Born of activist movements emerging from the civil rights era, disability studies is an academic field that is still growing and spreading at the grassroots level. At UT Austin, associate professors Alison Kafer and Julie Minich are using their institutional platform — along with a financial boost from the Andrew W. Mellon Foundation — to make waves in the field. Their project, the Crip Narratives Collective, hopes to demonstrate the transformational potential of mentorship in realizing a vision of the world where health is a right equally conferred to all and where disability isn’t used as a justification for exclusion or discrimination.
Modeling Mentorship
Kafer and Minich first met at a disability studies conference well before either scholar was at UT Austin. Ever since then they’ve kept tabs on one another’s work, a task made easier when both separately took jobs in UT’s College of Liberal Arts, Kafer in the Departments of English and Women’s, Gender and Sexuality Studies and Minich in Mexican American/Latino/a Studies.
In 2013, both in Austin, they started meeting regularly to share their work and mentor each other. Now — in collaboration with colleagues Lisa Olstein, Pavithra Vasudevan, Jo Hsu, and Bassam Sidiki — they are taking what was an informal mentoring relationship between colleagues and formalizing and scaling it up to include disabled faculty and students from all ranks at the university.
They are able to do this thanks to a half-million-dollar grant from the Mellon Foundation that will fund two of the Crip Narratives Collective’s main components. The first is a regular convening of people with different disabilities and from different parts of the academy to mentor each other. The aim is for participants to share about their work but also about how they navigate institutions as people with access needs that usually aren’t fully met.
“Not everyone in the collective will be at UT for the rest of their careers, so the idea is that people can take this mentoring with them,” says Minich. “We were deliberate about acknowledging the ways in which mentorship, especially cross-disability, isn’t just about senior people mentoring junior people, but in fact it’s often our students who mentor us. I have learned so much from our students about self-advocacy and how to communicate my own access needs.”
Both Minich and Kafer are clear that “access” doesn’t just mean ramps and signage. Instead, the collective is working together to understand how access means something different for each person, depending on their type of disability, with the hope that they can help each other to broaden this definition for all and regularize different types of accommodations.
Kafer, who uses a wheelchair, notes that while she has been physically disabled for as long as she has been in the academy, having long-COVID has given her new insight into how she thinks about and experiences disability.
“When I talk to folks on campus about doing this job at a different pace or with different cognition, it seems like a lot of the established mentoring frameworks are about strict scheduling and time planning, which really doesn’t work for me,” Kafer explains. “Another response I get is that if I can’t do something, others will try to do it for me. We have a model of training our time and taking things off people’s plates, which are both important, but if we can think about modeling mentoring in a way that isn’t about adhering to the strictures that are already here but is about changing the strictures and structures into something else, that would be something I would love to know how to do.”
In addition to bringing together people from across UT, the collective will also bring disability artists to campus for residencies, each coordinated by a faculty member in the collective, and to hold public events to showcase their work. “Our hope is really that each residency will be different in terms how it manifests and what comes out of it,” says Kafer.
The Power of Language
It is not lost on Minich and Kafer that using the word “crip” — short for cripple and historically a pejorative — might take some people aback, but they came to the decision carefully and deliberately after years of engaging in conversation around the term, a process and decision they discuss at length in their coedited book Crip Genealogies (Duke University Press, 2023). They say the term has a longer history than many may know and has shaped the fields of scholarship that grew around it.
“I became disabled in 1994 and went to my first gathering of disabled people in 1998, and that was the first time I heard ‘crip’,” says Kafer. “Crip wasn’t being used academically at all, just by queer disability activists describing what they do. It would have felt false to me to do this work and not use the word because of the communities I was mentored by. My whole immersion and understanding of disability came from environments that used the term.”
For better or worse, Kafer and Minich say, the word “disability” can feel tied to ideas of legality, formal accommodations, and public identification. When we hear it, we might think of ADA restrooms or extra time given for exams; we don’t always consider, say Minich and Kafer, that there might be an entirely different set of imaginings for how we structure space and time for all bodies and minds.
“‘Crip’ can actually feel more capacious, but that capaciousness can also be viewed as contentious,” Minich says. “We have disabled students who disagree about the word. The fact that it circulates and generates so many feelings is what makes it important to use. Otherwise, there is an overly institutional legibility to disability. With the word ‘crip’ there is more openness. It’s more generative.”
In practice, Kafer and Minich and their colleagues use both “disabled” and “crip” to describe their work and the broader ecosystem of ideas that orients around it. This feels important, they say, especially since they bring to campus disabled artists who may or may not identify with the more provocative term.
How Institutions Train Our Thinking
Kafer and Minich feel it’s critical to begin their mentoring project with a small group of participants for the sake of giving people a real sense of personal belonging, but they also designed their plan with a larger purpose: to make higher education more accessible to disabled people.
“We want the space of the collective to be one that is personal and genuine because this job can be isolating and difficult, but we ultimately want a more accessible world where people think differently about time and pace,” says Minich. She notes that the first step to having better institutions on a more structural level is having spaces in which to think critically about institutions and imagine having better institutions. “In order to have one, the other is necessary,” she says.
Additionally, large institutions like UT present both challenges to and opportunities for change. They can be major contributors to narrower understandings of what disabilities and accommodations are, say Minich and Kafer, and therefore might also be perfect places to begin to turn the ship.
It’s not that institutions are being deliberately exclusionary, Minich and Kafer say, but rather that universities are many people’s first encounter with many forms of disability and therefore their understanding of disability is confined to the institutions’ interpretations of what is.
While UT offers a host of resources for people with disabilities that are very much necessary and utilized — like captioning services, parking, allowances for service animals, and the Disability Cultural Center and newly-formed Disabled Faculty and Staff Association — these efforts are placed on top of a structure that already exists, an institution that was built for able-bodied people. It was not designed from the ground up to accommodate all. This framework and these processes don’t just affect the visible, physical structures of campus and bureaucracy, they can affect how we perceive disability.
For example, we tend to design buildings for more typical bodies and then add on or retrofit those spaces to “accommodate” other types of mobility. Practices like these carry messages, whether conscious or not, about how we look at different types of bodies differently and with a tendency toward separating them into different categories of value.
Even people with disabilities are molded by these notions, say Minich and Kafer. Minich, who herself has ADHD, thinks a lot about the ways that she has had to retrain her view of what accommodations are and could be.
“I was designing my syllabus first and then making accommodations, for instance. Now I create syllabi that automatically encompass the more common accommodation requests,” she says. She has learned a lot, she says, from observing how her students advocate for themselves, becoming more aware of some of the ways she fails to ask for accommodations for herself: an “ingrained academic ableism,” as she puts it.
Minich’s own experience managing her disability, which is undiagnosed, has led her, she hopes, to a pedagogy that respects and believes what her students tell her about their own learning needs. She came to an understanding of her disability after half a dozen close family members received formal diagnoses and she evaluated several aspects of her childhood and her ways of working, and not through a formal institutionalized medical evaluation. This process, she says, drove her interest in understanding common barriers to receiving diagnoses in the first place — like health care or insurance access, or incomplete family histories. Many people with disabilities may not have formal avenues by which to seek accommodations, and Minich integrated this understanding into her academic practice. “Every semester I hear from students who are relieved to learn that they need not produce documentation in order to have their learning needs accommodated in my classes.”
A Vision for Health Equity
Underlying all of the projects and suggested policies are Kafer and Minich’s scholarship and fundamental efforts to change the ways we structure our worlds. These changes require both concrete measures and more abstract ones.
In terms of tangible actions, Kafer points to the idea of funding disability accommodations for faculty at the central, university level — as opposed to at the department or college level, as they are now — in the same way that student accommodations are funded. While no institution she knows of has yet succeeded in making this change, many are rallying for it. Not only would this system better incentivize departments and colleges to hire people with disabilities, she says, it also might change our mainstream ideas about who an academic might be.
Minich points to how institutions do or don’t consider disability accommodations when they plan events, and she and Kafer modeled their vision for this change by building access costs into their grant. Event planning at a large bureaucracy can be challenging, requiring planners to navigate a maze of institutional processes and procedures. Doing so with true access in mind creates even more twists and turns for event coordinators, and few if any institutions have designated staff to ensure access gets built into the process.
In terms of more abstract changes, Kafer and Minich point to the different ways we need to be able to think outside our current frameworks. Kafer notes how our culture and institutionalized ways of working lead us to mark people as moving too slow or too fast, and that both characterizations punish people in different ways. “Slowness is about physical mobility, or access barriers, but also people who move, think, and talk too fast can be labeled with a kind of psychiatric framing,” she says. “We have normative time frames in all sorts of ways that end up pushing people out.” We might think of standard office lingo around deadlines, like “EOD” or scheduling back-to-back in-person meetings that don’t give people adequate time to commute around a building or a campus, for example.
For Minich, who is also an ethnic studies scholar, some of the ways we need to adjust our thinking have to do with how we understand health in society more broadly: who deserves it, and who is responsible for people having it as a right. Thinking about this requires some understanding that social categorizations like race, gender, and disability are interconnected and can create interdependent systems of discrimination or disadvantage. Much of her research, for instance, looks at the ways in which the Latino population in the U.S. is subjected to medical neglect and malpractice and is disproportionately at risk for becoming disabled in the workplace. “Yes, contesting all modes of discrimination at once can feel overwhelming,” says Minich, “but we don’t want disability to be siloed.” If we consider health not as a measure of human value, but rather as a human right, she says, perhaps we can find a path to making health more widely accessible.
And reaching this goal begins with talking to one another, reiterates Kafer. “It’s amazing to have this group of disabled people in conversation. This is why we wanted our project to last for a few years, so we can cultivate relationships and really build collective strategies.”