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,
lives 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 accessible 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 accessible 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 which 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 to 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 wheelchairs. 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 Margaret 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 comments 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 mother
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 necessarily 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 intellectual
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 university 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 because 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 join
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 recognizing 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 organized 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, Stanford,
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 leading 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)

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