Student Activism for Disability Justice and Holistic Access | Marion Quirici | TEDxDuke

Translator: Marion Quirici Reviewer: Mirjana Čutura Tell me if this sounds familiar: you’re on East Campus, and a lost-looking visitor comes up to you, asking where the Literature department is. You point it out to them, and they look confused. "That can't be right," they say. "That building says 'Science'!" We don't have the most straightforward campus. Right? So, the Literature and Cultural Anthropology programs are housed in a building that says "Science." The Writing Program, where I work, l

ives in a building called "Art," right? And then there's the added confusion of duplicate names. If you have to go to an event in Rubenstein, you better check which Rubenstein because there are three. So, navigating this campus can be challenging for anyone. But for the members of our community who have disabilities, it involves a wider variety of obstacles. My talk today begins with a small act by one student. Megan Barron, as a freshman in 2010, noticed a lack of signage around campus for acce

ssible routes and entrances to buildings. She noticed that the accessible entrances were often located around the side or to the back of a building, right, and that if you didn't already know where they were, they could be really hard to find. So, to advocate for solutions to these problems, Megan founded a student organization called Duke Disability Alliance. Sadly, Megan passed away from complications of her illness in 2015. But the community that she built here is her legacy. One of the first

things that Megan and the DDA did was to call attention to the physical inaccessibility of campus. So, these are some images from their "Accessibility Matters" photo campaign. This first one shows a student holding up a picture of the Languages Building. You see a long set of steps leading up to a heavy wooden door. The text reads, "What do all the students in Languages have in common? None of them use a wheelchair. Accessibility Matters." This one shows Megan holding up a picture of the access

ible route to the Social Sciences building. "Back door entrance says second class student. Accessibility Matters." These students' voices matter too. And the Duke Student Government heard them. In 2012, the student government passed a resolution to make West Campus fully accessible by 2022. Megan's words here, "Back door entrance says second class student," insist that we recognize disability access as a civil rights issue. Built environments send messages about inclusion and exclusion, about wh

ich bodies and minds belong, and which don't. This is a picture of Silent Sam, a confederate monument that stood prominently on the grounds of UNC Chapel Hill until student activists toppled it in 2018. So, you might be thinking that stairs and segregated disability entrances don't send the same overt messages about power as a statue of a Confederate soldier holding a gun, but there is overlap in how to respond to these injustices. Let's go back to the question of who belongs on campus. I want t

o reflect for a minute on the big impact of what Megan started here. The Americans with Disabilities Act was passed in 1990, which means that we've now had students born after the passage of that law enrolling in colleges and universities for more than 10 years. And the number of disabled students going to college continues to grow. I think the most recent data put the figure at about 11% of undergraduates in 2011. That's from the National Center for Education Statistics. And that only reflects

documented disabilities, right? So, in the country as a whole, it might surprise you to learn that one in four US adults has a disability. This is according to a report put out last year by the CDC. So, this is the world's largest minority. And of course, there's more than one way to be disabled. This is the international symbol for access. I'm sure you've all seen it. Because it's a picture of a stick-figure person in a wheelchair, most people tend to associate disability with people who use wh

eelchairs. But that's actually a pretty narrow understanding of disability. Among young people going to college, the most common types of disability are cognitive, right? There's also sensory impairments impacting vision and hearing. There are mental health challenges like trauma, depression, and anxiety. There are intellectual and developmental disabilities. Then there are things like chronic pain, fatigue, and environmental illness: disabilities that are invisible or inconsistent. So, for some

people, disability is an identity. But for others, it is situational and unpredictable. So, what would it mean to make the college experience accessible to all these different kinds of disability? Once we recognize the many forms of complex embodiment, we realize that accessibility is about so much more than ramps, elevators, and automatic door openers. Last year, DDA created an Accessibility Survey centered on the concept of holistic access. Disability studies scholars like Akemi Nishida and M

argaret Price use the concept of holistic access to think about accessibility as broadly as possible. So, our survey asked students, faculty members, and members of the community to share their experiences not only with physical access, but also with getting their learning needs met, getting their healthcare needs met, including mental healthcare. We asked about dining, recreation, residential life. Are students finding access to welcoming social environments? We also left a lot of room for comm

ents on the affordability of different aspects of university life. Because affordability is an access issue too, right? If we're thinking about people with disabilities, many of them don't have access to the same economic opportunity, and so in that case, affordability becomes a bigger access barrier than anything else. Holistic access involves economic accessibility, language accessibility, access to gender-neutral bathrooms, a commitment to chemical-free and scent-free environments - and this

is really important for people with environmental illness, but most institutions aren't aware of that. And then finally, childcare is a really critical piece. So, just from this initial list, you already get the sense that holistic access transects all categories of difference and need. It's not just about disability. It's about the many ways that our bodies and minds interface with our surroundings. You probably heard the story in the news last month about Malaysia Goodson. She was a young moth

er traveling with an infant in a stroller, and she actually died after falling down the subway steps. Inaccessibility kills. And, we don't know who we're hurting when we don't think about these things in advance on principle. So, for the educators in the room, you might be wondering, What does holistic access look like in the classroom? So, you may be familiar with some of the more basic strategies, like providing captions for your videos, making sure that your documents are accessible to screen

readers. In my own classes, I like to keep a rolling script of the notes on the projector during class discussions. This enables both visual and auditory modes of processing, and it's also great for those moments when our attention wanders, you know. Beyond basic strategies, access pedagogy is about principles. So, collective learning based on diverse styles, not social norms. This might mean the students who are the quickest to raise their hands or who have the loudest voice shouldn't necessar

ily be the ones dominating the discussion. We should find alternative methods of action and engagement. Emphasis on process, rather than product. Right, so, as a teacher, we should always be thinking, What skills am I trying to build? Right, is this about taking creative risks? And if so, we should value that above the perfection of the paper that the student turns in. Offering virtual or remote interaction opportunities. So this one's actually easier to implement than you think. Most classrooms

are already equipped with basic video conferencing software, and it's just a matter of incorporating this into our habitual practice. Offering breaks and flexibility. And finally, finding opportunities for sustained community-academia relationships. Access is a two-way street, right? We want our students to be able to take the skills that they learn in our class and put them into practice in the world at large, but we also want the world and the local community to have access to the intellectua

l life of the university. I could actually talk about pedagogy all day. Right, but just in the interest of time, I will direct you to the Duke Accessible Syllabus Project. It's a website full of really detailed guidelines, and the best thing about it is that it was created from the student perspective. Danielle Dvir, who is a Duke alumnus and a former member of DDA, is the one who started the project. So, when we're thinking about access holistically, we begin to recognize the many ways that uni

versity life is currently not accessible to many different kinds of people. At a minimum, universities are structured on competition. They demand a high level of productivity. And they're really expensive. So, what does our commitment to inclusivity mean in that context? If we want to include students with disabilities as something more than mere tokens of diversity, we should expect to meaningfully change the structures and the culture that they find when they get here. It's not enough to just

fix one person's access challenges with an accommodation. We have to get back to the basics of what a university is, whom it welcomes, and to whom it is accountable. So, what I'm saying here is that higher education doesn't just need to make room for students with disability. It needs a culture shift. And students are the best ones to take the lead on that culture shift, like Duke Disability Alliance. The Accessibility Survey that I mentioned earlier focused on needs, not rights. And that's beca

use disability rights actually aren't as good as disability justice, right? To get access to disability rights, you have to prove that disability is a thing that you have. Right, and this maintains a rigid binary between "disabled" and "nondisabled," which confers suspicion on people whose disabilities are invisible or inconsistent, right? Which, for the record, most disabilities are. So, if you can get documentation, that initiates a bureaucratic process, right, whereby you get an accommodation

that helps you to compete in the academic system. But like I said before, What if it's the academic system itself that's disabling us? This is why disability rights aren't as good as disability justice. Disabled activist Mia Mingus defines disability justice as "moving away from an equality-based model of sameness and 'we are just like you' to a model of disability that embraces difference, confronts privilege, and challenges what is considered 'normal' on every front. We don't want to simply j

oin the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them." So, student activists at Duke have already been doing a lot to push for disability justice in recent years. They know that physical accessibility is a bare minimum. That's just enough to get you in the door. So, in 2014, Jay Ruckelshaus organized a national retreat called "Beyond Disability, Beyond Compliance." It attracted activists from across the country. Getting "Beyond Compliance" means re

cognizing the shortcomings of the rights model offered by the ADA and finding ways to do better. Cuquis Robledo, who was president of the club three years ago when I first arrived at Duke, pushed for disability justice by changing the name of "Disability Awareness Week" to "Disability Pride Week," which we observe every March, generating conversations mostly on the culture of inaccessibility. Jay Pande, as president of the group last year, took initiative celebrating disability as culture. He or

ganized an ambitious "Disability and the Arts" showcase in the Nasher Museum, featuring disabled artists Antoine Hunter, Carrie Sandahl, and Barbara Barnes. This year, the Alliance is focused mostly on community building. We've partnered with the Duke Student Government, with the activist group People's State of the University, and a bunch of other student organizations, and they're building task forces to focus on specific projects to make change. So, we've got students building accessible maps

of the interiors of buildings, we have another group that is pushing for American Sign Language courses and getting those recognized for language credit. The biggest goal is to create a Community Space for students with disabilities by spring of 2020. So, this would be a cultural center for students with disabilities, mental health challenges, and their allies, and it would work to abolish the overemphasis on independence and "effortless perfection" that exists at Duke, and encourage instead a

culture of interdependence and humanity. This is exactly the kind of culture shift that we need to radically revamp higher education for a more democratic future. And it's catching on. At AHEAD, the Association of Higher Education and Disability, there's a national organization called DREAM: Disability Rights, Education, Activism, and Mentoring. So, it's a network of college organizations by and for students with disabilities. DDA was proud to become one of their first affiliates in 2017. Around

that time, there were only 10 such student groups around the country. This year, only two years later, that number has expanded to 34. And being part of this national network keeps us informed on the successes that other students are having elsewhere. It demonstrates to us the ways that DDA is breaking ground, right, and establishing a protocol for "this is what student activism for disability justice looks like." But in other ways, we have some catching up to do. Our comrades at Chicago, Stanf

ord, University of Arizona, Syracuse, and UNC Asheville already have cultural centers for disability. And these are places that provide an intellectual home for discussions on holistic access and complex embodiment. And they're changing the way that their universities see the concept of inclusion. I'll close with one last picture of Megan standing beside a nondisabled ally. Each holds a picture of a different door. The nondisabled student holds a picture of front entrance with a set of steps lea

ding up to it. "This is the entrance I use." Megan holds a picture of a back door with a ramp. "This is the entrance I use. Accessibility Matters." Following these students' lead, we can begin to make the changes that diversity demands. We have to be willing to dismantle the inherently ableist structures of higher education and replace them with something that works for everyone. Because separate is inherently unequal. Thank you. (Applause)