CoastLine: The Ability Spectrum, From Olympic Athlete to Death

Jan 4, 2017

When you think about disability and how you define it, what comes to mind?  A child who doesn’t learn through conventional methods?  An older person who struggles to get groceries from the car to the front door?  Do you imagine a person in a wheelchair? 

One disability researcher says our binary view of ability or lack of it is misguided; ability spans a spectrum from Olympic-level athleticism to death – and we’re all somewhere on that spectrum.  On this edition of CoastLine, we explore how we look at disability and what impact those views have on all of us. 

Guest:

Julie Ann Scott-Pollock is an Associate Professor of Communication Studies at the University of North Carolina – Wilmington.  She studies personal narratives of embodiment and identity and looks at physical disability, eating disorders, and aging and memory.

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Rachel Lewis Hilburn: Julie-Ann Scott-Pollock, welcome to CoastLine.

Julie-Ann Scott-Pollock: Thank you so much. It's great to be here.

RLH: Julie-Ann Scott-Pollock, before we get into your areas of study, this area of research for you, looking at body perception, is personal. What sparked your interest to begin with?

Julie-Ann Scott-Pollock: Well, what sparked my interest— I always go back in time to some of my first memories. I was born with cerebral palsy. I have spastic cerebral palsy, which means how I walk is stiffer than how the average person would walk. And part of it is, the messages coming from my brain to my legs produce a reaction that would happen if someone stuck your leg with a pin—how you sort of jump. It's a little bit jerky. So because of that, I don't bend my knees or my feet as much. It's a stiffer kind of walk. And in the beginning when I was younger, that also produced a turned-over back. I was a little bit hunched. Also, my knees faced each other, and my feet faced each other. So I was up on my toes, and it was a bit more jarring to look at. And I remember seeing people see me and having to navigate. It's like, that look of confusion, that look of sadness—

RLH: How old were you when you first noticed the way people saw you?

Julie-Ann Scott-Pollock: Oh, it's one of my first memories. I'm about four, and I'm walking into a store, and it has a window for the door. I'm walking and I'm feeling cute, in this cute little outfit I’m wearing at four—whatever 4-year-old fashion was, it was pink and white, I remember—and I saw a mother and her daughter looking at me, looking kind of sad. And then I looked, and I realized as I was walking what they were seeing. I saw that my body produced sadness and concern for some people. So from a very young age, that reality was there, and I had to navigate that because for me, I wasn't sad. Life was good. But I realized that people were frightened or sad for me, in so many ways, and so I think it started very early. I think I became expressive early for those same reasons of wanting to put people at ease, wanting people to know that I was okay, they were okay. We could really all get along and be at ease with one another. And I think that's what really led me in this idea of narrative research, of the power of story, of the ability to connect and relate to people, with ability at the center of that.

RLH: And how has your disability changed over the years? You use the word “jarring,” that it looked more jarring when you were younger. How has it changed?

Julie-Ann Scott-Pollock: Well, when I was younger, my muscles had turned my feet in toward each other and they had also pulled so tight from all the spasming over and over again from these jerky signals, that my feet were perched on my toes, which then hunched my back to kind of balance. So through a series of operations, they lengthened those muscles in my legs. They actually sawed my bones in half, rotated them 30 degrees, and nailed them back together again. And so over time, I went from, “Wow, something is really wrong with her,” to like, “Huh, what happened there? Is she maybe recovering from a car accident?” Sometimes people when they see me at the gym are like, “Oh, you worked out too hard. Be careful. Make sure you heal.” I had a trainer come up, very anxious, saying, “I keep seeing you getting back on that elliptical, and until you feel, please don't.” He goes, “You need to leave. You need to let yourself heal.” I’m like, “Really, I'm okay. It's going to be fine.” Because you see, he immediately saw that this was an able-bodied person who as working out while injured. So it's changed in that way. Now, if you have a trained eye, it's clearly a spastic cerebral palsy walk. I had a retired physician chase me down at church once, saying, “Cerebral palsy, right?” And I said yes. He was like, “I knew it.” To someone who knows disability, it's very obvious, but other people fit it into their narrative of what they think it might be.

RLH: How do you feel about that? I mean, the guy at the gym, the trainer who is concerned about you, do you take the time to explain or do you just say, “Thanks, I’m fine,” and move on?

Julie-Ann Scott-Pollock: Well, you know it depends on how much time I have. I mean, I did say to the trainer, “Actually, I have spastic cerebral palsy, and this is just how I walk. I'm good to go.” He said, “I’m so sorry.” It's like, “It definitely was not caused by you. It was congenital. You're not responsible. I'm okay and thanks for looking out,” and he was fine. And we are able to have conversations—

RLH: The doctor in the church, proud of his own diagnosis from afar, is that irritating at all? Does that make you feel objectified a little bit?

Julie-Ann Scott-Pollock: It does in some ways, but I've learned over time that when people ask question, it’s promoting communication, and I've become a professor of storytelling. I believe in communication. I really think that interactions do shape our reality, that understanding identity—who we are and who others are—is all formed through that interaction. So if I shut down that interaction, I'm losing chances to recreate how people are thinking, to struggle with them to develop new understandings. And I enjoyed talking to him a little bit about it. He said to me, “If you had operations, was it just like this?” And I said I had, and you know, he had stories to tell. He wanted to talk to me about kids he knew that had had cerebral palsy and he had hoped that the operations had turned out as good as mine had. So he had a reason that he wanted to connect with me that day. And so, while I would have maybe liked just to go to my car and get out of the parking lot before all the cars, before we had to wait in line, it was okay to make that connection because I think he needed that connection to start processing what it meant to have cerebral palsy.  

RLH: So are people then who have obvious physical disabilities just automatically catapulted into this position of being spokespeople for whatever their particular disability is?

Julie-Ann Scott-Pollock: Well, you are and you shouldn't have to be. And that's something that I think is very important. Rosemarie Garland-Thomson is a great scholar on staring and the gaze and how we navigate that. And I think it's so important to remember that that person doesn't owe you any explanation if they don't want to. Communication does create interaction, meaning, and understanding, but it's okay to say, “You know what? I'm not up for meaning making right now. I just want to be left alone.” And so I think it's okay as a disabled person to say, “Listen, this is none of your business.” It's okay to give someone a snarky reply that shuts things down. I tend to not do that, but I have a different agenda, maybe, than someone whose agenda is just to get their groceries and move on without talking to you, who's standing in line.

RLH: You said “as a disabled person.”

Julie-Ann Scott-Pollock: I did.

RLH: And we've been taught to use person-first language: “a person with a disability.” Why do you make that choice? Why do you say “disabled person”?

Julie-Ann Scott-Pollock: I say “disabled person” because I don't want disability to be so uncomfortable, so stigmatizing, so sad that we have to change the rules of the English language to talk about it. In our language, we put adjectives first, and just like I am a brunette woman, a straight woman, an academic woman, and a white woman, I'm also a disabled woman. So for me, I want to claim that adjective-first, disability-first language because I don't find it as off-putting as perhaps the people who decided we should put it after find it, and I suppose in a lot of ways, it's a small piece of activism for me to try to normalize and be at ease with others and my identity and my body.

RLH:  You've spent time looking at personal identity around this, through what you call personal narrative scholarship. What is that? How do you do that? How do you conduct your studies?

Julie-Ann Scott-Pollock: Well, I do what's called open-ended interviewing, and that means I want who I'm talking to to direct what's important, what are the meanings. So I don't want to questions that are too direct because then I'm transferring what I think is important and they're answering those questions. So we talk about the topic. I study people who self-identify as physically-disabled professionals. So I said to them, “I'm interested in stories about what it means to be a physically-disabled professional. And I want you to begin where that story begins and end where that story ends.” And then what I do is I record that entire interview and we interact throughout it. And I will ask some questions to get things going if they need them. I have a reserve of questions to start thinking about if someone just doesn't know where to begin. And then I look for what's called an “emergent theme,” which means not a theme that I was expecting but rather what is coming up across these interviews, what people are saying over and over again, and that forms the analysis.

RLH: What is the primary emergent theme among disabled professionals?

Julie-Ann Scott-Pollock: There are several of them. One thing a lot of physically-disabled professionals talked about is this idea of needing to fit into a character of what it means to be a disabled person in the office. That's like saying, “I feel like I need to be a superhero,” or, “I need to be a tragic hero.” By tragic hero, they mean, “Remove yourself from the office because you're disruptive.” Right? But then wanting to stay meant they were turning into a villain.

RLH: Tell us about these characters that pop up.

Julie-Ann Scott-Pollock: It's this idea that because disability just makes us so uncomfortable, especially in the professional space. When you think about the professional space, there are all these rules. For instance, your hair is not supposed to be too big in a professional space, your makeup shouldn't be too dark, your perfume or cologne shouldn’t be too strong, you shouldn't be showing too much skin. So there are all these things we do to control the professional body and to make it so that we don't really think about the professional body when we're doing professionalism. And then here's this body that comes in that's demanding our gaze, that's very different, that is a disabled body. So a lot of times how that happened was this idea of there's this character feeling. I named these characters based on these descriptions that came up over and over again throughout these twenty-six interviews. And there was the superhero, the person where it’s like, “Really, disability is something that is completely overcome. This employee is better than the rest of us. Really, it's an inspiration, larger than life, better than an able-bodied person,” and so there is that idea where you can't just be an employee; you have to be the best one that's there. And then there's this idea of the long-suffering warrior hero: “Oh my goodness, look at that person not complaining, clearly in pain but always here and doing their job.” But this idea is that this person is really showing us what it means to press through. But what happens when someone can’t be the warrior hero anymore? There is this idea that you need to turn into the tragic hero, which is, “As valiant and wonderful it was to have you, get out because you're making things difficult.” Right? It gets to that point. And if and when that happens, you won't [get out], there's a bit of a villain that comes out of this person who is using resources. They can't do the job, but they're still here. They shouldn't be. We can't get rid of them, and it becomes a sort of adversary in the workplace. So across the interviews, I could place each interview into one of these spaces. And some people moved through them—started out as a warrior and then things went downhill. So those are kinds of ideas of how that happened.

RLH: As you look at these characters, what do you do with that information? Is that something that we need to change culturally? Do we need to look at how we set up our professional workspaces? I mean, how does that change?

Julie-Ann Scott-Pollock: Well, the idea is to really bring attention to it so we can start talking about what is making us so uncomfortable about a disabled body.

RLH: Because you're saying then that these characters emerge from able-bodied people's discomfort with their perceptions of that disabled person.

Julie-Ann Scott-Pollock: And it's difficult because unlike other markers of difference, other identity markers of difference such as genders, such as race, when we look at disability, it's the absence of normalness. Ability is normal. Disability means we're only defining you as different because there's the absence of being normal. And so, okay, what are we going to do with this? And that creates anxiety because, at some level—and I make this argument and there might be people who disagree—I think we all know disability because we all know we're mortal. We all know that we're living in bodies that will break down, that are going to change. We know for sure that's going to happen, and it's not that we know that it might happen. It really is going to. None of us are immortal. And so there is this fear, and if we can think about why we're doing this because— Instead of being with this fear and changing society to accommodate our changing bodies, changing workspaces, to accommodate the fact that bodies are going to change, we instead are trying to pretend that's not going to happen and push it out of our minds. So if we really embrace the fact that we're all living in mortal bodies that need to be cared for and need a culture and a space that will flex around and be willing to adapt as we need adaption, because if we had that knowledge, if we could know that, we could be with disability without that anxiety.

RLH: And that's where the notion of an ability spectrum comes into play for you. You've said that the spectrum ranges from death to Olympic athletes. And so all of us will encounter disability at some point in our lives, in one way or another.

Julie-Ann Scott-Pollock: Yes, I mean, unless there's a very sudden going from very able to do disappearing from this earth, we're all going to move across that spectrum and we’re going to be injured or sick. We move on this spectrum causally. The idea that there's this binary, that either you're disabled or not, really is an artificial sort of thing we've created in order to marginalize some of these bodies as disabled while the rest of us are all okay. When in reality, we're all moving.

RLH: We had a listener write in, and she says, “I think it's important to note that not all disabilities are visible. Some of us have physical or emotional different abilities that wax and wane. We are all temporarily able-bodied.” What would you say to her?

Julie-Ann Scott-Pollock: Well, there aren't always those markers that let people know that disability is there, and I think in a lot of situations the villains in the research have that sort of situation, like, “You look healthy. We think you're gaming us. We think there's really not an issue here.” It’s important to understand that you might not have the power to categorize someone and that's not your power to have. We have no idea what it's like to be in another body. We only know our own. And so that idea of that culture that flexes and moves and understands that people are going to need a need changing spaces and changing abilities. And that's because emotionally we change, physically we change. Sometimes when someone is experiencing pain, that pain comes and goes and there's different ways that this happens to all of our bodies and allowing that space of, it's okay to need emotional space. It's okay to need emotional healing. It's okay that just because you can't see why that person is being accommodated doesn't mean that accommodation isn't just, and if you need accommodation, we want a space that you can get those accommodations too. And I hate the word accommodations in so many ways because it sounds like other people are being benevolent to you when in reality, we all need changing, adaptable spaces, no matter what place and time our body might be in now.

RLH: So how do we use language around this? A few minutes ago, you explained why you choose to call yourself a disabled person and not a person with a disability.

Julie-Ann Scott-Pollock: Correct.

RLH: And you respect other people's choice to use first-person language. But if there is a spectrum, and if we're all somewhere on that spectrum and if our position on the spectrum changes throughout the course of our lives, how do we use language? What is a disabled body, and what is a normal body?

Julie-Ann Scott-Pollock: Well, I think “normal” is really a creation. There's really a social creation of what normal is. Normal changes with the culture, with the time, with the context. It's really this idea of who gets to be in the center, right? This idea of who gets to be in the center of culture, and who's going to be pushed to that periphery, that’s going to get these accommodations that we're going to benevolently give them. So the term “normal” is so problematic in so many ways. And instead of talking about normality, we could talk about how we all have different abilities, to look at the idea of ability. Instead of saying “disabled,” asking, “What are your ability needs?”

RLH: Does normal differ from culture to culture?

Julie-Ann Scott-Pollock: Oh, very much so. If we lived in some portions of Africa, if you can't walk five miles a day to the river and then carry the water back, you are a disabled, hindering person within that space, right? So depending on where you are, your ability needs will be different. There are some places where you need to be able to drive a car to function. There's other places where cars are really optional and not driving is not a disability, right? There are some jobs where needing flextime isn't really in any way causing any sort of ability disruptions to the office, but for some jobs, it does. So it really changes depending on space. And in so many ways, we find a disabled person as the person who is disrupting how we'd like to do things, right? Why are they disabled? Because they can't do what the rest of us are expecting them to do right now. And that's how suddenly we move from abled to disabled.

RLH: Can you sort of take us through what it's like for a person who is in, say, a wheelchair to go into a space that is compliant with the Americans with Disabilities Act—ADA compliant, considered accessible? And let's pick a public space like a theater, and there's this one spot in the corner down front where that person can go and sit, but it's compliant and accessible. Can you talk about what it's like for that person to go into that space? Do they feel accommodated? Do they feel stigmatized?

Julie-Ann Scott-Pollock: It's hard because it would depend on who that person was and how they're feeling about that space and I can say, I spent a very short stint in a wheelchair during my bone rotation, so I had a little bit of time, and I could talk about how fascinating it was, like, “Wow,” like getting in through the disable door is taking the scenic route. I’ve got to go all the way around here to get up this ramp and then in, and then there's one seat, it's right there, and if other people are there it becomes— For me, it was a lot of labor to go out. It was so much that I'd have to think, “Am I in the space to do this or am I not?” But my time in that wheelchair was temporary, which meant I could say, “Well, if that's all your life, all the time, if you use that wheelchair, if that wheelchair is your vehicle to access, that’s something that you're having to navigate.” And that idea of how wonderful it would be if all the seats in the theater were movable and that person could sit anywhere, or if we just had ramps going in so that you didn't need the scenic route in order to use the ramp and accommodate the stairs. What if you just could use any space and come right through the door? Because really, ramps aren't hindering anyone.

RLH: So you're putting forth the notion of a design concept that does away with stairs entirely.

Julie-Ann Scott-Pollock: Yeah. Why can't we just have a really accommodating space that, as our bodies change, we're able to still use that space the same way? That ramp being right in the front would be wonderful for me when I'm holding my three-year-old in one arm and my nine-month-old in the other with my five-year-old holding onto me. It would be easier for me to get into the movie theater as well, even though I don't need a wheelchair.

RLH: Are some states better than others for people who have disabilities? You had an experience moving to North Carolina from Maine. Can you tell us about that?

Julie-Ann Scott-Pollock: In a lot of ways, I would say some states are more diligent with ADA compliance perhaps than others for a host of different reasons. Money, where old buildings are, is there a way to renovate those buildings, how much new infrastructure is going up— So it's a lot of ways. It could even vary from regions of states. Some regions of the state are much more open to a universal design, which makes a space more flexible and accommodates all different kinds of abilities. So it can really change because it's expensive. Changing the physical space, making something ADA compliant is expensive. And it may mean the aesthetics you might want for that building are going to need to change in order for this to happen. And that's a tug, a push and pull.

RLH: Especially here in Wilmington. This so much of downtown Wilmington's identity is based on the fact that it's a historic place. So what would you say to people? You know, we have so many jewels in the crown of Wilmington, just downtown, that are beautiful historic buildings. What would you say to people who argue, you can't touch this building because it is reminiscent of an era and an important part of our history?

Julie-Ann Scott-Pollock: Well, I think that's a complex question. I mean, as a person who studies aesthetics—and by aesthetic, I mean not only things that are beautiful, I mean things that pull meaning and emotion to us because when we see that space, it's meaningful to us. But to assume that space cannot be meaningful and also open to different embodiments is a dangerous road to go down. There are people that, during the Civil Rights Movement, said, “But our all-white spaces are meaningful to us. We don't want integration.” There are people during women's rights who said, “Voting is a really masculine space, and you're bringing women into it. It’s changing it.” Well, yes, it did, and thank goodness we have those changes now. And so that idea of like, “Can we still preserve that space and make it accommodating?” Well, I think we can. We have some brilliant universal designers who can help make that happen, but it needs to be a financial priority that isn't just put on people who are trying run that business. It has to be important enough to the state and to the community to make those changes for all different kinds of bodies so that we can all be in those spaces together and to know so that you know that as your body changes through life, you can still be here too.

RLH: You had a driver's license when you lived in Maine.

Julie-Ann Scott-Pollock: I did.

RLH: And then you moved to North Carolina and went to get your North Carolina license. How did that work out?

Julie-Ann Scott-Pollock: That was a journey. I have been driving for a very long time, since I was 16 years old. I've never gotten a ticket. I've never been in an accident. So I consider myself a fairly good driver. And so, when I came to get my new license, they said, “You have to take a written test and then you’ll get your new license.” I said, “Okay, awesome.” So I took the test, I did great, and I was all ready to get my new license, and I said, “Oh, can I also get my disability placard?” And they said, “No,” and looked closer at my license before and they said, “We need to talk for a minute.” So they went and talked and came back, and they said I needed a road test. I said, “I do? I already took my picture for my license,” and they said, “Yeah, well, a driver with a disability needs a road test.” And I said, “Really, because you gave me my license.” They said, “We don't have to give a license to anybody because it's a privilege, not a right. You need to take a road test. We can demand anybody have a road test at any time.” So I took the road test. My three-point turn was a little rusty, but I did pretty good. And so I passed it, and then I got a letter telling me I had to go to a special facility at Duke where they would assess my driving ability as a driver with cerebral palsy. It was going to be hundreds of dollars to go get this assessment because I had cerebral palsy but wasn’t asking for adaptive equipment in my car. They were very worried about that, but I didn’t need adaptive equipment. So I called them, and I was on the phone forever with different people— Not really forever, because I'm not on there now, but I was on there for quite a long time. I finally got through and it was all these different operators saying things like, “Listen, we don't know if your feet can move to hit the pedal.” I said I’d been driving since I was sixteen-years-old, like, “You can it look up, I have a license. Of course, I've been driving,” and they're like, “Well, we can't know that for sure.” So finally after pushing and then calling a friend who's a lawyer who then also called, they moved the assessment to my local doctor so it would be free with my co-pay. So I went and they said I needed a physical anyway, fine. I fill out form, send it to them, and they sent it back saying they wanted me to go back and do another road test there. So I went back and did another road test there, and then I got another letter. And at that point, I started getting lawyers involved and it suddenly went away.

RLH: Julie-Ann Scott Pollock, I want to get a little bit into how people who don't have an obvious disability, physical disability or haven't known anyone who has lived with that, people who are well-intentioned but perhaps quite ignorant, some of the things they run up against. For instance, if someone has a physical disability, let's say they're in a wheelchair. Is it common for other people to assume that person also has a mental disability? Or maybe they're partially deaf?

Julie-Ann Scott-Pollock: Well, we'd love to say that's not true, but it is. I think a lot of times people hear that I have cerebral palsy and they're very surprised I'm a professor because cerebral palsy sometimes happens through traumatic brain injury at birth. They assume that traumatic brain injury can also cause cognitive challenges as well. So this idea of, “Oh well, I knew a person though, and they had both—” Well, yes, but those were two disabilities together. So can someone who is using a wheelchair also have an intellectual disability? Of course. Should that ever ever be assumed? No. No, never to assume that sort of question. So a lot of people do collapse them together based on that one person we saw or that one person we heard about. I know that a lot of times doctors will say— I remember having my son and my OBGYN doctor saying, “You know, I just can't wait to tell my patients who have children that have cerebral palsy all that you've accomplished and how great everything happened,” because they're clinging to this idea of that one story they heard. And so this idea of knowing that human bodies are so unique and how that body is experiencing illness, disability, emotions, thought is just so unique as to give that body space to teach you. And that doesn't mean you asking questions and being tutored right there. But you should try to observe and see what that person is needing and really, we’re such social creatures. Humans can understand and process and adapt to one another. We really can. So instead of coming with all these preconceived notions, interact in that space and get to know with time what that person is needing. And know that if people need help, they'll ask. And if they don't, you might want to say, “Do you need assistance?” If they say no, then you know to give that person space, to really allow people the agency to be in charge of their own experience when sharing spaces with you.

RLH: And so you’re saying, “Don't ask questions. Just step back and give that person space.” What are some of the other— Don’t do this. You know, people do this all the time to a person with a disability and the community of people with disabilities would like to say, “Please don't ever do this again.” What are some of those things?

Julie-Ann Scott-Pollock: I got together with a society of disability scholars, and we think of things— People with different embodiments than I have tell me, “Don't assume that you can touch somebody’s wheelchair.” In so many ways, the wheelchair has become an extension of that person's body, and they probably don't want you to touch it unless they're inviting you into that space. So if they say, “Please, push me,” well then, that's great, but don't assume that they want to be pushed.

RLH: Why is that important? Let’s hang with that distinction for a second because in looking at this, there are blogs all over the place about, “I'm in a wheelchair, and this is my life at crotch level. This is what I have to deal with. And this is what I want you guys to understand,” that's one of the biggest ones. Why is it so offensive for a person to come over and grab the wheelchair and start pushing it?

Julie-Ann Scott-Pollock: Well, I think the same way it would be offensive if somebody suddenly started grabbing your arm and forcing you to go in a direction you don't want to go. Because that wheelchair is facilitating that person’s movement through space, it's become an extension of the body. And in that way, because it's an extension of the body, treat it with the same respect you would treat that person's body. And that usually means not touching it unless you're very close to that person and you know that you've been invited in that space and that's okay to do.

RLH: If we start incorporating the idea of a spectrum more fully into our thinking and talking and dealing with bodies and different levels of ability, accepting that everyone has various levels of ability throughout their lives, what would that change in our culture? Why is that distinction important?

Julie-Ann Scott-Pollock: What it would do is really see embodiment as part of being human instead of something that we need to be frightened of and manage to avoid becoming one of those disabled people. Listen, all of our bodies are going to change and have different needs. And that means that we start looking at society as something we need to create to facilitate how our bodies are going to change, right? So universal design makes all of us move through space better. We all have emotional needs, and those emotional needs are changing all the time. So having that ability to be comfortable talking about all of us, what our emotional needs are at a specific time. So in a lot of ways, it makes it so we're able to talk about who am I now in this space, who are you now in this space, and what do we need to be in this space and live vibrantly together instead of sectioning us off as the disabled person who's going to need all these accommodations and me who's so normal that is going to have to accommodate them.

RLH: And would that also dissolve some of the shame around aging bodies, around bodies with different levels of ability? I mean, is shame part of this conversation?

Julie-Ann Scott-Pollock: Shame is central to this conversation, that stigma going on. Stigma, that idea of being sad for disabled people. When people would look at my body and feel sad, they were empathizing with shame that I didn't have and that I tended to overcome quickly because I was always in dialogue with people about my body and what it meant to be disabled. I was also fairly well-spoken from a young age, and could have these dialogues and conversations to resist that idea, but that is where that shame is. And that idea that something's wrong with me now and because something's wrong with me, I have to be grateful that people are allowing me to be in this space and how scary can that be, to be one of those people that now everyone is accommodating in this space. I think of this meme that goes around Facebook all the time that says, “I secretly want to punch slow-walking people in the back of their heads.” And I think to myself, “Really? So when I'm walking slow because I'm a little bit in pain today, or when I'm carrying my three kids, you're wanting to punch us?” That’s sobering. That's frightening. That's shaming to bodies that move slower and take up more space. We need to get to a point where we reject that because everybody's body is taking up space, and everybody's body is moving, and everybody's body needs to be able to move in this area. So instead of making this hierarchy of abled versus disabled, to really see us all moving together and moving in different ways with different kinds of means, whether those be the disabilities we can see or the disabilities that we can't see. But if we're mindful of the emotional and the physical and the intellectual that is being human and that all those are different, we could start combating that shame.

RLH: Is having a disability different for a white person compared to a person of color? Or is it different for a man compared to a woman?

Julie-Ann Scott-Pollock: Disability is one the identity marker and how that identity marker moves in our lived experience is going to be so person-specific. We argue a lot within disability studies, “Is there a disability culture or not?” And I would say that there are some disabled people that I come together with, and we sort of have this culture of what it means to move through space like we do. And so there might be this shared experience, but I don't even know if I'd call it a culture because when I think of my culture, I think of my culture of being Italian-American, I think the culture of being an academic. There's a different kind of idea there. Because disability embodiment is so specific and disabilities are so specific to embodiment, they tend to not as much have a culture as far as a personal, lived experience, though I will of course say that dealing with able-bias does bind people with disabilities with a shared understanding, even if we don't have traditions that I would put as part of a culture like I would for my ethnic identity or like, when I move into an all-female space, women's space. So there's different kinds of ways in that way that I would say. But we are such complex creatures that if what if you're dealing with racial stigma on a daily basis, if you're dealing with gender stigma, that might be at the forefront, that might just become more important or those might interact in ways that are complex because disability might be in some ways pushing you to the periphery of the dominant of that culture. So understanding that identities are so complex, we call this intersectionality—that all of our identities are intersecting simultaneously. We can't really divide them out, and how those identities are going to come together and how we are going to live them is just going to be so person-specific. I think of the idea of how I am a woman who likes to work out, likes to be active. And so there are some active cultures I'm a part of, but being disabled means I'm not invited to some of those spaces because I might not move as fast or I have more difficulty moving in sync. And so, while this might be our space of women who are fit, because I'm disabled, I’m not part of that space.

RLH: So when you take a look at a sector of the population that is marginalized in other ways, you mentioned racial stigma or gender bias, what about someone who falls into one of those categories dealing with that and also has an obvious physical disability. Do they have a harder time?

Julie-Ann Scott-Pollock: Oh, we would say yes. Compounded ability in systems of privilege, right? If you're dealing with racial biases, it means that you are having to overcome things that people who have racial privilege do not. You're facing barriers, you're facing tensions, you're facing all of these discriminations that this other person isn't. That's why in a lot of ways, I say I use disabled-first, but as a white, educated person, I have that luxury. The disability isn't so disruptive to my life that I don't feel I need that. I can say this is my piece of activism here, where someone else might say, “Listen, I'm dealing with so much stigma that I really want person-first language. That's helping me.” Or someone who is really dealing with racial discrimination might say, “Listen, I need to deal with my racial identity. My racial discrimination is at the forefront for me. And so, at this point, I might not be as much of an activist in this [disability] area even though it matters to me as well.” So the more levels of discrimination, the more marginalized, the less privilege you have, the more difficult your situation is. A lot of times socioeconomic privilege factors into disability. If you're disabled, but you have enough money to accommodate that disability, your experience is going to be so different than someone who is just fighting for the bare necessities financially to get by. So I would say when you pile on all these different kinds of ways we marginalize people, call them not center, call them not normal, the more of those things you are dealing with, the harder and the more challenging day-to-day interactions are going to be.

Sandy (email): I appreciate this conversation. Glad to hear your guest acknowledge the complexities of compliance that the Americans with Disabilities Act. It can be complicated to navigate affordability and aesthetics. I’m wondering if she could comment on the possibility of a significant backfire effect given the forced compliance of public buildings. In my observation, there are sometimes burdens placed on those who have to design and build or renovate that are truly over the top and probably unnecessary. This results in the public resenting the people these laws were designed to enable. This is very sad. Do you see lawmakers ever reconsidering or easing up on some of the more extensive requirements that frankly are simply unaffordable and redundant for many entities, public and private?

Julie-Ann Scott-Pollock: Well, I would have to know where those redundancies are. I can't say for sure. I don't know exactly what pieces of the law might feel so but might feel overwhelming, but I do know that's there. I know that idea of the expense can be overwhelming. And I think that's what we need to really be thinking of as lawmakers. If this is so important and it is, it's so important that our bodies are able to move through space, that as they change, they can. Are there ways to be able to help these businesses? Because we have to make it a priority. So let's as a society put both our efforts and our resources towards making this happen instead of having it all fall on, say, the one person doing those renovations. There has to be a way to have support of the culture, to say, “This is important enough that there's going to be some help to make this happen.”

RLH: Julie-Ann Scott-Pollock, such a pleasure having you with us today.