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Jessica Luzanilla
Emily Shuman
Emmett Lockwood
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Welcome to Adventures in Accessibility, where we dive into the world of disability, access, and inclusion, with your host Emily Shuman.
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Today's guest is Emmett Lockwood. Emmett is a disability justice practitioner and student activist passionate about creating disabled, decolonial, and anti-oppressive communities. He's a senior at the University of Wisconsin-Madison, majoring in political science and gender and women's studies, conducting research on how definitions of political personhood intersect with electoral access for disabled voters. They have previously served as an intern for the American Association of People with Disabilities; the United States Senate Committee on Health, Education, Labor, and Pensions; and for the Department of Health Services for the state of Wisconsin. Lockwood helped organize the Disability Cultural Center Coalition at UW-Madison, which successfully established the UW-Madison Disability Cultural Center in 2023, the 13th such center in the United States.
All right, Emmett, welcome. Thank you so much for joining us.
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Thank you so much for having me.
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So glad to be talking to you. So why don't you start by just telling our listeners a little bit about yourself? Obviously this is a disability podcast, so if you can share whatever you're comfortable with about your disabilities and what a day in your life looks like.
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Yeah. So I am a disabled college student at the University of Wisconsin-Madison. I'm multiply disabled. I have multiple physical disabilities. I'm also autistic and neurodivergent and have a optic nerve disorder. I also grew up as a child of a deaf adult, so within the proximity of disability community spaces. And I am also chronically ill.
A lot of my day as a university student really... And what I love so much about being disabled in academia is I'm at the part of my college career where I get to take a lot of classes and engage in a lot of research around disabilities. So it's generally a hodgepodge between classes and research and bearing the bitter winters up here in the northern Midwest. But yeah, a typical day is a little hard to talk about because of just the ebb and flow of research and classes. Yeah.
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Sure. Yeah, I get that. So I know you've gained some notoriety. You're kind of something of an up-and-coming disability activist, and I think you have some really good wins that you've been able to accomplish at your campus there. So wondering if you could speak a little bit about what you've been able to do as a disability activist and what motivated you to get more involved in that work.
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Yeah. So the biggest one was the creation of the Disability Cultural Center here on UW-Madison's campus. Disability cultural centers are a little bit of a rarity in the US. So in terms of what they are, a lot of campuses have spaces for LGBTQ+ students and students of color that focus on essentially giving students a living room on campus is how I like to frame it, somewhere you can just be and talk with others about your identity and explore your identity and explore community in a way that you don't feel like you're constantly taking on the burden of educating about your disability or other identities to the folks around you. And that was part of what motivated the work to build the Disability Cultural Center here on campus. We're the 13th cultural center in the US. We were a month shy of being 12th, but I'm very okay giving that accolade to the University of Texas at Austin and the work being done down there.
But yeah, so I got into disability activism work and the idea of a cultural center actually back in high school. I attended a private high school on the East Coast that, because of not taking any federal money wasn't legally required in any way to comply with the Individuals with Disabilities Education Act or the Americans with Disabilities Act, so I went to a high school where there wasn't a big disability community and there was a lot of piecemeal work of disabled students educating each other on what teachers were better, what accommodations we could ask for, what it looked like to ask for accommodations on the SAT or any college entrance exam.
I came to campus in the fall of 2021, kind of in that mid-Covid stage, back when everyone was still masking and public health directives were still in place, so I didn't get any on-campus orientation. So my first week I came to our Disability Services Center here at the University of Wisconsin and I walked into the room and I sat down and I got asked if I had an appointment, which makes sense; their primary obligation on campus is to provide accommodations for students. And I'm like, "Oh, well, I kind of want to meet other disabled students." I got told like, "Oh, there's some registered student organizations on campus, but there's not really a place for that on campus." And I guess the motivation behind the Disability Cultural Center was the combo of my own personal experience of wanting to come to campus and find a community, and then working with the students around me.
I find it kind of funny that I've gained notoriety for the Disability Cultural Center because when I think about it in my brain, there was like 30 of us working on the project. I just happened to be kind of the policy whiz behind it. So it was talking to older students and talking to so many students who had thought about dropping out sometime throughout their time in college. We came across this statistic from some folks who do research on disability acceptance at college campuses that while 12% of college undergrads were identified as disabled in 2019, it took on average six years for a disabled undergrad to complete a four-year degree. And the number one cause of taking longer to complete a degree or eventually dropping out was feeling like there was a lack of community and a lack of sense of belonging. And that's huge when we think about student loans, when we think about the ability of getting disabled professionals into the workplace, all of that.
So that really motivated my work on campus, and from there it just spiraled into all sorts of directions that I could have never dreamed of. I started a political science major because of that work. It was what brought me to looking at how we support disabled folks in community living more broadly, which brought me to work for the US Senate Committee on Health, Education, Labor, and Pensions, getting to do some policy work under Bernie Sanders, and then also thinking about disability in public life. I've done some nonprofit work in terms of... down in, actually, Texas with transportation nonprofits and more accessible public transit. But yeah, I think for me it really started with just being a college student and wanting to belong on campus, and as I've gotten further on in my college degree and had experiences talking to friends and seeing the issues that come up is really what keeps me going.
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That's excellent. And have you seen some of those positive outcomes firsthand with students staying engaged in their degree programs and getting done with school sooner maybe since the inception of the Cultural Center?
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Yeah, actually. In addition to being a student on campus, I work for my campus's university housing. And I had a student who was thinking about whether college was the right fit for them. They were really motivated to stay in school, but they had realized that they felt like they were walking into classes that... They were in a medical field and talking about disabled folks, in particular neurodiverse and neurodivergent folks, as patients rather than as actual providers and actual clinicians. And then they were a student the year after the Disability Cultural Center started, so I talked to them and I'm like, "Hey, what about the Cultural Center?" And they ended up going, and they ended up not just having them have this kind of safe space on campus for between classes, but they were actually able to work with the Disability Cultural Center to convince their professor to let them do a volunteer... They had a service learning volunteer project for the class to let them volunteer to create some programming for Autism Acceptance Month at the Disability Cultural Center, and then we're able to bring that back into the classroom and bring that back into the curriculum.
So talking about disability cultural centers aren't just also a place for disabled students to belong on campus, because when we have disabled students belonging on campus, we just see so much growth and richness in terms of what's getting added back into the curriculum and what perspectives are being brought to the table.
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Wow, it sounds like it's been really impactful. I'm curious to know, what is the collegiate, or from the student side of things, what is the perspective of college students on the ADA? I know this is something that's been around probably longer than you've been alive, so I'm wondering when you learned about it, what interaction you've had with it, and what you think about it overall.
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Yeah. So I'm definitely a member of the post-ADA generation. I was born in 2003. The ADA has existed for my entire life, which I'm really grateful for. I first learned about the ADA actually in elementary school when I first got diagnosed with my optic nerve disorder. I got put in accommodated education settings and had to talk through with my parents about IEPs, and my parents were really great on informing me about the legal requirements around IEPs. I guess I didn't more formally learn about it until I got into high school and into an inaccessible setting and had the question of like, "Wait, isn't there this law that protects against this?" And then that's where I got digging into the looking at how the ADA gets enforced and how a lot of the times the enforcement is through public funding or through lawsuits. So, yeah, I was really lucky to also grow up with a really flexible high school curriculum. I got to do a lot of history projects in high school on both the history of the ADA and before the ADA, the 504 sit-ins.
So, yeah, I guess in terms of general college student perception, the ADA is an amazing piece of legislation, as someone who is a dual citizen between the US and Canada and knows there's similar laws in Canada, but not as robust as the ADA, to some extent. There's a view that college students are really grateful we have the ADA, but also that the ADA... It was written in 1990; we're now in 2024. There's a question of really has the ADA gone far enough, and this question of there is more we can do, thinking especially about... I came into public policy originally from a tech field. I think a lot about coding and thinking about how the ADA 2010 revision provided a lot of substantial updates to make websites accessible, but it's not kept up pace with looking at accessibility online in terms of social media or accessibility online in terms of what we're currently looking at with AI. When we think about accessibility online, like social media, folks are encouraged to put alt texts for visually impaired users, but it's not a guarantee in the slightest, or captions on videos. And I think just there's so many parts of our built infrastructure online that have progressed without the ADA.
And then, also, I love a nice, pretty, old building. Our college campuses in the US are old, and there's a lot of buildings that still haven't had a major update since before 1990. I can speak from personal experience. My department at the University of Wisconsin-Madison is housed in a building that was the first building built on campus, so we have no elevator, no heating, no cooling. It's a fun time. So thinking about how in many ways the lack of funding that's been given to academia to rebuild some of these older buildings, especially in institutions when you're not talking about institutions that have nearly the endowment as a Harvard or a Yale, you're looking at old buildings that aren't accessible. And yes, they're protected by the ADA because they haven't had a major renovation since 1990, but then you also get to the question of why aren't they being renovated, and is part of the reason they're not being renovated because folks know they'd have to be brought up to code if they were renovated?
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Yeah. And have you encountered any other frameworks of accessibility either through your studies or in your lived experience that you think might be more effective or be a good way to supplement what goes on with the ADA?
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I feel like universal design and universal design for education would be a great way to supplement the ADA. I really think especially looking at the college classroom, a lot of the current requirements under the ADA require college students to engage in negotiations, essentially, at the start of every semester with professors to ensure access. And there's definitely some professors and some departments at certain colleges that think more about this than others and think about the burdens, especially we know that certain populations aren't able to access medical documentation for disability as frequently as others. We know that a lot of our professors on college campuses have been raised in an academia that stigmatizes accommodations and views taking academic accommodations as a way of, quote, making a course easier, which is not true and is just an utter misconception of what accommodations do. But I think what I really like the universal design and universal design for learning framework because it takes the burden off of the student and puts it on the environment as a whole.
I think there's a lot of energy that goes into being disabled at college that people don't count. Yes, when you're in the workplace and you get a new job, you're going to have to talk to your boss about accessibility or when a new need comes up. But for college students, most college students are taking four to five classes per semester, so at that point, you're talking to four to five different instructors each semester, so for two semesters, eight to nine people total about your accommodations every year, and that doesn't even get into having to advocate for accessible housing and having to advocate for accessible transportation around campus. I think there is really a hidden cost and a hidden energy sink that goes into being a disabled college student that also is mimicked outside of college and being disabled in the broader world, but I always try to think about, how can we make it so students don't have to spend so much energy on ensuring they can access a classroom?
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Yeah, it seems like it continues to be kind of a barrier for people with disabilities, which is not... The purpose of the ADA is to remove barriers, so I get that you'd want to reduce the energetic burden for people to have to request those accommodations. And for people who don't know much about universal design, how would you define that if you had to put it into your understanding?
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Yeah. Universal design and universal design for learning is the idea that instead of putting the burden of accommodations on the individual for requesting them, instead we should look at, how do we make systems more accessible from the outset so that accommodations are moved from less of an individual fix per person and more looking at the system as a whole? A great example of it would be, in academia, looking at... Okay, if you are a professor who requires paper books for each semester, instead of semester after semester requesting students buy those books and then having students who blind, low vision, need text-to-speech for whatever reason having to request that accommodation separately, just uploading the books onto your course platform as a PDF so they can be downloaded and read in a text-to-speech format. It's things like that of essentially thinking about, how do we design from the outset for accessibility instead of viewing accessibility as fixes to be put in later?
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So for you personally, have you always taken on and resonated with the label of disability, or is that something that you have gone on more of a journey with over time?
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I've gone on a journey. I noted earlier I was raised in the early 2000s. I through K-12 was swamped in the system of the euphemisms for disability, different ability, handicapable, all the words people use to avoid saying disabled. I also grew up in a family that wasn't sure quite where we fit in with disability. While I was raised the child of a deaf adult, I was also raised in a family that was really profoundly impacted by the Vermont eugenics movement and had family members who were forcibly institutionalized. So I think there was that dual societal stigma against the term disability and family fear of like, "This is a term that has been used against people in our family before."
I really didn't start using the term disability until late middle school, early high school, when I started realizing that it was a term that I could claim for myself. I think I wasn't always a mobility user, and as a young child with non-apparent disabilities, there was kind of this view of, "Oh, if you're a disabled, you're in a wheelchair," because that's how it commonly got presented in children's books and literature in the early 2000s. And I think it took me going to until I was in 13, and other folks around me were like, "No, you're disabled," and then looking online and seeing that that was a term used by this wonderful community. And I think even then it's been a level of getting comfortable with it, recognizing that a lot of folks have a lot of different preferences on what terms they use, including person-first versus identity-first language, but also I think using the term disabled has really allowed me to embrace disability not just as an individual identity, but a cultural identity that I really deeply resonate with.
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And do you think that there's anything that you had known sooner about disability might've been useful for you during those early formative years?
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Yeah. I think for young kids, the fact that disability isn't just a wheelchair is a big one, and that disability is like a cultural identity. I think when we hear folks talking about disability, it's often in what you can't do, and little kids really don't like to be told what they can't do, speaking from personal experience. And there wasn't a whole ton of framing when I was younger of disability as a positive, or disability as something where you could bring a new perspective to the table. It was very much a framing of, "If you are disabled, this means you can't do this."
And I guess that was part of the move towards words like different ability or handicapable, but sometimes those words, I feel like, almost overcompensated and made me feel like that in order to be a good disabled person, quote-unquote, I needed to overcompensate for my disability. And I think if I had to go back and tell little me something, it would be that you can just exist. Non-disabled people are allowed to just exist without that being seen as a view on their or capabilities. I wish someone would've told little me that it's okay to just be a kid. Just exist. You don't need to put pressure on yourself.
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Yeah. Well, hopefully there's somebody listening who needs to hear that now and appreciates that bit of wisdom. So I know that in your studies you're doing quite a bit of research related to disability, and so I'd love to know more about that, particularly anything you're super excited about or really proud of that you're working on.
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Yeah. So it's easier to trace trajectory of research because really the research questions come out of each other. But I got the enormous opportunity at the end of my first year of college to do research through the Elections Research Lab here at the University of Wisconsin-Madison on how the ADA and the Helping Americans Vote Act of 2002 which, for folks who aren't familiar, deals with accessibility of polling places, and whether those laws were actually being applied in Madison because, like many places, when you go to vote in Madison, we don't have polling places that are up here all year. They often get shoved into elementary school gyms or churches or random little municipal buildings. And poll workers are amazing. They are often a very, very enthusiastic workforce that is often not given the resources they need.
So in August of 2022, we had a primary here in Wisconsin for a ton of different offices Wisconsin ballots are always long. But what I did was I went around and surveyed over 40 polling places in Madison to find whether they were essentially meeting their legal standards. It was really fun. I learned a lot about how to identify whether a voting machine was properly set up or not from afar. I can confidently say I've read the user manual on all of our ballot machines here in Madison. Yeah, it was a really great experience because it wasn't just me surveying. Often poll workers were interested in what I was doing, and when I pointed things out to them, they were like, "Oh, yeah, we'll definitely move that table the inch so it's now accessible." There was of course things they couldn't change, like if they were in a site that didn't have accessible parking, but the things they could change often did get changed.
However, there was still an average of 3.6 violations of the ADA and Helping America Vote Act at our polling site, and that's in Madison. We're a city. You got to think it is got to be really disparate impacts for folks all the way out in some of our more rural communities across the country. And part of the reason for this research project was in the spring of 2022, the state supreme court in Wisconsin had eliminated the ability for Wisconsinites to use ballot drop boxes across the state. There's still some ongoing legal discussion about that case. We were seeing this massive shift of folks who needed accessible polling locations having to go into a polling location. So that was my first research project.
And what that spark into was me thinking more about voting and enfranchisement in America and how disabled votes do have the right to vote barred sometimes. So I'm currently working on my senior thesis for my program, and it's comparing a court case from the state of Maine, Doe versus Roe of 2002, where the state of Maine ruled that individuals who are disabled and put under state guardianship in the state of Maine could be legally barred from being able to vote unless they showed they could hold a job because holding a job was seen by the court as the measure for being able to take care of yourself and act in your best interest, which I have certain views on. We got to think about how that intersects with inaccessible job sites and really, how do we value labor in the US?
But I'm looking at it in conjunction with a better known case, the Citizens United Supreme Court case of 2010, which allowed corporations the ability to not vote, but spend money producing ads and electioneering material is the formal legal term on elections, and arguing that while these two cases are seen as often in very disparate spheres of legal practice, one is seen very corporate finance election laws, and the other is seen as disability, human rights law, that there's actually a through line between these two cases that really when we get down to it, the ability to vote in the US is maybe less determined on whether someone's a human and more determined on whether someone is seen as economically productive, and that that is a measure that inadvertently impacts low-income folks, disabled folks, anyone who is really barred from the workplace.
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Wow. Those are really interesting projects you're working on. And I know you said that's your senior thesis, so that means that you're getting ready to be done with college, so I'm wondering what's in your future. It sounds like maybe politics maybe, or I see a little glimmer of maybe a lawyer in there. Wondering if you thought about any of those things.
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Yeah. I graduate in May, which is coming up soon. No, I really do want to go into academia. I was born and raised in the US, but both my parents are Canadian. My mom was born in the US, but my dad was born in Canada. And really one thing that has become really apparent to me throughout my college career is kind of what I was talking about earlier with those disparate rates of medical diagnosis and how so much of how people define disability and the culture personally is based on whether someone has a diagnosis or not and access to diagnosis and how that might be harder in both rural communities, but also, in particular, in Canadian First Nations and other Indigenous communities. So I'm hoping to go into academia, I'm hoping to go to grad school and doing research. Would love to do research on what diagnosis means as the unit of disability and how structural oppression against folks in Canadian First Nations communities has impacted definitions of disability in those communities. So, yes, kind of public policy adjacent, but definitely more on the academia side, especially because I love research.
The other thing that I love going into academia is just getting more disabled professors. All of my favorite professors throughout college have been disabled. I would be remiss not to mention part of my love for my current university has been being able to work with and in the proximity of Sami Schalk, who is an amazing disabled professor here at UW who focuses her work on the history of disability activism in the Black Panther movement and other Black activist movements in the US. So, yeah, I want more disabled professors in classrooms, and I want to be one of them.
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Yeah, that's great news. I love to hear it. We definitely need more good disability research, and especially good disability research done by disabled researchers. So I'm glad to hear that's the path that you're on.
I think we're getting close to wrapping up here. One question I really like to ask people towards the end of these interviews is, any advice that you have to share for people like you, people in college, who are maybe feeling defeated because of a personal struggle or maybe current events? Anything that you have to offer in the way of wisdom for that?
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Yeah. Current events is hard. I think I would be remiss to note that the current administration we're under is really doing a number on accessibility or planning to do a number on accessibility, and I think really thinking about strength in numbers. I remember the statistic from 2019 that 11% of college students are disabled and go, "Wow, there's a lot of us." And I think the disabled college experience can be really isolating, and remembering that there's other people out there, there's other people going through it, there's other people who are probably on your campus, in your community, we have strength in numbers and we have strength in community in so many ways. I will say I've gained so much in college from other disabled students telling me or giving me the reassurance and guidance to access certain forms of accessibility and accommodation because they've gone through the process before and they were like, "Yeah, it's fine. These are good people." So, yeah, I think just remembering that there's a lot of us out there.
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Yeah, that's good advice and good thing to remember. If folks want to follow up with you after hearing this episode, what are some of the best ways to get in touch and connect with you?
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I am on Bluesky, Emmett Lockwood. I don't ever know how to speak Bluesky handles out loud. It's a confusing world. Also, I am widely reachable via email. If you're listening to this before May, my college email will still be accessible, which is ewlockwood@wisc, spelled W-I-S-C, like the start of Wisconsin, .edu. Afterwards, my email for after college will also be in the show notes, but just letting folks know because I don't know when my school will shut down my email.
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Understood. We'll make sure that's all available to the listeners in the show notes. Is there anything else that we didn't ask that we should have or anything else that you'd like to say to listeners before we say goodbye today?
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In these times, I keep thinking of... There is a quote by Judy Heumann that I'm probably going to quote wrong, but she starts by saying that she wants to see feisty disabled people make change. I have it on a mug, and I think about it a lot of just like this is really a time and a place in the world to be feisty and take what you want and ask for what you want and demand access. I think that that is something that's been keeping me going through the last couple of weeks.
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I love that. Well, thank you so much, Emmett. It's been a pleasure talking to you.
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Thank you.
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We hope you enjoyed this week's adventure on Adventures in Accessibility. Tune in next time for more inspiration and exploration.
Adventures in Accessibility is hosted by Emily Shuman, and Jessica Luzanilla is our sound engineer. This podcast is a project of the Rocky Mountain ADA Center and is funded under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research, grant number 90-DPAD-0014. This production is intended solely for entertainment and informal guidance and should not be considered legal advice. The opinions expressed by guests are not necessarily held or endorsed by the Rocky Mountain ADA Center.