The elevator broke and it took them six weeks to replace it. They had to actually replace the elevator. So anyone that had a class in that building, on other than the first floor, could not get to class for six weeks if you needed the elevator. This is the only elevator in that building. So that kind of lack of fore-thinking does have an impact on students. So what I'm advocating for is, if you have students who're registered with the Disability Services Office, you now have a mobility barrier if there isn't an elevator. Those classes that they're registered for should be flagged and they should be assigned to classrooms that are on the ground floor, so that if the elevator breaks, you don't need the elevator for them to still be able to get to class. It doesn't inconvenience anyone else. They can take the stairs. But there should be a way to make that work. So I'm advocating for things like that. Let's work around the barriers that are there simply because this is how society functions; which is really ableism. But let's find a way to be proactive so that students don't pay the price if something breaks on the campus, right?

- Right, and I think that language is so important, right? We're talking about whether it's accommodation, or modifications, or really taking a look at what barriers exist. And they can be physical barriers; they can be emotional barriers; and a lot of times, that's language that incoming students may not be familiar with. And also, teachers may not be aware of what those words mean or how they actually are functional, that's functional language too. Let someone know that this is not working for me. And so, when I think about higher education, and education specifically around language, it makes sense that these are things that as we do orientation, or even in high school-level, letting people know what these words are, what they mean, and how they may and more than likely, will affect every person at some point in their life. Talk to us a little bit about how the language. Not just in the policy that you helped write, but also in the way that you're able to interact with your professors, your peers, and the organizations that you're working with. How is it that the language, whether it's changed over time, or do you see things, language specifically, changing to be more accessible itself to the general population?

- I think so. I think the Black Lives Matter movement and the conversation that we've been having, especially in higher education, around white privilege and racism, I can draw parallels now and say able-bodied privilege is similar to white privilege. It gives you an advantage that you have not earned, that privileges you over someone that needs to do something in a different way. It's not the same as racism. I'm not saying that racism and disability are the same. But I'm trying to draw a parallel where people can grasp the connection between able-bodied privilege and ableism, and white privilege and racism because they harm sections of society in similar ways. And I would love to see... When we talk about equity, diversity, and inclusion, typically we're talking about race, gender, and sexual orientation. We are not currently bringing disability into that conversation. But I know that the segment of the population in the United States that have disabilities, according to the CDC, 27%. So we are the largest minority group, if you will, in the country. But we are not on people's radar. And so, the language, that equity, diversity, and inclusion sounds good, but we are not yet visible in that conversation. So I am pushing for greater visibility, and calling people's attention and awareness to the fact that you're skipping an entire group of people who are disadvantaged by not being included in the conversation.

- Well, and certainly there's the intersectionality issue as well, right?

- Absolutely.

- Each one of these areas do not stand alone. So we're really talking about a whole person,

- Yes.

- really is that we're talking about not each group, we're talking about a person as a whole, and how we are being viewed. So I appreciate your explanation of that. And so, as-

- And it is- It is not additive, it is multiplicative. So the disadvantage and the barriers, if you have a person of color who is disabled, or a person with non-binary gender identity who is disabled, the disadvantages to that person are multiplicative, compared to if they just had one or the other identity. So it really is important to recognize that.

- The compounding issues. That's something that we've been talking about over the past couple of days. And certainly, as we think about intersectionality, again, a word that is being used more widely; however, sometimes people are not really sure what is meant by that. The reality is that it's not an "or." It's an "and," right? So, "and," "and," "and," because we are multifaceted people, and certainly not just one, we don't fall into one area. And so, as we think about moving forward, and of course, thinking about the medical profession, right? And institutions, when we talk about disability and chronic illness, especially in the fact that they are not interchangeable. What do you think we can ask for or can be done to really make that distinguishment clear? As well as, how then can we be accommodated in that area?

- Yeah, I think the medical model, which is what we started out with, the medical model has kind of been the primary model for the last 200 years. The presumption is that I am broken, that there's something wrong with me that can be fixed. And that if they do this treatment or that therapy, then I will be better, and I will be able again. And if you have a person with a chronic condition, rather than acute condition, where it isn't gonna go away, and it isn't gonna get better, there's a lot of frustration in dealing with the medical model, because they're built around fixing people, right? The social model of disability, which is what we've been talking about, says that society, and the structures in society, and the attitudes of society are what disable a person. So it's like, you disable a function on your cell phone if you don't want something to pop up on the screen. You turn it off, right? But in the medical world, I think the doctors, and nurses, and therapists get frustrated when they do everything they know to do for you and it doesn't make you better because that's their goal, right? But the premise is that if you have a difference in your ability, that you are somehow broken or less than. And I think until that model changes so that there's a recognition that we all have differences of ability, we all have things in our bodies, mentally or emotionally, that are different from other people. So it isn't necessarily that there's a particular standard that we all have to meet in order to be considered okay, right? There's a lot of ableism in the medical community. I have had doctors say to me, "Well, you know, we're sending a lot of energy trying to diagnose something that can't be treated." And they don't wanna do tests. And I'm like, "I have the same right everybody else has to know what's wrong with me," right? And even think about the language there, "what's wrong with me?" That's how we describe it, right? But that's how it's thought of, so I don't know if there's a way to fix that. I think that the way doctors, and nurses, and medical people go through their training, there's kind of the 95% of the people are like this, therefore that's the standard. And anybody that's different from that is viewed as something that needs to be fixed. I don't know how to change that.

- Well, here's hoping with more students like you, and more students getting into programs that are not just exploring disability, but are really learning about it and trying to make systemic change. That's my hope, anyway.

- Yes.

- And Rose, it has been so great talking to you. And is there anything else you wanna let us know before we sign off today? I feel like we could speak for hours on this topic.

- We could.

- Yeah.

- What I would say is that I am working toward having enough students with disabilities graduate from colleges, and universities, and medical schools, that researchers are no longer doing research on us. That we are doing research with the community that we are a part of, and that we can approach it from the understanding that we have, having lived in that community of differently-abled people, that the research will stop being like looking at bugs under a microscope, or cells on a Petri dish, and start being a collaboration with the community, so that there's greater understanding. I think that would go very far in getting rid of ableism. That's my goal.

- Certainly would. Rose, thank you again so much for your time today.

- You're welcome.

- Always a pleasure, and I look forward to talking to you again.

- Lovely. Me too, thank you.

- [Narration] Empire State of Rights: Closed Captioned has been brought to you by Disability Rights New York, your source for disability rights and advocacy. If you enjoyed our program, make sure to subscribe, like, and share this post. If there is a subject you would like us to discuss, please email podcast@drny.org or comment below. Tune in next Wednesday, where we'll bring you more information on disability rights in the state of New York. The closed captioned and ASL version of this podcast is available on our YouTube channel. To listen to more Empire State of Rights: Closed Captioned. follow us on Apple Podcasts and Spotify.