Attitudes Around Disability, with Sue Mann Dolce

Buffalo HealthCast co-host, Dr. Jessica Kruger, speaks with Dr. Sue Mann Dolce, who currently serves as the Associate Director of Accessibility Resources at the University at Buffalo.  In this conversation, we learn about the constantly evolving attitudes around disability, and what needs to change to ensure equitable treatment for all, regardless of ability.  Sue’s areas of interest and research include participation, disability studies and collaborative programming, as well as universal design and programming. She enjoys working with all members of the UB community to learn about, design and implement education and participation opportunities for everyone. Sue is also a Registered Yoga Teacher.   

Teaching Notes

Resources:
1. Ableism by Michelle R. Nario-Redmond (Includes poem entitled "Ableism" by Maria Palacios, 2017)
2. Disability Visibility Book and Podcast by Alice Wong
3. Disability Justice Concepts (various online resources) by Mia Mingus, Patty Berne, and the late Stacey Milburn (Mia and Stacey have both presented at UB
4. Crip Camp Documentary
5. Being Heumann memoir by Judy Heumann (who is also in Crip Camp as a teenager)
6.

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Transcript

Intro  0:00 
Hello, and welcome to Buffalo HealthCast, a podcast by students, faculty and staff of the University at Buffalo's School of Public Health and Health Professions. We are your cohosts, Tia Palermo, Jessica Kruger, and Schuyler Lawson, and in this podcast, we cover topics related to health equity here in Buffalo, around the US, and globally. In this first semester of the podcast, we're taking a deeper look at racism and health. We'll be talking to experts around the US, as well as individuals here on campus and in the Buffalo community who are working to remove inequities to improve population health and wellbeing. You'll hear from practitioners, researchers, students and faculty from other universities, who have made positive changes to improve health equity and inclusion.

Jessica Kruger  0:47 
I'm Dr. Jessica Kruger, and our guest today is Dr. Sue Mann Dolce. Dr. Mann Dolce's PhD is in Rehabilitation Science, and a clinical background in occupational therapy. She is a Certified International Yoga Therapist, and we're happy to have her on the show today.

Sue Mann Dolce  1:07 
Thanks, Jess, thanks so much for inviting me to be part of this.

Jessica Kruger  1:10  
As we get started, we're gonna start with an exercise that Sue would like to have everyone participate in.

Sue Mann Dolce  1:19 
So, if you're listening to the podcast, wherever you are, unless you're driving, or operating machinery of some kind that you can't stop, I'm going to invite you to join me in a centering. So it's a very simple practice. And you can do it in any position, sitting, lying down, standing, so you choose. And the very first step is choosing the position that you're going to be in. And the next step is to take a moment to notice your body and feel where it's supported. So for example, if you're standing, feel your feet against the floor. If you're seated, feel your feet on the floor, wherever they are, feel your legs and your hips and your back. And no matter where you are - and if you're lying down, obviously, you're going to be feeling a lot of contact. So feel what you feel. And then just slowly allow your arms to relax, your shoulders, your neck, and your jaw. And come into the space, noticing the sensations in your body, not trying to change them or judge them, just noticing. And then once you've done that, notice the breath, your inhale as it comes, and then your exhale as it leaves. Again, no judgment - we're not trying to change it. Just becoming aware. And if you're able to breathe in through your nose into your belly, and then release from the belly and out through your nose, you can choose that. But if for any reason that doesn't work for you, that's fine. Breathe in the way that does work for you. And then three full breaths this way. No hurry, taking your time. If you get distracted, that's fine. Just notice it and make a choice to come back, to being present in your body in your breath, to the degree you can. One more full inhale and exhale in your own time. Beautiful, thank you.

Jessica Kruger  3:47 
Thank you for that. Today we're going to talk a little bit about disability and learn about the definitions. So Sue, could you provide us with a definition of disability and the different interpretations it might take in different settings?

Sue Mann Dolce  4:05  
Sure. And I also want to start out by saying there's many definitions of disability, and different groups are going to talk about this in varying ways. And I'm always going to defer to the group that is speaking, because they may have a unique experience and interpretation. And that's pretty much an overall approach when we're talking about disability, because disability means and is experienced in a number of different ways for different people. But I'm going to go back to the definition under the Americans with Disabilities Act, which was originally passed in 1990, and then the Amendments Act that was passed in 2012. And the definition, the simplest part of that definition, is that disability, or a person is considered to have a disability, if they have an impairment that limits them in a major life activity. So you have to have both an impairment, and then be limited significantly - limited is the language - in a major life activity. And you can go to ADA.gov, and look this definition up, and there's also some other information there about that. So, I am really interested in this concept of impairment, Jess, because that languaging denotes something wrong, something less-than, something different, certainly. And difference is okay, I like the the idea of difference, or I would agree that most of us can appreciate that there's a difference, but not the kind of value laden idea of impairment. So we often think of it as variance, that you have a variability around something. So the way you see, the way you hear, the way you feel emotionally, and/or physically, the way you think or process information, the way you move, the way you move certain parts of yourself or other parts. But it also can denote chronic health conditions, whether they're chronic intermittent health conditions, or other health conditions that are pretty chronic all the time, that limit your ability to participate in a major life activity as designed. This gets to a tricky part, I'm not sure if you want me to jump right into this. But a lot of the issues that come up is because of how we design programs, activities, spaces, technologies, and virtual environments. So that's the definition that we work from, in our office. I work in the Accessibility Resources Office at the University at Buffalo. So that's the definition that we're working from. But I also work with a lot of community groups and other groups that are interested in exploring these ideas and concepts.

Jessica Kruger  7:20  
I think you brought up a really important point about language and how we discuss disability. I love the idea of the variance and changing that language right there. Instead of saying an impairment, I think that just has a total different feel than what we're used to talking about. So speaking of language, how does language influence our ability to provide individuals with disabilities equitable access to services and support environments?

Sue Mann Dolce  7:54 
Well, that's such a great question, and that, in of itself is a very long time, it might be a course. But anyway, where I immediately go to that is, the way we use language is really an expression of how we think about an issue, a person, etc. And then those influence how we behave in those situations. So for example, and probably the most prominent example within public health is, do we think that a disabled individual, an individual that describes themselves and identifies as a disabled individual, has insight and knowledge about how they experience the world? Or do we think, as a public health professional, that we know better? So if we are thinking about this individual as impaired in some way, and we're the trained professional, we don't tend to have a lot of professional humility, and really listen to how people talk about themselves and their experiences. And because of that, our programs and our spaces, all spaces, aren't necessarily designed so those individuals feel welcome in the space and valued in the space. So that's important. Another thing that comes up a lot is, should we say "people with disabilities," or "disabled people"? We use person choice language. So if the individual identifies and strongly identifies as "I'm a disabled person," I'm going to use that language with them. In many professional programs, we're trained, or we're training people, or educating people to say, "people with disabilities," with the idea of you do the person first, and then the disability, as if just there's something bad about being disabled, as opposed to a lot of people that are choosing to use - a lot of disability advocates choose to lead with disability. Not that they think that the disability is located in them. But they're saying, "I'm disabled, by the way things are designed, I'm a disabled individual." They see it as a statement of advocacy, calling out the culture per se, that they are disabled, even though they're human, just like the rest of us, have something to offer, just like the rest of us, can contribute to the day to day life of the community, the university, etc. Not to mention offer as much in the way of innovation as and excellence as any other individual that's perceived in any other identity group. So how we're thinking and talking about these things, I really think a lot of it goes back to people being able to express what they need, and be heard, and/or seen, whatever that means, whether it's through hearing or through text, etc, or being seen, being described, etc. So we'll see this all the time, and so getting used to your feelings about these things, noticing your language about these things, is a really important first step in getting curious about situations and starting to think about how you're choosing to use language in different situations, and not from the place of having to know, but having the ability to ask, in a way that doesn't put the other person on the spot. "How do you prefer to be referred to", it's kind of like, I would say, "I'm Sue, and my pronouns are she/her." So it creates a space for someone that may not use the same pronouns to know that I appreciate that. So we're creating spaces. And there's these ways that we can do that, that are really important for all of us.

Jessica Kruger  12:41 
I love the way that you're talking about creating that space and creating that opportunity. Because in public health, we really want to be centered on the individual, working to make people feel welcomed, supported in any sort of program or activity that we're doing. And bringing up that humility aspect, we talk a lot about cultural humility, but not so much humility in this aspect.

Sue Mann Dolce  13:10  
Well, yes, but disability is a culture. There's a huge disability culture and we need a Disability Cultural Center at the University of Buffalo. We have the IDC, the Intercultural Diversity Center, which is amazing, they do amazing work, but they're not resourced to do disability culture, and there's plenty to celebrate in disability culture. And there's a lot of art, there's a lot of innovation, there's a lot of technologies, there's just so many things to celebrate. So that's a thing to think about when we're thinking about cultural humility. Why aren't we including disability within that, right? So because disability goes across all other identity groups, no matter what race, ethnicity, orientation, etc, there are going to be disabled individuals in that group, whether it's visible or invisible. So I think that's an important thing. Then the other component, I had an experience with a friend/colleague, where they needed a ride to get vaccinated, because the vaccination site wasn't near public transportation, that they could easily get to the site. So this individual doesn't drive, they have a physical disability. They also don't use a power chair or a wheelchair of any kind, or even a mobility device. But they do get around a little bit differently than what we would think of as temporarily abled people. So I said, "Sure, I'll take you." So dropped them off at the site. Okay, there's a curb, a significant curb. There's steps going down into the site, there's no handrail. And then one of the public health workers comes out and starts talking to my colleague, who by the way, has a PhD in disability, in American history and disability studies, and starts talking to him like he's an insect. "Oh, honey, let me help you," and being somewhat, I would argue, patronizing - it would be like the most generous term I could think of. And I'm cringing, because, you know what we felt like going into get these vaccines. It was not comfortable anyway. Could you imagine that, on top of it, so physically unsafe for him, and then being treated that way? So what is that individual thinking? That's my question, because I know they didn't intend to be, in any way, inappropriate. Their intention was to be helpful and welcoming. I know it wasn't perceived that way. And then the design of the site; why is it not right on public transportation? Why is there an entry that's not fully accessible? Why would an individual who moves differently need someone who clearly can get around without support if it's designed appropriately? So those are the kinds of, it's so simple, once you see it, right? So the whole point here is to get people to start thinking about these things and seeing it. So when you're in a position where you can make a design choice, that you're doing an informed choice. And when you you're not able to do a design choice, and let's say you do need to have someone welcoming people, that they treat people with some respect and dignity. So those would be my main points about these things. So it all goes back to attitudes, awareness, which circles me back around to this term. Ableism. Do you mind if I talk about ableism?

Jessica Kruger  17:29 
I'd be happy for you to talk about ableism. But first, you used a term that some of our listeners might not be aware of: temporarily abled. Could you explain that?

Sue Mann Dolce  17:39 
Yeah, temporarily abled. I would suggest that most of us will experience being disabled at some point in our lives, whether it's temporarily, we have an injury, or a surgery, or a health condition that's resolved, so we experience that. So that can be a temporary kind of disability, or as we grow and experience the world, we may have some things develope that are more chronic, and then we become limited. So a lot of times, I think, probably 15 years ago, we would be at meetings, things people would say, "Oh, they're just a TAB." So Temporarily Able-Bodied, right? But, within the disability advocacy communities, and there's many, they focus on individual disabilities, and then overall disability. There's an awareness that these things are fluid, there's a movement to them. And I think most of us and our listeners have experienced that. Whether it's you or someone you love and care about. Once someone has experienced these things, you tend to be more aware of them and appreciate them in a different way.

Jessica Kruger  18:58 
That's so true. I personally, was injured recently and had to go get a handicap parking permit. And in the city of Buffalo, that's a real challenge when you are on crutches, because it's in an older building. And that older building, there are stairs. It's at the lower level.

Sue Mann Dolce  19:16 
In City Hall, right?

Jessica Kruger  19:18 
It is in City Hall.

Sue Mann Dolce  19:18 
Down that long corridor...

Jessica Kruger  19:20 
Long corridor and very back corner of the basement and that tells you something.

Sue Mann Dolce  19:28 
Tells you a lot.

Jessica Kruger  19:32 
So circling back to ableism, can you describe that and its prevalence in today's society and where we see it?

Sue Mann Dolce  19:40 
Yes. I first heard this term at UB when Leslie Freid, who's an amazing disability advocate and among other things, an excellent mutton dancer, yoga teacher, etc. She was here doing some scholarly talks and other work and she did a talk about ableism. And ableism is essentially thinking that everyone does things the way you do. So you're ableist in the way you design things. So you're designing for able-bodied people, typically-abled or able-bodied people. And when I say able-bodied, I don't just mean physical, I mean sensorally, psychologically, motorically, all the different aspects of living, and of course, multiple aspects of that wants to for a lot of people. And so how are we ableist? So it's like a lot of the other isms. It's just actually like that. So for those of us who experience the world as designed, in general, what does that mean? We turn on our computer, we can access it through a mouse, we can see it, we can navigate the screen by seeing, we can choose to leave and get up and go get something to drink, we can leave the building and go up and down stairs, we can see the controls on the elevator - we just expect all those things. However, if you move differently, see differently, hear differently, that's not your experience of the world. But that's still how the world is designed. And the world is designed that way, because most of the people designing the world are typically abled. So they're being ableist in their design, as opposed to using universal design or inclusive design, which is very interesting. We have a whole of the Inclusive Design Environmental Access, here at UB over in the School of Architecture and Planning, which is amazing. Go to their website, beautiful, amazing work. We have a whole center that's been funded for years, is known internationally, but we still don't design things for access. We're much much better than we've ever been. But it takes time. But the single most important thing, and this goes across every research study that I've read, and I've read quite a few, is it's the attitudes towards people, disabled people that have the biggest impact. Design is essential. But of course the attitudes feed the design. So attitudes always come first. It's like when we were talking today, I said, I think we need to start with attitudes, because it is the biggest barrier. And so doing the work that we can do to explore this on our own, to reflect on how do we think about this? And again, not in a judgmental way, but in a getting curious way. Like if I'm working in the office, and someone comes in, that moves differently or sees differently, do I resist that in some way?  Do I go, "Oh man, this is gonna be such a drag, or "I don't know how to do this," or "We don't have an exam table for that," or, you know, fill in the blank. In some way, we then project that back onto the individual, and they don't feel welcome. Even though the design issue is on our end, you know, maybe not us personally, we didn't design the office, but we work in that space. So working with our colleagues to say, "Hey, I noticed this today, are there some things that we could do to address this?" Often, there's not a lot of real material things we can do. But we can shift practices, we can shift how we're approaching it, how we're thinking about it, we can schedule differently. So we can take more time in a way that doesn't make the provider feel rushed, and then that gets projected onto the individual, like there's something wrong with them, because it takes them twice as long to walk to the room. That it takes them, you know, fill in the blank. So these are all amazing opportunities, but it starts with us reflecting on, when we get that feeling of going underneath it and thinking about okay, why am I feeling this way? Why am I apprehensive to work with this individual? What kind of support do I need, or does our space need to create change around this? And no, it will take time. You don't have to do it in a minute. But getting curious, this is always where we're going to create the most change over time.

Jessica Kruger  24:40 
Really challenging biases and pre-existing thoughts. Speaking of that, we see so much media every single day. And in that media, it seems to influence part of that ableism that we're talking about. Could you speak to that?

Sue Mann Dolce  24:58 
I could, but there's someone who could speak a lot better to this, who is Beth Haller, H-A-L-L-E-R. And she has a book called "Disability in the Media." Excellent, highly recommend it. She also has a few blogs and different things that she does about disability in the media. Beth was here, did a public talk here at UB on South Campus, pre-COVID. She's quite an activist. So in terms of disability in the media, the short answer to this is pay attention to media. There's two primary tropes or ideas that we'll see in the in the media, about disability. It's disability and in disabled individuals, and the charity model. "Oh, these poor people, we need to take care of them." And then the other is the "Super Crip." Look at this amazing individual, disabled individual, and what they accomplished. They're amazing, right? So what we don't see often is just day to day people, living their lives, just like everybody else. Disabled people are part of our community every day, all day. And we're not necessarily seeing those people represented in the news. So thinking about, what is that about? Part of it is over half the people with disabilities have invisible disabilities. So you may be seeing people in the news and hearing about people in the news who are disabled, but they're choosing to not disclose that, which is fine. But a lot of the reason that they don't disclose it is because of ableism and negative attitudes and the stigma of being perceived that way. So I have a personal experience of this. So pay attention to what happens when I tell this story, for yourself as you're listening. So I went undergrad for OT at the University of Buffalo. I love OT and I love the University of Buffalo. When I was an undergrad, I had a fairly significant mental health issue. And this was a long time ago, we didn't have the same supports that we have now. And I didn't have a lot of support in my personal life related to this for a variety of reasons. And so it was very, very difficult for me for a while, but I figured it out. It's actually when I found yoga. So I've been doing yoga and meditation for years, because it was a huge help. But I also found support through professional providers and medication, etc. So I was very lucky that I had access to these things, and so figured that out. And for years, I never disclosed that; that I have a mental health disability because I have a history of it. So the fear of disclosing and being overlooked in for promotion, hiring, etc, is very real. And I can see when I'm talking to individuals, if I choose to share that. And often people will say things to me, like, "Oh, I'm so surprised." And I'm not, you know, sometimes "I'll say what does that mean?" And they say, "Well, you don't act like you would have a mental health issue." And bingo, it's like, what does that mean? What did people with a mental health issue act like? Someone has an idea of that. The person has an idea of who that is. Right there. That's the underlying issue related to ableism, attitudes, stigma, etc. So getting underneath...now, I disclose all the time if it's relevant. But how did you feel, listening to that? Knowing I have a PhD, knowing I work in this area, I mean, unless you've heard me say this before, disclose before. So how we think about people, the assumptions that we make, are merely that. They're assumptions. And we all know what assumptions get us, right? So going underneath, thinking about it, and until more people can really claim their full identity, because we've created a culture where that's okay, where you're not going to be retaliated against in some way. So these are really important concepts to think about and to explore. And again, I can't emphasize enough, the people that I was just referencing who would ask those questions, I totally understand. It's not like I'm judging them, I understand where they're coming from. But them having that moment and noticing it, and my gently calling attention to it, hopefully, is the beginning of them exploring to create change, because if we're all doing this, we will continue to create change. Some of us have the luxury of having an invisible disability, but many, many people don't. And they don't get to choose, they're treated, they have to be ready at any moment to be treated disrespectfully or not be included or not feel welcome in a physical sense, or in a environmental, attitudinal sense.

Jessica Kruger  30:58 
So it sounds like there's a lot that all of us can do, getting curious, challenging our biases, thinking about how we're feeling as we're interacting with any individual because we don't know if someone has a disability.

Sue Mann Dolce  31:14 
Right, exactly. And asking, but not asking so that the disabled individual has to do all the work. The burden is not on the disabled person. And we need to be cognizant of that, too. So this is the other big thing that comes up a lot, is the over ask, you know, can I help you with that? Can I do that? Can I do this? I did it Saturday, I was with a friend at a market and they had a couple bags, I had a couple of bags, but we encountered some stairs we didn't know we're going to be there, because there was no signage telling us. And I immediately just turned around and said, Oh, let me take your bag. And they were like, I got this. So I was like, Okay, great. So, you know, back off, and I could really hear them and appreciate that, right? So the over ask - implying that someone's not able. That person hadn't asked me, they weren't struggling in any way, there was no overt need. But I stepped in immediately. I have to own that. And acknowledge it, "Sorry about that." "No problem." So it's not like these big things. It's these ongoing little things. And I make mistakes every single day. Like I just expect to make mistakes, I don't love it. But I do it. And then I repair it, without it being a burden on the other person, meaning not calling them out on it, not making a big deal about it. None of those kinds of things. And we hear these same concepts in other conversations about other people who do things differently than we do, for whatever reason related to identity.

Jessica Kruger  33:05 
Well, it all comes back to humility. Really thinking about how you can learn and grow as an individual, and be okay to make mistakes, because we all do. We're human, right?

Sue Mann Dolce  33:18 
I agree. And then as professionals what we uniquely can offer, but not having that professional identity override the humility, right? So the number one thing about healthcare disparities, disabled people tell them, one thing they say is, "Listen to us." Right? Listen to our experience of this. But you hear the same thing about the maternal health of black women, like the white version, not listening to our experience, not listening to what we're telling them, etc. So we hear this, it's the same thing we hear over and over and over again, for people who systems are not necessarily designed for, quote, unquote.

Jessica Kruger  34:00 
Speaking of that, thank you so much for being part of this podcast and for all of our listeners for listening, learning, challenging, and getting curious. Any last words?

Sue Mann Dolce  34:12 
Just thank you so much. And thank you to all of you who did the beginning centering practice with me. I appreciate that too. I could feel you out there.

Jessica Kruger  34:23 
Thanks so much.

Outro  34:32 
This has been another episode of Buffalo HealthCast. Tune in next time to hear more about health equity in Buffalo, the US, and around the globe.