This year marks the twentieth anniversary of the publication by the MLA of Disability Studies: Enabling the Humanities. To mark the occasion, two of the book’s editors sat down to reflect on the book’s genesis, its impact on the humanities, and what is currently inspiring them about the field of disability studies. This text was composed in a collaborative and interdependent process characterized by the skills and embodied differences of the two editors, who have worked together in this way ever since they cochaired the MLA’s first Committee on Disability Issues and coedited, along with Sharon L. Snyder, Disability Studies: Enabling the Humanities. To create this reflection, they recorded a conversation in an online meeting, making primary and generative use of Garland-Thomson’s skills at thinking and composing by speaking. Because Brueggemann uses auto-captions to facilitate her hearing in such situations, a preliminary transcript was made from the recording’s captions. MLA editorial staff members then worked from that recording and original transcript to create a more accurate transcript, which Brueggemann then edited and shaped, making use of her fast keyboarding skills.
The Genesis of the Book
The impetus for the book came from the first MLA Committee on Disability Issues (CDI) meeting in 1995. Phyllis Franklin, the executive director of MLA at the time, was concerned because longtime MLA members were telling her they were not going to attend the MLA Annual Convention because—though they didn’t have the language for this then—the conference was inaccessible. These included members who may have used a cane or a walker and members who couldn’t see or hear very well anymore. So Franklin called some of us together to directly address the question, How can we make it possible for these people to come to the convention?
At the time, none of us really had any idea about bringing disability studies into the MLA in general; it was just a practical matter of making the convention work for these people. Functional access was the concern.
But as a result of the CDI’s earliest meetings—which brought together the first CDI committee members, Franklin, the MLA Bibliography staff members, and really the whole MLA staff at that time—we began to recognize that the problem of functional access was the tip of something else, the intellectual potential. And it was from this expansion of a functional problem to an intellectual one that this book was launched—truly the first of its kind in the humanities.
But there were many other important things that happened alongside the development of the book: a complete overhaul of the convention with respect to accessibility; a reconsideration of the accessibility of key MLA materials (most of which were print-only at that time); revising and adding key disability terms in the MLA Bibliography; an accessibility audit for the MLA, including its physical location and environment and its cultural attitudes and understandings; the guaranteed placement of at least three sessions about disability in language and literary studies at each MLA convention. This book was one element in this initiative at MLA, out of which the entire field of disability studies began to be nourished and to grow.
Language and Metaphor, Then and Now
The book’s introduction makes several claims about “disability as the ubiquitous unspoken topic in contemporary culture.” But now, twenty years later, we might nuance those claims, because we didn’t understand then what we understand now: that the human variations that we think of as disabilities, and the way people live with them, are at the center of culture and life every day, all day long. What makes disability seem like an “unspoken topic” is that we still lack effective ways to talk about, and even to think about, disability—because disability itself is a relatively new word with implications as a political identity, as a human rights initiative, and as a part of civil rights legislation in the United States. Many of us who openly identify with our disabilities have had the experience of finding others who share the same kind of disabilities but who might say, well, I’m not disabled. There are myriad reasons—all of them important—that a person might choose to distance themselves from, or to not disclose, a disability, including the person’s right to claim their own identity. But such claims often ground themselves in what is still somewhat unspoken—and thus unknown: the discourse of disability and of disability rights, disability culture, disability knowledge, and disability studies.
Yet the work of the MLA and of disability studies—not to mention the culture that has developed around disability—has changed the discourse and knowledge about disability a great deal since the book was published. In part, these changes happened because disability studies is now widely taught in higher education; academic presses and journals have brought forward prolific publications in disability studies; and college students who learn about disability, disability studies, disability culture, and disability justice bring their knowledge and new language with them into the world. We finally have a vocabulary for openly talking about disability, so students in our classrooms have less fear about using the wrong words or saying the wrong thing. Instead, they are eager to learn the vocabulary surrounding disability—its possibilities and potential and its harm, histories, and happenings.
In the introduction we also noted, with great disappointment, the many disability metaphors in English, and it’s quite discouraging that such metaphors are still common. In the media, for example, the expressions “fall on deaf ears,” “cast a blind eye,” and being “paralyzed” (i.e., unable to act) are still quite prevalent. These expressions are not thoughtful, but they are widely used. They are a part of what we might call narrative normalcy, the tendency to tell stories in certain ways because of the great number of stories that have already used that same narration, thus making them seem “normal.”
Yet an interesting thing about metaphor is that the referent of a metaphor can fall away. When people say something is “lame,” they’re not thinking about disabled people: the referent for “lame” has been lost, disconnected from what the metaphor means, the work that it does. Another example is the phrase “blind peer review,” in which “blind” simply means “anonymous”: like “lame,” the referent for “blind” has fallen away.
What literary studies, cultural studies, and language studies can do is help us go beyond accusations of “political correctness” or “language policing” and to really think about the work that language does toward making meaning, not to mention the kind of cultural work that representation does.
Disability Studies in the Humanities Today
There is so much work happening in the field that it’s difficult to keep up with everything, and that’s exciting! Twenty years ago, a conference session on disability studies might be attended mostly by the panelists’ relatives. Now we’re seeing a much broader interest in disability studies, along with an inflection of disability perspectives and methods, in many humanities fields. It’s inspirational to experience the diaspora of disability studies work across disciplines and through generations of our students. Disability studies in higher education began in sociology and in medical anthropology and then moved—largely through the Society for Disability Studies and the MLA—quite fully into the humanities, into literary studies and rhetoric and more slowly into philosophy, religious studies, bioethics, political science, and other areas of identity studies.
Cross-disciplinary and cross-identity work is exciting too. Twenty years ago we were trying to shine the light quite specifically on disability. And now so much of the work is about multiple layers of identities and how those layers are in conflict or blend together. Sometimes one identity becomes the visible marker and other identities might fade into the background, yet all the identity layers are shaping one another.
Then there is all the developing theory and practices around the concept of access happening in the field right now. We’re framing access in ways that go far beyond, say, accommodations. Access is ongoing and always already negotiated, and in so many ways: relational, contextual, mutual, shared, perpetually contextualized attention to how a space, situation, or interaction works for the various bodies and minds who are negotiating access. From this framework of relational access we also have developed new vocabulary and theories such as access intimacy, access labor, access challenge, access fatigue, access barriers, access paths, and access gain. And so even as disability studies in the humanities continues to gain ground and expand, new conceptual frameworks and critical terms are being generated.