Across the globe, there has been increasing acknowledgment of injustices such as health inequities, racism, and the vital changes needed to address these disparities. One such group often left out of the equity, diversity, and inclusion focus is people with disabilities. In this panel discussion, panelists shared advice and insight into their intersectional identities and experiences to help us learn how to develop a culture in which individuals are empowered to speak out and ultimately add to efforts that move our campus forward towards greater accessibility for all.
RyLee Curtis: Good afternoon, everybody. My name is RyLee Curtis, and I serve as the director for community engagement for University of Utah Health. University of Utah Health has been a partner organization in planning this panel discussion. I would like to take a brief moment to welcome our panelists, our moderator and our attendees today to learn from the experience of others. Thank you so much for joining us, all of you. I know how hard this group has worked to set up a meaningful dialogue on this important topic.
Before we begin today’s discussion, I would first like to recognize that today, November 11, is veterans day. It’s important to honor those that have served the country in war or peace and to thank veterans for their sacrifices.
So, thank you to all that have served.
Additionally, I would like to share with you the university’s recently adopted Indigenous Land Acknowledgement:
The University of Utah has both historical and contemporary relationships with Indigenous peoples. Given that the Salt Lake Valley has always been a gathering place for Indigenous peoples, we acknowledge that this land, which is named for the Ute Tribe, is the traditional and ancestral homelands of the Shoshone, Paiute, Goshute, and Ute Tribes and is a crossroad for Indigenous peoples. The University of Utah recognizes the enduring relationships between many Indigenous peoples and their traditional homelands. We are grateful for the territory upon which we gather today; we respect Utah’s Indigenous peoples, the original stewards of this land; and we value the sovereign relationships that exist between tribal governments, state governments, and the federal government. Today, approximately 60,000 American Indian and Alaska Native peoples live in Utah. As a state institution, the University of Utah is committed to serving Native communities throughout Utah in partnership with Native Nations and our Urban Indian communities through research, education, and community outreach activities.
It’s my pleasure to introduce to you all today Scott McAward, who will be moderating today’s discussion. Scott currently serves as the director of the Center for Disability and Access at the University of Utah and is also an adjunct with the Department of Educational Leadership and Policy. He has a licensed psychologist, and has worked with students on college campuses for over 20 years including providing mental health therapy in previous positions with the counseling centers on campuses. His most recent work has been supporting students with disabilities and strives to work collaboratively across campus on building a more inclusive accessible University of Utah.
And he is also a brand new puppy parent.
So Scott, I’ll turn it over to you.
Scott McAward: Thank you, Riley. Yes, five days into being a new puppy parent. Thank you to Riley for the introduction, and thank you to Equity, Diversity, and Inclusion for inviting this panel and putting this panel together. And I’d like to welcome all the attendees that are joining us today.
A few housekeeping items and then we can start our discussion with the panel. First of all, I won’t be monitoring necessarily the chat box, but I will be monitoring the Q&A window, and so if you have any questions that you would like to ask, you may go ahead and type those into the Q&A. The format today is we’ll start with some panelists questions and then open it up to any questions that you may wish to type. We do have two ASL interpreters available. You’ll see those on your screen with the name of Chanté Wilson or Klaryne. Those that need ASL can pin those interpreters to your screen to be able to see them, and also we have closed captioning.
I want to take a few minutes to introduce our panelists. Then we can jump right into some questions.
First is Angela Smith: Angela Smith is an associate professor in English and Gender Studies and director of Disability Studies here at the University of Utah. Her research focuses on disability representation in America cinema and popular culture. Her book Hideous Progeny: Disability, Eugenics, and Classic Horror Cinema, at Columbia University Press in 2011, considers how classic American horror film exploits an altars eugenic understandings of disabilities. Welcome, Angela!
Lou McKee: Lou is a multilingual activist and earth protector. They have participated in numerous collectives that serve several disenfranchised communities here in Salt Lake as well as other parts of the world, especially the unsheltered and autistic QTBIPOC here. Welcome, Lou!
Shandra Benito is a social worker, community organizer, and lover of the arts. She is a member of the deaf community and proudly identifies as disabled. She moved to Utah almost four years ago to become the executive director of Art Access, an organization dedicated to making the art accessible for people with disabilities and other marginalized communities. As executive director, she has focused heavily on education and advocacy in the larger cultural sector with the goal of making our entire state more accessible. In addition, she works part-time as a hospital response team advocate for the Rape Recovery Center as an organizer for Salt Lake COVID-19 mutual aid. Welcome, Shandra!
Shelby Hintze produces the Sunday morning, political talk show Sunday Edition with Doug Wright for KSL-TV. When she’s not doing that, she shares her 25-plus years of disability experience on Twitter. she hopes to shift our perspective on disability from one of either pity or inspiration to one of belonging. You can read her thoughts — and she has lots of them, some of them are actually pretty good, she sells us — on Twitter at @ShelbyHintze. Welcome, Shelby!
Stacy Stanford is the health policy analyst at Utah Health Policy Project. Her focus is on health care access through a disability rights lens, and she’s been an advocate for patients for over a decade. Stacy began her career in long-term care working primarily with residents with dementia. After a car accident caused disabling health issues, Stacey shifted gears, and she went back to school where she received a BA in disability justice from Westminster College in 2016. This was a customized degree program combining political science, sociology and justice studies. Stacy helped organize more than two dozen healthcare defense events during the ACA repeal fight of 2017, and she led much of the grassroots volunteer efforts behind the successful 2018 Proposition 3, Medicaid Expansion Ballot Initiative Campaign. Welcome, Stacy!
And finally, Su-A Lee is from the Republic of Korea and now studying in the United States for nine years. When she was a child, her parents always said it is important to challenge and achieve equality. This means the only way to grow is by challenging yourself. Although she is deaf, her parents expected her to become independent and succeed just as any hearing person would. Her goal is to be involved as an expert in the improvement of the deaf community in her country. She earned a master’s degree in the Public Administration Program at Gallaudet University. She wants to support a non-profit organization and deaf community and educate them about how to determine rational decisions related to finances. That’s why she’s pursuing a second bachelor’s degree in accounting here at the University of Utah. She believes that our remote movement can impact our own lives. Welcome, Su-A!
And I’d like to just start off and jump into our first question. The first question is, “how do you define disability, and how may it intersect with other identities?” You could either answer from your own perspective of how you identify with a disability or your lens on that question overall.
I’d like to start off asking Shelby to respond.
Shelby Hintze: Thanks, Scott. So I think for me, personally, I am disabled. I have spinal muscular atrophy, which is a neuromuscular disease, and I have used a power wheelchair my entire life. Growing up, disability in my life was never something that was negative but it also wasn’t a positive; it was just a neutral thing. I hated, like, when people joked about my disability. I didn’t participate when I would be around other disabled people there. You know, they’d make jokes about if not being able to walk, and I was just always very uncomfortable with that. I’m still not 100% there — and I think that’s just a personal choice — but and as I’ve grown and been more exposed to the disability community, I’ve really been able to see this as an opportunity to have community and have connection with people that are different and similar.
When it comes to how it integrates into other marginalities, I think, for me, I’ve been very privileged, and I can really understand my privilege of being White, straight, cisgender and upper middle class seeing how I’ve had a very interesting experience with having one foot in that very privileged world and having another foot in a very marginalized world of disability. I’ve been trying to figure out how to balance those and how do you use them both to my advantage. I think when it comes to disability I always remind people it’s the only marginalized group that anyone can join at any time and permanently or temporarily, and most people will at some point, so understanding and disability and what that means and rooting out ableism within ourselves is beneficial not just to our community as whole but to us as individuals as well.
Scott McAward: Thank you, Shelby. I’d like to direct the same question to Stacy.
Stacy Stanford: Shelby was perfect. [laughs] I think of disability a lot in the way I think of a lot of things which is kind of a policy perspective, and so I cast a really broad net when I define disability.
I personally identify as disabled. I have, kind of, a mix of chronic illness, mental illness, mobility impairments — some things I was born with, and some developed in adulthood. I’ve kind of seen, personally, some like different categories of disability, but then just in my work, I realized that if we cast a really broad net that brings people into the disability umbrella that does more good than building walls to define who is truly disabled that keeps people out. So for example, you know, I include things like trauma and substance use and surviving sexual assault, and you might identify with those things but not necessarily identify as disabled. And that’s fine, but I think when we’re crafting policy we want to think about disability really broadly to make sure that nobody gets left behind. Especially because folks that are more likely to face the lack of a diagnosis, lack of things that identify you as really “disabled,” are things that are harder to get if you’re from marginalized communities, if you’re a person of color or trans person or a queer person or a combination of all of the above, it makes it much harder to get that official disabled label, so I I defined disability with a really broad umbrella.
Scott McAward: Thank you very much. Shandra?
Shandra Benito: Yeah, I really am enjoying hearing my fellow panelists’ answers on this. I agree with everything that they’re saying. One thing, um, I also identify as a person with a disability. I’m hard of hearing and grew up in the deaf community. ASL is my first language. I also have anxiety — general anxiety — and I found that I often would just talk about being hard of hearing or deaf and wouldn’t talk about being and having anxiety.
I was at an event where I was listening to another disability right activist talk instead, it’s really important to talk about not just the disabilities that most people see for you or your, maybe, primary identity, but also to talk about the other ones, so I’ve been trying to talk more about also having, you know, a mental health disability as well. But I think the biggest thing that I wanted to add to the conversation is that often people think about disability as an individual impairment or where or something about our bodies are outside of the “normal.” I’m using pretty big quotes around that, but really that disability is a normal part of the diversity of the human body and mind. It is not necessarily my disability that disables me but it’s about the barriers and inaccessibility that exist in society — that just society is built to preference a certain type of body or a certain type of being in the world.
I think that that is something when people talk about, you know, in kind of disability studies: the social model of disability, which is what I’m talking about. That it’s really a societal issue about access and about how society is set up rather than focusing on people’s individual disabilities, which is often kind of called the medical model…and we could do a deep dive into that. But I saw a question in the chat, so I thought I would just kind of address that.
I think one thing I wanted to add too about kind of what Stacy was talking about with the access and the kind of diagnosis pieces: I think that is one struggle where we kind of have to sit in this in between where, you know, I know that we all believe in the social model and also at the same time so many of our services and resources are based in this kind of diagnosis model. So it’s really challenging; how do we make sure that people with disabilities have access to resources and have the protection that the law guarantees while also recognizing that that whole model is broken and unjust? I think that is the kind of struggle that I think about when it comes to a lot of our disability access, and a big part of that comes from some of the advocacy that was done and the activists said did that work. We’re not using an intersectional lens and that a lot of our movement has been and our most, maybe, visible activists have been White, White women, parents of children with disabilities. There’s a lot of challenges that come with that.
Scott McAward: Thank you, Shandra. Lou?
Lou McKee: I’m going to preamble my response to the question with a teachable moment here. I am a displaced African. I’m also a displaced Indigenous, and I’m also a displaced Jew. I was asked to be on this panel specifically because of my diversity, and it’s sometimes really humiliating rather than privileged voices maybe withdrawing their time to amplify a marginalized voice. I could have said those same things but from a perspective of the person that these things are happening to. I have the luxury that depending how you look at me I’m either White presenting with the ambiguous ethnicity, or I’m Latin. So that’s the teachable moment; that when we have the opportunity and there’s Black women in the room and there’s other QTBIPOC in the room to really hand the mic over and allow them to hold space and amplify their voices.
But this question reminded me of the fact that I’m Jewish.There was a movie that was made called Life is Beautiful, and in the movie — it’s actually was a real textbook that this equation came out of — and with ACA being in our purview right now, this is very apropos. And I’m going to give a content warning that it we’re talking about Nazi speaking here, and it’s horrible words that are disgustingly ableist, but this is how I feel I’m still defined and so I think it’s pertinent for the conversation:
A lunatic costs the state four marks today. A cripple four and a half marks, and epileptic three marks and a half. Considering that the average is four marks a day, and there are three hundred thousand patients. How much would the state save if these individuals were eliminated?
And often when I think about our current state of affairs, about how do you define? I, as a Brown person that some BS medical science said that, I feel less pain than White people. I’m still trying to get my Latino family to recognize that I am disabled, and a lot of things in hindsight are because I’m autistic. But we can’t get even the Brown community access to healthcare or even access to a reasonable accessible way to become an immigrant. My mother, because of the sheer grace of the fact that she had some money, she came here legally, but it took almost 23 years. So if you’re talking about a migrant, disabled family coming here, like, we’re defined as scum. I wish the world would recognize that, and when I hear the conversations of that’s not who we are…that is who we are.
But the way that I have felt empowered is I was teased for being smart and having my special interests — and I still am — but those special interests are what give me character and what make people want to hang out with me even though I’m socially awkward. Although the government defines me by dollars and cents, I think my community values me at a much higher rate.
Scott McAward: Thank you, Lou, for sharing. I’d like to actually move to our second question. Before I do though, I’d like to just remind individuals if you have any questions, please type it in Q&A. And our second question is “could you share how your lived experience with a disability led to a sense of pride or empowerment and/or limitations and barriers?” Su-A?
Su-A Lee: So, I’d like to put two words out to the audience. The first is stereotype and the second is attitude.
When I think of stereotypes and what people think when they see someone — an individual with a disability or who’s deaf — What do they see when they notice those populations? When abled individuals look at those populations, there’s a lot of assumptions. Deaf people have to deal with many barriers related to language, and often labels of them not being smart enough are put onto them because of those barriers when that is not necessarily true it could be an individual that has a great background in education and family. Our community is very diverse, but the way we’re looked at from the abled world often doesn’t align with that. So that’s the first thing that I wanted to hit on; I’m always thinking of barriers that I encounter as well as those stereotypes.
There is a lot of pride in response to that stereotype. But we need to work together as communities to break down those challenges. We need to challenge the mentality, that’s out there and really take those ingrained stereotypes and remove them. There are so many things that the deaf community can do that the hearing community or the non-deaf community can as well.
The second word, attitude, is something that often when people encounter somebody from our community there may not be much of a response. So, for example, my community has various different ways of communicating; we’re a very heterogeneous community. There are different ways that we communicate with the world.
Some people write through written language, and I often utilize that here. I’m from Korea, but when I’m here and interacting with people that are not deaf or hearing I will often try to write to them, and that will invoke a response in the person where they will visibly look awkward or not knowing how to approach that situation That gives me some clues as to the attitude about the person of that interacting with me. Maybe they’ve never met another disabled person. Maybe they don’t have any exposure to other disabled people in their family or within their community.
That’s something that I often encounter, and attitudes are so automatic in people in the responses.
When people get that exposure and that education, I notice that their attitudes change; they become more friendly and interactions are much more different and not as stilted. That’s something I experience a lot.
In my home country of Korea, the view that I would often get is that disabled people were a population to be pitied; they had limited functioning. They couldn’t physically do what others could do. When I moved here to the U.S., I learned that here there’s more of an empowering view. There’s more opportunity and empowerment, but the view from the population that doesn’t understand the disabled community is the same [as Korea]. It’s interesting to see that attitude resonate throughout the world in many different countries even though those opportunities or different underlying things may be the same, the attitudes and the encounters that I feel may be the same.
Scott McAward: Thank you, Su-A. Angela?
Angela M. Smith: Thank you, and I’m just so excited to be a part of this panel of amazing folks today. I’m gonna give a quick image description: I am a White woman with brown hair, long straight brown hair and bangs. I am wearing dark blue and I’m in front of a bright blue pattern background that has my bio information on it.
I wanted to to make a note of it being better, and stay in part, because I don’t know if everyone immediately understands the connections between our topic and veterans, but ADA information suggests that as many as a third of the nearly 12 million veterans in the U.S. between the ages of 21 and 64 identify as having a disability — report a disability — so obviously that is a community that’s very connected to the disability community, and I wanted to acknowledge that.
I have been working in the field of disability studies in my research and my teaching for nearly 25 years, it’s an integral part of my life, and so while I don’t identify as disabled, I guess I would say I can’t imagine my life without disability. It’s just central to the way I think, in the work I do and my priorities, in my lived experience and like most people I’m very proximate or close to disability even if I’m not identifying as disabled and I have moved in and out of periods of disability and illness in my life. So for me, defining disability is that kind of capacious, broad definition that was spoken of earlier; it’s something that is a part of the human experience and that we have to become a lot more conscious of, I think.
In the field of disability studies, the focus is on centering the work and knowledge of disabled people in making sure that the perspectives, the politics, the needs and desires of disabled people are at the heart of everything that we do on disability studies. I would say a second key goal is thinking about transforming things — making radical change. I guess what I’d like to add to the conversation is to think about disability in terms of the social model that Shandra was mentioning as something that is dynamic, right? It’s not just contained in a given body or mind. It’s something that’s forged in our society — it’s laws, it’s politics as policies, economics.
The experience of disability, I guess, applies not just to people who might identify as disabled or as having a disability, because the way in which our society works is ableist. It creates disabling experiences for all kinds of people not just those who might identify as disabled, so we have this kind of active disabling of folks who are Black or Brown or Indigenous, who are poor, who are queer, who are undocumented, who are gender non-conforming, who are incarcerated. Many of those folks experience ableism in our society and are disabled as a consequence, again, whether or not they might fit the category of being seen as a person with a disability.
For my own work and experience, I think a lot about the university institution as an ableist institution. It’s a deeply ableist institution. At the heart of the university is the assumption that not all bodies or minds belong or are expected to be in that space, and those who are they’re subjected to all kinds of ableist expectations. There’s a lot of expectations around how quickly you think and speak, how quickly you have accomplished things, how productive you are if you’re a scholar, how often you publish, how quickly you can move across our always-under-construction campus — issues of transportation and parking. There are all kinds of ways in which folks who don’t have a very specific standard body or mind are excluded from our space, and so for me, thinking about how to transform the university space to make it a genuinely inclusive space is a big part of what I focus on.
Scott McAward: Thank you, Angela. Stacy?
Stacy Stanford: Yes, so my current job I’m in now actually got started kind of as self-advocacy. You know I was a disabled person, who lost my job and lost my healthcare. And I needed health care and started doing, you know, health policy health advocacy work fighting for myself initially and then realizing like, “oh wow, I’m not the only one in this situation” and really kind of going from there. But it’s always a double-edged sword though, because self-advocacy is so close sometimes to exploitation where sick people and disabled people should not have to be telling sad stories in order to get health care. I was at the capital, sick as could be in a wheelchair, like literally begging for my life almost at some point with some of these legislators.
Now it’s my job to kind of help other people tell their story and to lobby their legislators, and it’s just kind of this self-perpetuating cycle of begging for basic human rights and access and health care and social services and things that we really need as a community. Sometimes advocacy and empowerment is, like, almost a transactional thing where if you advocate enough, we’ll let you have what you need to survive…so it’s just a double-edged sword.
Scott McAward: Thank you, Stacey. Lou?
Lou McKee: I never considered myself disabled because my symptoms of physical disability didn’t start until just recently, and I never had considered that all of the reasons why I had to socially assimilate were abnormal…My family was very stereotypically immigrant, and if you’re an immigrant to this country like you have to be made of steel and stronger stuff — you just have to be — and our displaced mothers are like Incredible Hulks. So as a woman, and even as an Afro-Mexican, it’s sometimes hard for me to identify with femme bodies who are not disabled, who like feel like they have no access to their privilege, and I sometimes do take for granted the education of having an immigrant mother.
It’s caused trauma, and there’s a lot of sitcom shows out there now that are really telling Brown stories from a complex perspective. I mean, finally my mom posted a meme that said, “I loved someone with autism,” and my mother’s not an emotional person. She’s not. She’s like, if you’re sick in bed and you happen to be like whistling a tune there’s this saying, “oh, well, you got energy enough to whistle. You must have some energy to do some dishes.” So there’s all of this like put upon you — ableism of that capitalism and American West values puts on us.
But for me, the one thing that has changed is I felt entitled. I had a republican father, and so I understood how the sausage was made in political power. That being American meant something still, and so I feel incredibly privileged and blessed whenever someone’s like, “oh, but I can’t,” and I’m like, “oh honey, my grandmother was the best kind of ‘Karen,’ and I’ll show you what to do.” I don’t do it ironically. It’s just that I’m grateful, somewhat in hindsight, for the difficulties of having to grow up that way, because then that type of poison that they add on to it with their ableism — not just racism and not just sexism — but when they add all the other layers you’re just like, “oh wait, you’re making fun of someone who has a disability.” [I’m grateful for] being able to have a mom that gave me that example to be able to be a comrade to my fellow disabled allies.
Scott McAward: Thank you, Lou. I’ve seen several Q&A’s come in through the chat, so I’m gonna kind of pivot a little bit to that, and give a chance for some of those to be answered by the panelists. I want to start off with the first question. “Do any of you all have a set or a list of resources, policy recommendations, best practices that we can work to implement in a workspace to create a more accessible space for students and break down ableist barriers?” Shelby?
Shelby Hintze: Thanks, Scott, and thank you for this question. This was something that I was thinking about and hoping that we would get a chance to talk about. So I will say that there are amazing resources online especially and on social media; it’s really given people a platform to be able to share their experiences, and there’s a lot of different hashtags. I really like #CripTheVote, which focuses on the intersectionality of politics and disability and kind of reclaiming the word cripple and crip. There’s many, many resources out there.
I would like to talk a little bit [on] two things that kind of have to go in tandem — work in tandem. You have addressing systems that are ableist and that are barriers societally to disable people, and then you also have attitudes. I really strongly believe that through media — through representation just in people’s personal lives — you’re not going to get people to change systems until they understand why they’re doing it. We’re going to be fighting tooth and nail to get any sort of change until the people in power start to realize, “oh, disabled rights are human rights. This isn’t a charity or a kindness.”
I had a friend say once that their dad always said, “we shouldn’t have the ADA, because we should just expect people to be kind and make accommodations for people,” but when you don’t view people’s accommodations as something necessary for them to be involved in the world and something as a gift that you are giving to them, we’re never gonna make progress in that systemic system.
So I really love and in my work as a producer, and I will admit I’m not very good at this, but something that I’m really trying is showing disabled people as experts and especially in things outside of disability. How do we show people and disabled life as just normal and well-rounded people — multifaceted people — with lots of interests. I love fashion, like, I wish I could just go on social media all day and just talk about, like, historical fashion instead of having to talk about ways that our community needs to improve. I’ll do it. I’m happy to do it: recognizing that people with disabilities are disabled people, are well-rounded, multifaceted people and moving their lives and experiences into the mainstream.
I have a wheelchair accessible van, and people always say, “oh, that’s so cool.” And I’m like, “oh, it’s just let’s just how I get around. It’s not cool.” I’m very grateful that I have that opportunity because a lot of people don’t, and I’m grateful that I have the ability to get around, but it shouldn’t be something that your kid in the Target parking lot is seeing for the first time. I have to say that if I have to teach your kid about disability, that is a problem in your family and not my problem. I’m happy to help, but I shouldn’t be the first person that they are encountering at eight years-old with a disability. I think a lot of that has to do with our media and how we frame disability, and to Shandra’s point within art and Angela within media, that’s really the best way we’re gonna get there.
Scott McAward: Thank you, Shelby. I want to kind of try to address another question that came through, and this is about “people and nursing homes or needing lifelong care being acceptable victims of COVID-19 because their care is costly in their lives are deemed without value (or their value is always declared regarding who they once were). These people have few, if any, portals for communicating outside of their institutions. Any characteristics they once used — humor, charm, intellect, etc. — are only seen by exhausted medical providers who might be worried that they will catch it from their patients. What can be done for outreach?” Shandra?
Shandra Benito: Yeah, so I’m gonna respond in a little bit of a different approach to talk about the coronavirus and how it’s intersecting with ableism. Especially being in Utah, where we just now have a mask mandate and this really huge refusal or, just, push back again, taking public health measures that will protect the population is really an ableist response. So in disability, we understand that all of us are interconnected; that we’re all dependent on each other, so this kind of American cultural ideal that we’re independent and “every person for themselves”, you know, from my perspective is really just not real.
We are not. As people, we are interdependent people. And I certainly have inter-dependents around, keeping each other’s things and helping and protecting each other. When it comes to the conversation about coronavirus, it’s been a lot of comments about older people, people who have what we say pre-existing conditions, right? We’ve seen that in the news a lot as almost like a way to make non-disabled people feel better about the virus. That “oh, well, I don’t have those things, so I’ll be okay. Therefore I’m not gonna worry about it as much; I don’t need to use protective measures.” It’s really deeply, deeply, deeply oppressive and also rooted in eugenics history which is kind of part of what Lou McKee was talking about, talking about the Nazis.
I’m going to use a trigger warning related to that. A lot of people think that eugenics — the way that the Nazis killed people — was something of that mindset was developed in Germany, and it wasn’t. Nazi representatives actually came to the U.S. to learn about eugenics policies that they brought back to Germany and used, so we really have a really scary history of eugenics in the U.S.A. that say that certain types of people are more worthy — are more valuable — that there are acceptable losses or that we would be relieved from, you know, bits of resources or time or burden if we didn’t have these people.
I think that the general acceptance of “okay, well the virus is bad, but only for disabled people, people with compromised immune systems and older people with other disabilities, right?” and that “this is okay.”
Especially since we have to wait until our hospital systems are talking about how they’re going to prioritize people’s healthcare, and how scary it is to know that we are comfortable being at that point, but we know that disabled people are going to essentially going to be let go and we’re not going to provide them with the same care with all of that could have been prevented…it’s terrifying.
I think that we need to think about how our response to the coronavirus is deeply rooted in ableism and oppression and that more needs to be done to protect people with disabilities in our response. I guess that’s not really an answer to your question about outreach, but just understanding that the problem is deeply rooted in ableism. So what I would say is that what we need to do is change our response, and so the more that we can talk with people and fight for policies and support the efforts to promote the public health measures that protect and take care of people from a disability perspective is probably the most important thing you can do.
Scott McAward: Lou?
Lou McKee: I was gonna piggyback off of what they were saying. We don’t need, and this is in some part of why organizers in the area might not always like my methodology, but you don’t have to have permission to go do outreach. You can literally call any of these facilities and find out if it is safe to do something kind for those who’ve been so isolated from their family — it may not come in a form that you’re touching this thing or you’re making this thing to give over to them.
But sometimes what frustrates me here in the Valley with organizers is that there’s this need for a central leader; there’s this need for one person to organize it and delegate it when each of us have within our capacity the ability to do something. And it doesn’t need to be a big thing. It’s not being in a nursing home, but when I was in the psych ward it was really nice to have complete strangers sending me postcards telling me that, you know, I was worth it. Oddly because I’m a pessimist, but a cheerful nihilist, somehow it got to me. So I think we don’t need the pageantry, we just need simple acts of kindness.
Scott McAward: Great. Thank you, Lou. Another question, and I apologize if I don’t get to all the questions based on time. Now the next question is: “how would you address the comment that receiving accommodations in college is a privilege and not a right?” Su-A, are you willing to answer that one?
Su-A Lee: I wouldn’t say that it’s a privilege to receive accommodations, and the disabled community has a wide range of needs. There’s a wide range — I’ll focus on the deaf community — we’re not just deaf. There’s deaf blind people. There are deaf plus individuals with multiple disabilities. There are many people and with many different needs, so some deaf people choose not to use interpreters, some do sign, some use captioning or CART, some simply need note-takers in their college education.
To label those things as a privilege as opposed to a right, I don’t think people are understanding that completely. They’re not understanding what the experience of what it would be like to be sitting in a big auditorium class where that individual wants to be able to catch a hundred percent of what’s being said around them. With those services provided, that is where the individual gains access to what’s going on, and that is a right. That individual has a right to be involved in their own class; it is not just a privilege.
Sometimes there is a view from others that those accommodations given to disabled people are looked down upon, but I disagree, and I don’t label that as a privilege.
Scott McAward: Thank you, Su-A. Angela, is there anything you’d like to add to that question?
Angela M. Smith: Yeah, it’s an ongoing issue at the university, and I think most universities. Faculty, like any kind of general group, are under-informed about disability and can feel very invested in the idea that some people are gonna cut it and some people aren’t and that some people belong in a university lecture room and some people don’t.
They’re also very set in their ways in terms of how they teach. There’s no real incentive for faculty to change over time or make adjustments, and so, they can feel — I do acknowledge that — faculty can feel ignorant and anxious when approached about accommodations. So we really need a kind of mind shift for faculty and a great deal more outreach to them about what it means to be genuinely inclusive and strategies they can adapt.
I want to point out that, in a time of COVID, it has suddenly become possible to provide all kinds of access to students that they were previously told was not available to them — students who had difficulty making it into campus sometimes, students with chronic illnesses or pain conditions who couldn’t always sit in the classroom or told that they couldn’t take a course — they couldn’t succeed in that course. [Previously], materials could not be put online for them. Lectures could not be recorded.
Disabled students are constantly facing those kinds of obstacles, and it turns out they’re not real, right? We do have the technology and the capacity and the funding if we put our mind to it — to put courses online, or put some materials online, to record classes, to put captioning on things — and this has made education a lot more accessible for some people. I really hope that we will continue that spirit of accessibility beyond a time where non-disabled people find it convenient for themselves.
Scott McAward: Thank you, Angela. Unfortunately, we are right up against our time, and I know there’s several Q&A’s that came through that we were not able to answer live. We’ll go through, and I’ll share those with the panelists, if there’s any information that they want to be shared back. I am thrilled with the discussion, the dialogue. I feel privileged to be a part of [it].
For some closing remarks, I’d like to turn the remaining couple minutes over to Mary Ann Villarreal.
Mary Ann Villarreal: Angela, did you have a note you wanted to add before we close?
Angela M. Smith: Very quickly! I just noticed in some of the questions that some folks are asking questions about staff on campus and faculty on campus. I’m very interested in connecting faculty and staff with disabilities and kind of figuring out what we need and what we can do. Please email me if you have any interest in something like that: email@example.com. Thanks.
Mary Ann Villarreal: Well, again, if you would join me in a thank you to our panelists for this incredible conversation, and I want to add and say thank you to all of you for joining us this month for Reframing the Conversation.
You’ll notice the title is How is Disability Included in Diversity? As we talk about language and how we frame even the context of how is disability included in diversity should give you all some indication that we are some early, early phases where perhaps we should be further ahead of thinking about how It is we embed the work across our division and the ways that we support an elevate and make critical to the work of EDI.
I want to say thank you to our moderator, our panel of experts which helped to move us along in this conversation — the intersections of disability and diversity across many diverse communities — and at last to thank our partners from Health Sciences and the Center for Disability and Access for co-sponsoring this installment of Reframing the Conversation.
I want to say we’re thrilled that nearly 500 people have taken time over this past year to join us in Reframing the Conversation’s panels — starting with the portrayal of Black males, continuing to anti-Asian hate, looking at queer legacies in Utah and today’s session. We look forward to having you join us in January where we will explore “good trouble,” human rights and where we go from here.
If you’d like to connect with EDI, please join us! We have several social media channels, as well as you can sign up for our newsletter People & Places and visit us at diversity.utah.edu to learn more about the work ahead and how you can be a part of making change across our communities.
Thank you, and have a wonderful afternoon.
Within an institutional setting is it better to work towards building a community within that institution or is better to work towards altering the structures of the institution that place barriers? Essentially, what would you suggest to work towards first.
Shandra Benito: Often people think about disability as an individual impairment or where or something about our bodies are outside of the “normal.” I’m using pretty big quotes around that, but really that disability is a normal part of the diversity of the human body and mind. It is not necessarily my disability that disables me but it’s about the barriers and inaccessibility that exist in society — that just society is built to preference a certain type of body or a certain type of being in the world.
I think that that is something when people talk about, you know, in kind of disability studies: the social model of disability, which is what I’m talking about. That it’s really a societal issue about access and about how society is set up rather than focusing on people’s individual disabilities, which is often kind of called the medical model…and we could do a deep dive into that.
Shelby Hintze: I would like to talk a little bit [on] two things that kind of have to go in tandem — work in tandem. You have addressing systems that are ableist and that are barriers societally to disable people, and then you also have attitudes. I really strongly believe that through media — through representation just in people’s personal lives — you’re not going to get people to change systems until they understand why they’re doing it. We’re going to be fighting tooth and nail to get any sort of change until the people in power start to realize, “oh, disabled rights are human rights. This isn’t a charity or a kindness.”
I had a friend say once that their dad always said, “we shouldn’t have the ADA, because we should just expect people to be kind and make accommodations for people,” but when you don’t view people’s accommodations as something necessary for them to be involved in the world and something as a gift that you are giving to them, we’re never gonna make progress in that systemic system.
Angela M. Smith: In my own personal experience, these are both necessary strategies. Institutional change, to me, isn’t meaningful if it’s not driven and guided by the community that will most benefit from that change. But in a space like a university, where there’s frequent turnover of students, in particular, and where people are so busy already, it can be hard to build and sustain active communities over time. So that change also has to be worked for by those who have privilege within the system. As well, these changes are interrelated: right now, disabled people, for instance, are very under-represented in university faculty. The whole process of hiring and employing disabled people, and creating accessible and supportive spaces, is crucial to making universities a space where a disability community can flourish.
Do any of y’all have a set/list of resources/policy recommendations/best practices that we can work to implement in a work space to create a more accessible space for students and break down ableist barriers?
Shelby Hintze: So I will say that there are amazing resources online especially and on social media; it’s really given people a platform to be able to share their experiences, and there’s a lot of different hashtags. I really like #CripTheVote, which focuses on the intersectionality of politics and disability and kind of reclaiming the word cripple and crip. There’s many, many resources out there.
Angela M. Smith: First, I think it’s important to say that providing access is an ongoing process, one that requires reassessment and responsiveness to different needs as they arise. With that said, there are plenty of resources online with guidelines for accessibility. Here’s just a few:
- Web Accessibility: https://accessibility.arl.org/standards-best-practices/
- Mental Health Supports for Faculty/Employees: http://www.tucollaborative.org/employment/
- Universal Design for Classroom Settings: https://dsq-sds.org/article/view/4632/3946 and https://dsq-sds.org/article/downloadSuppFile/4632/700
- Accessibility for Public Events: https://www.sinsinvalid.org/blog/access-suggestions-for-a-public-event
Scott McAward: I would also add a couple of additional resources:
- WebAim: http://webaim.org
- Disability, Opportunities, Internetworking, and Technology (DO-IT): https://www.washington.edu/doit/
I hear about people in nursing homes or needing lifelong care being acceptable victims of COVID-19 because their care is costly and their lives are deemed without value (or their value is always declared regarding who they once were). These people have few, if any, portals for communicating outside of their institutions. Any characteristics they once used – humor, charm, intellect, etc. – are only seen by exhausted medical providers who might be worried they will catch it from their patients. What can be done for outreach?
Shandra Benito: Especially being in Utah, where we just now have a mask mandate and this really huge refusal or, just, push back again, taking public health measures that will protect the population is really an ableist response…and that more needs to be done to protect people with disabilities in our response…the more that we can talk with people and fight for policies and support, the efforts to promote the public health measures that protect and take care of people from a disability perspective is probably the most important thing you can do.
Lou McKee: You don’t have to have permission to go do outreach. You can literally call any of these facilities and find out if it is safe to do something kind for those who’ve been so isolated from their family…sometimes what frustrates me here in the Valley with organizers is that there’s this need for a central leader; there’s this need for one person to organize it and delegate it when each of us have within our capacity the ability to do something. And it doesn’t need to be a big thing…I think we don’t need the pageantry, we just need simple acts of kindness.
Angela M. Smith: In addition to the response given by Shandra that pointed out the eugenic logics of this view of “acceptable victims,” and to the statement that anyone (if they have time/energy and can do so safely) can engage in outreach and volunteer work in such spaces, I would add that our current moment, in which we are exploring ideas of police or prison abolition, is also one in which we could contemplate the abolition of large-scale congregate care institutions, since it has repeatedly been shown that these places are not set up to provide genuine care and may indeed become locations of neglect or abuse. As with other abolition causes, this one requires a rethinking of state-funded in-community and in-home care.
How would you address the comment that receiving disability accommodations in college is a privilege and not a right?
Su-A Lee: I wouldn’t say that it’s a privilege to receive accommodations, and the disabled community has a wide range of needs. To label those things as a privilege as opposed to a right, I don’t think people are understanding that completely. [An] individual has a right to be involved in their own class; it is not just a privilege. Sometimes there is a view from others that those accommodations given to disabled people are looked down upon, but I disagree, and I don’t label that as a privilege.
Angela M. Smith: It’s an ongoing issue at the university, and I think most universities…There’s no real incentive for faculty to change over time or make adjustments, and so faculty can feel ignorant and anxious when approached about accommodations. So we really need a kind of mind shift for faculty and a great deal more outreach to them about what it means to be genuinely inclusive and strategies they can adapt.
I want to point out that, in a time of COVID, it has suddenly become possible to provide all kinds of access to students that they were previously told was not available to them…Disabled students are constantly facing obstacles, and it turns out they’re not real, right? We do have the technology and the capacity and the funding if we put our mind to it — to put courses online, or put some materials online, to record classes, to put captioning on things — and this has made education a lot more accessible for some people. I really hope that we will continue that spirit of accessibility beyond a time where non-disabled people find it convenient for themselves.
Scott McAward: I think it starts with increasing awareness and events such as this panel that centers disability within equity, diversity, and inclusion. While there are legal protections (ADA, Section 504) that clearly defines accommodations as a right vs. a privilege, negative attitudes continue to persist. The more dialogue about disability helps develop a culture of inclusion and that providing accommodations is a right not only legally, but morally, ethically, and as a component of social justice.
It is not a privilege. It is a protected right? Maybe not in practice. But it is a right? Students do have to self-advocate…
Angela M. Smith: Yes, access to approved accommodations through the Center for Disability and Access is absolutely a legal right in the U.S., as guaranteed by the ADA. But as you say, in practice, many of those legally obliged to provide accommodations do not want to do so. Students can and should self-advocate, where they are able. But the ADA is a law that, because there is not a self-regulating process of oversight and enforcement, places the burden of enforcement on disabled people. For instance, in terms of accessible entrances or bathrooms, disabled people often have to sue businesses to force them to honor the ADA. It can be very hard for disabled students to self-advocate to professors who are reluctant to provide accommodations: there is a vast power imbalance. We need ongoing and wider-reaching education of instructors about accommodations, we need more funding for the CDA to enable its staff to deal with the growing number of students they are supporting and to do faculty outreach, and we also need to go far beyond this model of legal compliance, supporting instructors with the appropriate information and technology so that they can create courses that are more accessible for all, from the outset.
Recognizing that many people with disabilities have gone through hard times and/or traumatic experiences, how can I share my sympathay through a common sentiment like “I’m so sorry that you went through that or that that happended to you” without making that person feel either sad or sorry?
Angela M. Smith: There’s no special script for conversations with disabled people. When people are sad and deal with difficult stuff, regardless of their disability status, they need folks to sit with them, listen, and, if they ask for advice or assistance, offer it. I think the difference lies in acknowledging and supporting someone who’s having a difficult experience, vs. acting or speaking in ways that suggest their identity or body is sad.
I am an allistic mother to a toddler who is autistic and nonspeaking. I often find myself going back and forth between being vocal about teaching others about autism and sign language and AAC devices, and not wanting to take the spotlight for groups I’m not a part of. Any thoughts on this?
Angela M. Smith: I think that going back and forth between those positions makes sense to me! A lot depends on context. Sometimes you are needed as an advocate and an informed parent of a disabled child. And sometimes your work should be towards facilitating and making space for autistic people’s communication about their own experiences and knowledge. A great resource is the Autistic Self Advocacy Network.
What are your thoughts on the use of “differently abled” or other reference to disability? Do you just prefer disability and/or your specific disability language?
Angela M. Smith: Quick answers: first, always respect someone’s own choices about how they wish to be described. Second: While it has become typical in some areas to use person-first language (person with a disability, person with autism), many disabled activists, writers, thinkers, and scholars choose identity-first language (disabled person, autistic person). The disability activist perspective also tends to reject euphemistic, patronizing, or inaccurate terms such as “special needs” or “differently abled.”
Can you please speak to ways to improve a culture of inclusivity for staff in the U workplace?
Angela M. Smith: I do feel that disabled faculty and staff need some kind of means of developing community and identifying areas of needed improvement around disability supports, creating accessible environments, and exceeding the accommodations model. If anyone is interested in helping create groups with these goals, let me know: firstname.lastname@example.org!
My daughter is a student with a disability at the U, and I see her losing opportunities in her program of study due to ableism. She does not have recourse in her program because of the way program works. There is also no platform for change in her program. The professors have told her to “tone it down” in terms of her disability. If she “tones it down” she would have more opportunities. Is there anyone surveying or auditing departments on these issues?
Scott McAward: It was always disheartening to hear of students experiencing ableism on campus. It is an unfortunate reminder that there is still much work to be done. While offices such as Center for Disability & Access plays a primary role in addressing these issues when they impact students, other offices such as the Dean of Students, Equity, Diversity, and Inclusion also can play a part. When the situation warrants a more formal complaint of discrimination, the Office of Equal Opportunity is the appropriate office. We always encourage students to talk with a CDA advisor if they experience ableism.
Our media is complicit in ableism and is still reluctant to tell disabled stories and show disabled bodies. The stories of disability we do see typically meet common standards of beauty (particularly women) while those with clear deformities are excluded and considered erroneously as “unattractive.” I have had KSL reporters literally refuse to interview me for events that I have organized and been the press contact for. I cannot even see my deformities represented in the adaptive equipment catalogs I buy from. How do we fix this?
Angela M. Smith: I was just talking to a reporter about the new HBO movie The Witches, where the clearly evil witches have upper limb/hand differences as a way of signaling their immorality and deviance. Warner Bros. and the star, Anne Hathaway, have been apologetic about that representation, but only after disability organizations like the Lucky Fin Project brought to their attention the existence of real people with upper limb differences who are harmed by these images, who deal with stigma and hate and abuse and marginalization as a result. It’s so frustrating that we’re in 2020 and major studios fail to think critically about disability representation. Of course, what is needed, are many and diverse representations in all of our cultural texts and media of characters and people with varied disabilities. There are disabled actors making a difference and amazing disability activists (the questioner included!). But it definitely feels like progress to that point of accepting and embracing human diversity is going terribly slowly.
I have been working/thinking about the way we think about “professionalism” to move away from the white, cis, male, ableist definition. Any thoughts on breaking down that?
Angela M. Smith: Yes! Requirements of professional behavior that I have seen, for instances in syllabi, involve restriction on bodies and minds that enforce very rigid norms not possible for all people: for instance, keeping still and seated and quiet for long periods of time, making eye contact, dressing in certain ways, not leaving the classroom during class time. Even in this one context, we can see how exclusionary those requirements are, and how transgressing those norms is interpreted as an unethical or unprofessional act, rather than simply evidence of how varied our body/mind modes and needs are.
What other resources can you recommend to help others volunteering with special needs people to create better understanding and empathy? Bring their skills to a higher level of understanding.
Angela M. Smith: I think one important change is to rethink the structures in which nondisabled people “help” disabled people. Being disabled, in the social model perspective, is to be disadvantaged by a system not set up to embrace, accept, include non-normative bodies, minds, behaviors, etc. If a group is seen to need “help” it is because the system has deliberately excluded and set them apart, making it impossible for them to thrive, participate, self-advocate. So, what changes need to happen to allow people to become self-determining? How do we rethink self-determination so that it is available to people who require certain supports to communicate, to make decisions, to accomplish certain tasks? And how do we restructure our society so that these supports are state-funded or given without all the power imbalances of charity and volunteer models, which mean that folks only get limited supports if others are feeling generous?
As an employee, I find ableism to be a big problem as the U. HR is the entity that “manages” issues for employees, and I find them lacking.
Angela M. Smith: I am interested in helping set up groups for disabled faculty and staff, so if you’re interested, let me know: email@example.com
- Accessible Entrances Campus Map
- Bias Incident Reporting Form
- Center for Disability & Access
- Center for Student Wellness
- EDI centers
- Learning Center
- Office of Equal Opportunity, Affirmative Action, and Title IX
- Resiliency Center
- TRIO Programs
- University Counseling Center
- Utah Neurodiversity Workforce Program
- University Neuropsychiatric Institute
- Veterans Support Center
- Women’s Resource Center
- Accessible Utah
- ASSIST Community Design Center
- Association on Higher Education and Disability (AHEAD)
- American Civil Liberties Union (ACLU) of Utah
- Disability Law Center
- Disabled Rights Action Committee
- The Legislative Coalition for People with Disabilities (LCPD)
- Neurodiverse Utah
- Utah Governor’s Committee on Employment of People with Disabilities
- Utah Statewide Independent Living Council
- Utah State Office of Rehabilitation
The resource lists are intended as a starting point for support and community in Utah and the U. For a more comprehensive list of resources, please visit the Center for Disability & Access’ website.