On February 13 we hosted author Dr. Margaret Price to discuss her new book, Crip Spacetime: Access, Failure, and Accountability in Academic Life. In her talk Dr. Price, who is a Professor in the English Department and Director of the Disability Studies Program at the Ohio State University, explores the intersection of disability, access, and academic life. It was facilitated by Karen Nakamura, who is Berkeley's Haas Chair of Disability Studies, and included many questions from the packed audience at UC Berkeley's Alumni House.
Transcript
Karen Nakamura:
Let's get started. I wanted to welcome everyone to the Othering & Belonging Institute's Disability Cluster Event for the spring, which is welcoming Dr. Margaret Price of Ohio State University. Yay! On occasion of the publication of her new book, Crip Spacetime.
I want to welcome you. Margaret, Dr. Price always does this wonderful thing at the beginning of all of their talks which is to invite people to make the space their own. If you need to lie down, lie down. If you need to stim, stim. We have the food and beverages back there. Make use of the space. If the lights are not great for you, feel authorized to change and hack the space however you need it in order to make yourself feel comfortable. There's some great cushions back there for lie down space. I've actually lain down on them several times during talks.
So, welcome everybody. We in the Disability Cluster want to recognize that UC Berkeley sits on the territory of the Huichin, the original landscape of the Chochenyo speaking Ohlone people, the successors of the sovereign Verona Band of Alameda County.
I also want to take the time to acknowledge the role that the Department of Anthropology has played in falsely declaring the Ohlone Band to be an extinct band and causing through its possession of both human ancestral remains and cultural remains to continue to inflict harm on the Ohlone people.
This region continues to be of great importance to the Muwekma Ohlone tribe and other familial descendants of the Verona Band. We recognize that every member of the Berkeley community has, and continues to benefit from the use and occupation of this land, since the institution's founding in 1868. Consistent with our values of community, inclusion and diversity, we have a responsibility to acknowledge and make visible the university's relationship to Native peoples.
As members of the Othering & Belonging Institute of the Disability Studies community, it's vitally important that we not only recognize the history of the land on which we stand, but also recognize that the Muwekma Ohlone people are alive and flourishing members of the Berkeley and broader Bay Area communities today.
I also want to acknowledge that we are in truly shitty times. There's really no other way to put it. I think the last couple of weeks has just been intensely stressful for all of us. We knew bad things were going to happen. I don't think we knew that it would just be freight train after freight train after freight train and that many in our community are really hurting. And it's a good time for us to think of just the importance of community, of being together.
I'm so glad that so many of you managed to come here despite the bad weather. One of my favorite students, Jay, just arrived which makes me incredibly happy. Yeah. No pressure. Just grab food, grab drink, grab a seat. And so, it makes us happy. It makes me happy that one of my dear friends for two decades, makes me feel old, is here as well.
So, Dr. Margaret Price got her BA from Amherst, her MFA from University of Michigan and then her PhD from University of Massachusetts. And her first book Mad at School: Rhetorics of Mental Disability was just really just for many of us within disability says a ground-shaking moment because someone was finally really talking about just the academic ableism around mental health, mental illness, mental disability, psychosocial disability, whatever you want to call it in academia. And just put a real face to just all of the difficulties that we had all been feeling and struggling but were just too ashamed, really just crippled by internalized ableism to even manage to say its name.
And so, that was really I think the start of people being proud to call themselves mad scholars, the start of mad studies and a whole bunch of different disciplines. During that time, Dr. Price moved from Spelman College to, I refuse to put the "the" in it, so every time I say it, it's a deliberate thing but ...
Margaret Price:
We should call it an Ohio State University.
Karen Nakamura:
An Ohio State University.
Margaret Price:
Or we just not use the article, [inaudible 00:05:24].
Karen Nakamura:
Yeah, yeah. That Ohio State.
Margaret Price:
Yeah.
Karen Nakamura:
And where they lead just an amazing Disability Studies Program that's produced this incredible scholar, after incredible scholar. And they've come out with a new book, Crip Spacetime. And so, I'm just really, really happy to have Dr. Price here in conversation with you all.
So, I wanted it to be as interactive as possible. I asked Dr. Price if she could do an introduction and bring us into this space and then we'll open up for questions from myself if you guys are too shy. But really, I want it to be as part of us in community with Dr. Price.
Margaret Price:
Thank you so much. Thank you so much for talking about the space we're in, the land that we're sharing most or all of us right now, trying to be good guests of this land with the awareness that we are also uninvited settlers on this land. A lot of the thinking in Crip Spacetime is learning from indigenous epistemologies, not in a generic monolithic way, but specifically knowledges that I learned from Anishinabek and Miami and Wyandotte scholars who are in the larger Midwestern area where I work and live right now.
I want to call out one of those people whose work and friendship to me was incredibly influential. And that's Andrea Riley-Mukavetz. Her last name is spelled R-I-L-E-Y-M-U-K-V-E-T-Z. It was really from Andrea that I learned a lot of the ideas about beforeness and afterness, oldness and newness and the entanglement of space and time in ways that don't adhere to Western physics and Greek classical philosophies. So, that was a huge part of the development of this book as well as of course the time and space that we're sharing today.
Karen, I'm also so grateful that you're acknowledging that this is just a fraught, disorienting, shitty, frightening time. As with so many terrible times, part of my own disorientation stems from feeling like this feels familiar while also feeling like this feels new. And spending a fair amount of my mental energy being like, "How unprecedented is this?" Which is something I've really been struggling a lot with.
I actually wrote out a bunch of thoughts about, "What should we do right now?" Because I was very anxious about coming out here and I assumed that one of my primary roles would probably be to give advice. I'm not sure why that was my vision. That was some Virgo freak out I was having.
And honestly, I think a lot of the really strong important things to be doing are already being shared in our networks now. I'll mention just one that has felt incredibly important to me over the last few weeks, which is to be very deliberate and very purposeful about finding my joy.
My therapist said something to me a couple of weeks ago, which I guess I now feel like it shouldn't have been a revelation but it was a tremendous revelation. I was talking about how I was in tremendous struggle, but also trying to find joy. And she said, kind of offhandedly, "Yeah, that's how it's always going to be." And I was like, "Oh, right." I will not finish the struggle and get the joy as dessert. I need to just put joy in each of my weeks.
So, last week, my joy was buying a secondhand cat wheel for one of our cats. The reason I say one of our cats is it was already obvious only one of our cats would be into it. This has turned out to be true. He loves his cat wheel. He's a little black cat named Sam. If anyone would like a video of Sam on the cat wheel, please-
Karen Nakamura:
Can you describe it?
Margaret Price:
Yes. So, it's basically like a big hamster wheel. It's about 30 inches high. And it turns just like a wheel that you would give a hamster or a mouse to run on. And Sam the cat runs on it. It's got kind of AstroTurf on the inside so he can grip it. And if anyone would like to email me right now and remind me to post a video of him running in it with a description, I would be so happy to do that. Typically, I post the scripts of my talks on my website. So, one of the things I'll post for this presentation, truly, if someone reminds me is Sam running on his wheel.
So, speaking of joy and struggle, as I finished the book Crip Spacetime, one of the conclusions I arrived at is that one of the most radical things we can do is gather. Again, not a new idea. That was not my invention. But it came to me with new force and new importance as I finally finished writing this book that had been exploring all the different ways that we inhabit a particular kind of spacetime that is not familiar to other people around us.
So, one of the fundamental premises of crip spacetime is that the person inhabiting crip spacetime is radically separated from those around them. And the radical separation is hard to perceive for everyone else. So, a person where I was giving a talk a couple of months ago offered me a great metaphor for this. It's not in the book because I just learned about it recently and I was like, "Yes, that is accurate."
They said, "It seems like crip spacetime, if you're in crip spacetime, it's like you're wearing a virtual reality helmet that changes everything you're perceiving and feeling, but no one else can tell you're wearing it." And that's the key element of crip spacetime is typically ... I mean, it's not a sort of a definitive state of being. It's not like a measurable state of being.
But one of the key elements is that while experiencing a radical sense of separation, heightened emotions, frustrations, struggle, perhaps a lot of pain, that the person right next to you is unaware of, that radical separation is very evident to the person experiencing it and not particularly perceptible to the people in their immediate space and time.
I also realized while writing the book that this is not of course a state of being that's unique to being disabled. This is essentially a state of being that one experiences when one is minoritized in many ways or otherwise separated from the smooth norm of everyday operations.
And to my editors somewhat dismay, I was not able to come up with very many suggestions or solutions to the experience of being in crip spacetime that was testified to by the many interviewees in this study. But I did come out of the experience with an intense interest in gathering what it means to gather, what is the power of gathering. And particularly in moments like this very specific historical moment, what is it that we are able to do for each other in our gatherings, including this one right now? What are the ways we can care for each other? What are the ways we can make change and not necessarily in a neat, organized, cool chanting kind of way?
Chanting is also great, but I've become increasingly interested in the powerful potential of random gatherings, unplanned gatherings, hangouts. So, that's the section of the book I'm going to read. This is just a little piece of the conclusion talking about why I think gathering is important.
So, I'm only going to be reading I think for about 10 minutes. Does that sound good? I'm going to keep an eye on my watch because I love to talk. And then I'm going to stop in 10 minutes and we're just going to go right to discussion and then Q&A. Does that sound what we should be ... Okay.
All right. So, here's just a little bit of the thoughts from the book on gathering. And if you'd like to follow along, on the open access copy on the Duke University Press website, this is the very beginning of the conclusion.
Collective accountability is one way, perhaps the only viable way to shift from an individually focused, accommodations-driven approach to access toward a more relational and sustainable approach. Twelve years of work on the Disabled Academic Study have convinced me of this.
We've given the individual accommodation approach more than a good try. Attempts to repair or improve that system may help in the short run, but moving toward access in ways that take relations, space, time, cost and, above all, justice into account will require a different approach altogether.
How, then? How is it possible to move toward collective accountability in an institutional setting that presumes the importance of competition, scarcity, and individual reward and punishment? Spoiler alert, I do not answer that question in the book. I just talk about it.
And now, I'm skipping forward a few paragraphs to the bottom of page 172. The examples I've shared here all revolve around a common theme, gathering. Gathering may occur in person, virtually, or in hybrid spaces. It may be synchronous, asynchronous, or some of both. And especially since the COVID-19 pandemic, its potential harms have become well known. The possibilities and harms of gathering, as well as the nature of gathering itself and its role in achieving a more transformative kind of access, are my focus in this chapter.
Now, one of the works that I focus on while talking about gathering is a work that I'm sure a lot of people here are familiar with, the Under Commons by Stefano Harney and Fred Moten. And it's really from Moten and Harney that I got this idea of gathering not necessarily with a defined purpose, but gathering as a hangout, as a way of gathering together and thinking about potential energy rather than kinetic energy.
And this is a mode of gathering that Harney and Moten call study. They specifically refer to study as, I almost know the quote by heart, talking, walking, sitting, eating, or just hanging out and doing nothing in particular. I am increasingly fascinated by the radical potential of doing nothing in particular together. And that's what my next project is focusing on.
A few more words about gathering. Gathering, as people inhabiting crip spacetime, as crips, as multiply minoritized people, requires creativity. And crip creativity, as Leah Lakshmi Piepzna-Samarasinha names it, tends to show up in gatherings of disabled people.
I'm looking for this great story that she tells. Oh yes. So, Piepzna-Samarasinha is talking about what gathering looked like during the early parts of the COVID-19 lockdown. And this is actually from one of their blogposts on disability visibility. They wrote, "Like the hangouts I had with the same friend all through the first pandemic year, where I would pull up in the disabled parking spot in front of the building and they would roll out in their chair and we would have a one to three-hour long shouted conversation with masks on through my rolled-down window.
We could both sit, and we could be in each other's non-virtual company. We'd pass things through the window, apples they'd gotten from the fruit guy, weed gummies, baked goods, an extra mask. I am not joking when I say these hangouts kept me alive."
Now, interestingly, since the COVID-19 pandemic, the role of harm in gathering has become much more a part of many mainstream conversations. Will a gathering be fully remote, hybrid, or fully in person? Will the option to "zoom in," a verb we all now have in our vocabulary, zooming in, will it be made available in all information about the event or will that option be added only if someone asks? Will masks be required, "encouraged" or not mentioned? What attention will be paid to the type of venue, the length of the event, the potential for resting and taking breaks?
These are questions of access, not only disability access, but what I have come to call transformative access, a kind of access that centers questions of race, gender, class, and disability, and the potential for solidarity that may arise when we think about access as part of our whole selves.
When the pandemic was widely declared to be over, we didn't return to our pre-pandemic life. We returned instead to a spacetime in which the pandemic is confusingly simultaneously ongoing and over. And the friction of that simultaneity is painful.
And these are my last few words. Every gathering excludes. Every effort to welcome creates, as Sara Ahmed has reminded us, someone who is not at home. Although collective accountability can be built into gatherings of various kinds, we also cannot ignore the fact that gathering occurs through and because of harm, not in spite of harm.
Gathering forces us to confront the dimensions of crip spacetime, space, time, cost, and accompaniment, and find a way to inhabit it together. Often this cohabitation is painful and messy. But the gathering itself is a refusal to be separated and, thus, a commitment to collective access.
Mia Mingus defines crip solidarity through the assertion, "Wherever you are is where I want to be." This assertion, as Mingus clarifies, does not mean some people giving stuff up. It does not mean some people slowing down or limiting themselves. Rather, it means treating our collective presence as the only speed and set of needs that there are for that particular spacetime.
In crip solidarity, it is meaningless to say, "Oh, I'll slow down for you," because I and you have become we. We are going at a particular pace. We are paying attention to something together. We are hoping to be somewhere together. The experience is not transactional, it is a form of collective accountability.
Gathering then is how we affirm each other, how we recognize each other. And it's how we are able to imagine each other, even when we can't be together. Thank you.
Karen Nakamura:
That wasn't your cue, Carter.
Margaret Price:
I enjoy it.
Karen Nakamura:
That was so beautiful. It just reminds me, I talk of the pre-COVID as the before times. And just the romantic notion that in the before times, we're just so [inaudible 00:24:18]. And I'm not sure how much of that is just this wishful romantic thinking, but you really strike upon that now in our current climate that we have this sort of loss of that serendipity of that, that we would just meet each other at the farmer's market and sit down and have coffee. And the importance of us perhaps making a deliberate effort to do so that we really do need to figure out mechanisms of connection.
Your metaphor of the VR goggles is just so moving as well. Yeah. Oh, well you got to watch this Apple TV show called Silo because there's a reverse model of that happening in Silo where the VR goggles will show you a glorious image while everyone else sees just death and destruction. It's amazing show.
But it reminds me of how important for me text messages have become because I'll sit in a faculty meeting and just text someone. It's like, "Are you hearing what I'm hearing? Really?" Question mark, question mark, question mark. And just how much solace that has brought me. Because previously, it was so easy to get gaslighted into thinking, "Oh my God, am I the only one who feels this way?"
But text has become this mechanism for this alternate reading of events where we can create counternarratives and create a sense of community. I mean, previously, we could only do an eye roll, only like half an eye roll because we didn't want the chair to see us eye rolling.
And so, there are now mechanisms, but we have to be perhaps more deliberate in really valuing what they're doing for us as community. So, I thought it would be a nice time for us to open to other people with thoughts and questions and insights about this notion of ... that Margaret gives this wonderful model of crip spacetime, of disability making us inhabit in some ways literally different worlds than the worlds that other people navigate.
Sometimes that is wonderful, like when our worlds intersect and we have this moment of community. Other times it can be incredibly alienating when it does seem like we are not being seen, we are not being understood, we are being isolated. So, does anyone want to open us up for thoughts?
Emma:
I guess I'm feeling the silence a bit, but I was just really moved by the idea you quoted from Mia Mingus about it doesn't make sense to say, "Oh, I'll slow down for you," when you're walking in a group of people. I think that is something that I, I don't know, struggle to kind of communicate to my able-bodied friends who want to care about me and want to be walking at my speed but aren't always paying attention.
I don't know. I wonder if you can speak on that. I think it comes from maybe a lack of presence and a lack of paying attention to what is because when we are walking in a group and I'm lagging behind, I know I feel really supported by this tiny dog.
Margaret Price:
I'm super here to speak on this. I have thoughts.
Emma:
Awesome. Thank you. Awesome. Thank you.
Margaret Price:
Oh yeah. Thank you. May I ask your name? Ellen? Emma. Thank you, Emma. The whole notion of doing something for you feels particularly charged to me possibly because of my specific upbringing as a white middle-class Midwestern genderqueer person who just inhabit a number of really privileged positions and also less privileged positions. But the sort of like this is for you and that is for you just feels very of a piece with my upbringing. And that might be why I think a lot about it because I notice it.
The thing that comes to mind when you mention the issue of things being done for me or maybe somebody helping me is a concept in the book that I named Access Priming. And this is one of the few actual practical takeaways in the book. Access Priming is a specific act, and I'll describe it in a moment, but it also is something that I like to offer to audiences when I'm speaking to groups of people who are mostly non-disabled folks coming with good intentions and coming with the question, what can I do or how can I help or tell me how to do better? This is also sometimes a very present question when I'm teaching.
So, access priming is the act of offering help in a specific way. And here are the ingredients, so to speak, for access priming. You notice a potential way that you might help or provide access. That's step one. Step two, you offer it. Step three, this is the one that is very hard, you listen and you wait and you hold space for whatever might be responded to in that time.
So, here's an example and this comes from a personal, very strong pet peeve I have. I am a person who walks and I'm a person who's usually taken for a woman although I'm genderqueer. And I am also apparently a person who is often taken for someone who needs help with whatever I'm carrying, especially if it's something like some lumber or a suitcase or something that sort of appears cumbersome.
And the experience I have frequently is that whatever I'm carrying is pulled away from me. This is physically really dangerous for me. Because of my autoimmune diseases and the state my joints are in, I can be physically hurt paradoxically, although I'm easily carrying these two by fours along. If somebody tried to pull on them, I could be injured very quickly or easily. So, that's one reason why this particular example feels important to me is this is a way I get injured.
And what I want to have happen instead is for someone to say, "Hey, do you want me to get those for you?" And when I say, "No, I'm good," I want them to be like, "Okay," and move on. It's very weird how rare that particular series of events is. I have needed help sometimes. I have very poor balance. I fall down in public fairly regularly.
For some reason, people so rarely offer help when I'm lying on the ground. I totally don't understand this. I'm obviously not doing well. And if someone said at a moment like that, "Do you want help," or, "Do you want me to help you up," I could say, "I don't want to be helped up, but I want you to stay near." And if they listen to that, it would be enormously supportive to me.
So, access priming, like a lot of specific access suggestions, works on the level of the individual, it's not really a suggestion for doing things at scale or in community. It's more a little thought experiment about how help operates, maybe especially in the US and especially among strangers.
So, my suggestion in access priming is if one has the impulse to say, for example, "Do you want me to slow down for you," listen for what the other person says and then pay attention to it. And the third step is the hardest.
Karen Nakamura:
There's this wonderful project that's happening at Gallaudet University where they're doing research on, they call it DeafSpace, on how architecture can change for deaf and out-of-hearing people. And they start off with a real sort of ethnographic approach to thinking about how do deaf people occupy space?
And I love the diagrams that come out of it because they show two deaf people walking and the amount of space that you need if you have two deaf people and assigning each other. And instead of sharp corners, you want to have smooth rounded corners. Or if a deaf person is at an elevator and waiting for it, you want a reflective surface so that they can see behind so that if somebody walks up behind them, they can notice or classrooms need be rearranged [inaudible 00:34:17] back tier.
And what makes that beautiful to me is it shows deaf people being with other deaf people. There's always a dyad, at least a dyad or more than one person. And it strikes me how rare that is because when you look at diagrams that come out of access or universal design, it's always showing one person in a wheelchair and they're like, "This is my hand motion."
And it's always very isolating and I just love the DeafSpace work which always show, no, the people are in community and this is how you think about those sightlines so that people can be connected. And that seems to be a very different use of space and belonging. And I wonder how we get more of those things in communication.
Margaret Price:
The DeafSpace Project, I think one of the things that's really made it so successful is that it was led by Hansel Bauman, the architect, and Dirksen Bauman, his brother and scholar. It's a deaf-led project in a deaf space. And I think it's a very beautiful project.
I also wonder sometimes if the effort to create accessible spaces relies a lot on notions of beauty and design and expertise, which this is one thing that occurs to me when I look at those gorgeous DeafSpace diagrams. I'm like, "Wow, that is some expensive drafting."
And one thing that I'm really interested in thinking about with the Gathering Project, which is the no doubt, incredibly slow project that follows Crip Spacetime is what does it look like when we don't have the abundance that we ordinarily think of as necessary for accessible design? What are we doing in situations that lack abundance or where there's a radical lack of capacity?
And this is one reason why I'm so interested now in unplanned gatherings, not to poop on DeafSpace, sorry. It is an incredibly beautiful project and I think I've written some works on access and architecture that really think through questions of planning and beauty and design in careful ways.
But I'm so increasingly interested in what we do when things are not beautiful, I guess would be the way I would put it. The Gathering Project which I enthusiastically welcome everyone to join. On my website margaretprice.wordpress.com ... I'll say it again. It's just all one word, margaretprice.wordpress.com, there's a tab for it.
And effectively, right now, I just want to interview people and learn about experiences they've had of gathering that felt accessible to them across all the ways they bring themselves to a space. So, thinking about transformative access across gender, race, nationality, disability, sexuality, and just ask people to tell stories about when is that working.
I have so many stories of access not working. And these are so important and it's critical to keep telling them and keep working on ways that we can collectively fight them and heal from them. But one of the other things that occurred to me as I was working on Crip Spacetime is it's interesting how difficult it is to find stories of access working.
And it's difficult to think about ways that that's occurring at various scales, like not just little scales or carefully prepared scales or well-funded scales, but also larger, messier, what Mel Chen, your brilliant colleague here at Berkeley, might call agitation. The large movements of protests, the large movement of wind on water, the somewhat accidental forms of gathering that we move through on a daily basis. Where do we see access arising in those kinds of spaces? That's what I'm preoccupied with.
Speaker 4:
Thank you for this talk. I really love it. And I also want to talk about variation in crip time because I've been disabled since early childhood, but I used to walk and I was one of those people who was always trying to get everybody else to slow down. And now, I use power chair and everyone's always trying to get me to slow down. But I like the part of crip time that's fast, a manic episode, a power wheelchair flying along the street. So, I mean, I just want to just bring in that sense of the variety of crip time.
Speaker 5:
Thanks for the talk. So, I have two questions quite directly related to the book. The first one is I think the book have this potential to destabilize the productivity-oriented capital logic prevailing a lot of communities and institutions and universities. And I'm curious about how far we can go without really destabilizing the underlying capital logic in universities, how strong this kind of collective accountability can hold.
And the other question is also related to the collective accountability and gathering. So, I was also wondering, do you think gathering necessarily led to a possible sort of permanent or semi-permanent community, or is it kind of more random and asynchronous as you just mentioned and stressed? Thank you.
Margaret Price:
Thank you so much for your labor in moving the microphone around. I really appreciate it. An answer to the thought about gathering in the different kinds of communities, I think my vision of it right now of gathering is that it's very much both and, both slash and slash everything.
More permanent-ish communities, more spontaneous and ephemeral kinds of communities, little gatherings, big gatherings. I've been so inspired by all the things that I've read over the last several years about questions of, for example, bed activism, that's from Akemi Nishida's book, of the many kinds of gatherings and crip structures that are described in Leah Lakshmi Piepzna-Samarasinha's two more recent books, The Future is Disabled and Care Work.
So, in terms of how I'm thinking about gathering, this isn't particularly elegant, but maybe for all the other researchers in the room, it's helpful to hear that my research question right now is, gathering, what do you think? What do you got? I want to know what's ... And I'm specifically interested in what feels positive, what's working for people.
And so, that really leads to I think part of Anne's point which is I'm interested in being reminded of things that I'm not always focused on when I'm bringing my own notions of spacetime to the table. When I wrote about pain and spacetime in an article called The Body-Mind Problem, one of the things that felt really important to me to point out was crip time isn't always time slowed down.
And what I specifically said was sometimes it is accelerated to a terrifying pitch. And what I meant by that was I tend to experience things speeding up as frightening because it means I'm having a psychotic break or I'm having a panic attack or I am in a physically dangerous situation and I'm going to have to fight.
So, I tend to experience that speeding up as frightening or threatening, but the joy of fast crip time is something that I kind of want brought back into the center of my vision to be like, "Yes, there is also just sailing along or there is feeling kind of good when you're hypomanic and being like, 'I'm going to go with this.'"
Karen Nakamura:
Yeah, it's interesting. My experience of crip time is often just falling out of time and just time disappearing. And perhaps it's related to just disassociating, but just not being aware of the passage of time in both ways, in both directions.
Margaret Price:
Can I ask how you experienced that? Is it distressing or is it just like, "Oh, that happened again?"
Karen Nakamura:
Yeah. It's more, "Oh, that happened again." What was it? The Time Traveler's Wife. Yeah, it's just like this sense of, "Oh, I'm now in a different period and I'm the only one who seems to have noticed that." Yeah.
Well, I had something else that I was going to say, but now it popped off the top of my head. That's distressing.
Margaret Price:
Talking about gathering?
Karen Nakamura:
Oh yes. So, I remember now. It was related to what Jing was saying about ... So, there's a reason I think right now that the Department of Education is being targeted because I think that education is in some ways it's a very capitalist endeavor, but in some ways it's a very anti-capitalist endeavor, right? The whole notion of public education, of social leveling that that means is that it always represents both of producing nice little docile workers, but also of the threat that you have these hyper-educated uppity people, minorities and women and whatnot who represent threats to the system and who must be destroyed and put down.
And it really strikes me that earlier conversation we were having about universities and how I was talking about in Japan after the student protest movements in the '60s, they redesigned universities so that there would be no more gathering spaces. That student lounges were taken away, student unions were shut down, campuses were dispersed, dorms were designed so that they had no central meeting locations.
And you can consider that one form of hostile architecture. We now see the other hostile architecture moving in. We were just going to have lunch with the student union and to get into student union, we had to tap in and we decided not to go to the student union.
But it seems we are surrounded by deliberate attempts at making the architectural environment non-amendable. I was in New York City and just realizing how much of the green space had been taken over by these private green spaces that shut down or can kick people out and trespass them and don't allow free speech.
But the university is a real threat in that anti-capitalist vein. One of the core messages of the book is why are there so few crips? And we see a lot in undergraduate, a good 10%, 20% of our students with DSP accommodations. When you get to the grad student level, they evaporate. They're like 1%. And then you get into faculty and you get just a handful even at large places like Cal. And it's that true threat that they represent, I think.
Margaret Price:
Sorry. Sometimes I give talks where I have to take the mask off to be intelligible. For the methodology nerds out there, one thing that was really interesting about working on this large interview study is that if a faculty member was described as having a particular kind of disability and also being in a particular discipline, boom, confidentiality in a lot of cases was over.
And this was something that my co-researcher, Stephanie Kerschbaum and I really grappled with. And for those who've read the book, you'll notice that there's a set of brief bios at the end of the book for the different participants. I really wrestled with whether to put those in because in some ways, they sound terribly reductive. They're like, "This person identifies by this race, this sexuality. They're at this kind of university. They describe their disability as follows."
But there were a couple of reasons why those are in there. One reason is that we used a method of sampling called maximum variation sampling. Instead of attempting to sample a representative group, you're trying to survey or interview or otherwise work with a group where folks are as different from each other as possible.
And basically, the idea is to uncover the kinds of research questions or dilemmas that would not emerge unless you are talking to people who are exceptions and outliers. But we also realize while pursuing these interviews that people were extremely identifiable because talking in some detail about one's disability while also talking about the details of how your particular department or discipline works, while also talking about what kind of school you're at, confidentiality at least in the US academic system is either over or you're down to two or three people.
There's a wonderful philosophy professor, Teresa Blankmeyer Burke, who likes to identify herself as ... I think she used to say she was the only signing deaf philosophy professor. She may not still be the only, but she would kind of make a point of being like, "I am in a fairly unique position and so were a lot of folks working in universities who are disabled."
So, the other reason the bios are there is we asked each participant to write their own and just be really, really mindful and check several times about is there anything that we just are not going to mention? Should we just omit what discipline you work in? Should we omit what kind of university or what region? We'd like you to describe your own disability just to make sure that we're not, A, describing it wrong but, B, making it too identifiable.
And that was a particular challenge of that odd kind of scarcity. In some ways, disability is obviously not scarce at all. Statistically, tons and tons and tons of people are disabled, millions, large percentages of the population, et cetera. But in another way, there is an odd scarcity of identifiable people with disabilities having recognizable experiences in their professional lives.
Shada:
Hi. My name is Shada. Thank you so much for speaking. It's super moving to hear everything what you both are saying. I kind of wanted to just follow up on if you can expand on what we've been kind of covering. Especially sometimes being the only disabled voice in the room in higher, for example, levels of education and other systems that we talked about, what would you say are some steps that we can take as individuals to ensure that disabled voices are not only heard but acknowledged and able to be inputted into decision-making?
Karen Nakamura:
Yeah. It's tough, I think. I mean, there's so many times when I have been the only X in the room. And I say something and everyone's like, "Oh, we're so glad you were here." And I'm like, "If I wasn't here, you wouldn't have thought of this? Really?"
And that is so sad/ooh, really? Anyway, that's my general feeling. It's like the burden's on you guys. You can't depend on the person who's category X to always raise these issues for you. Why can't you do it for yourselves? Can't you educate yourselves? Jeez. Anyway, that's my frustration.
Margaret Price:
I forget who it was. Oh, I think it was Valerie Black. And I was meeting with Valerie and some of her students yesterday and we agreed together that what would be most productive for us during that particular gathering would simply be to complain. So, that was our just self-arranged goal.
So, being heard, being recognized in a way, this is the preoccupation of anyone who studies rhetoric. As a rhetorician, what I study is not language specifically and not communication specifically. I study the ways that people try to make meaning and how that meaning is taken up by others. That's what rhetoric is kind of.
So, I personally have a few strategies. One of which I learned painfully over my earlier career, not only as an academic but in other professions. I used to write for a free weekly paper. I used to teach in K-12, secondary school. And one of the things that I painfully learned to do was to do almost anything I could to not appear to be speaking alone.
So, if I could bring along an ally who kind of had nothing to do with what I was saying but could just provide presence, ideally, respected or strong, powerful, privileged presence, that is often very helpful. And I also learned that they really don't need to know anything about what I'm talking about. They just need to be like, "I'm your buddy. I'll sit next to you." I have found that to be a useful strategy.
It is of course often the case as of what Karen describes. You get into a situation, you're like, "I'm the only such and such." I'm either going to "make a fuss" or I'm not. I'm going to exhibit anger or I'm not. I'm going to tell everyone to fuck off or, no, I'm just trying not to.
And I have become increasingly self-protective in those situations. I have gotten quite deliberate about thinking who is here? Who would I be affecting if I engaged in this sort of advocacy? How much would it cost me? And that's something that's become increasingly important to myself.
And something I talk a lot about with friends, students, other folks that I work with or just hang out with is the point that it's okay not to be an advocate all the time. I know I'm a big fangirl of Leah Lakshmi Piepzna-Samarasinha and have already cited them a lot of times today. But they have a new post up on Substack I think just today or yesterday about the importance of not sharing, not fighting for everything all the time, of not sort of keeping your communications always flowing, not always allowing whatever needs to be said to cost you.
And I say that with a lot of trepidation and a lot of sense that I need to think about this more because, God, if there were ever times to be fighting, and speaking of myself specifically, leveraging my privilege, this is the time. But coupled with that, maybe uncomfortably, is the fact that I've also been giving myself a lot of permission in the last few years to look around and be like, "Is this worth it?" And to really think about the times when it's worth it, when I am having to speak alone to do that speaking.
Speaker 7:
Academia seems like a pretty good way to limit your sample and define the rules of the space as a sort of microcosm of capitalism or anti-capitalism, however you want to slice it. But I wonder about the undergrads and the grad students who then disperse. Maybe they're gathering in other ways. I am just curious how you view this study as within the academic sphere or specifically the university space.
Margaret Price:
Thank you. That is such a great question. There were a number of reasons why we decided to focus on academic employees. We started with the designation "faculty" and decided fairly early on that that was a problematic designation for a number of reasons, so we went to academic employees.
So, some of the folks interviewed included graduate students who were also employees of the university and staff members. But the sample is largely faculty. My early ambition for the interview part of the study was to include graduate students. And I ultimately decided the situation was so different between graduate students who are in a hybrid space of student and typically are in a hybrid space of student and employee. The situation was so different between those folks and the folks who were just employees that I decided I would have to limit the sample.
But I knew there was already work being done on disabled graduate students specifically. And so, I was looking at and trying to support that work. So, I'm overjoyed to say that there are now about 10 specialized studies of disabled graduate students.
A number of them are cited in crip spacetime. I would also be glad to send anyone a list. They range from studies conducted by institutions with relatively cure-oriented research questions like, "How can we make it better for graduate students forever," to auto ethnographic work by graduate students talking about and observing their own situations.
So, the short answer is Stephanie and I together ultimately decided to limit the sample because we were just trying to keep it something we could do. But the longer answer is the whole of people interacting with academia should be part of a larger constellation of studies asking about the experiences of being minoritized and in some cases, specifically disabled in academe.
Interestingly, undergraduate students are studied in the thousands and thousands and thousands, but it's very hard to find studies conducted by disabled undergraduate students. So, that's another thing that I'm currently interested in is seeking out and supporting that research.
Karen Nakamura:
I want to take your question in a different direction which is thinking about disabled people outside of academia. And right now, we see DEI efforts being demolished pretty broadly.
NASA just took down not only any mention of DEI or LGBTQ pronouns or LGBT symbols in the workplace, but they also took down their page Women in Leadership at NASA, which just seems so needlessly cruel. But colleges have always led the way for that, as I said, that equity. First becoming co-educational and then also letting in African American students and then also accepting disabled students.
And it finally started to affect industry to the point where they said, "Well, DEI, this diversity is important for creating a workforce that's representative and can produce products that are representative of the entire nation." Now, they're walking that back. But I think that's just a reflection of the current national leadership. I don't know how much they really, really believe it. I want to believe they don't.
But if we view our current undergraduate, my big class that you're in was about 10% disabled students, or at least students registered with DSP. And so, we should start to see those numbers in the wider workforce. And I think the key thing is I'm trying to actively work against systems that keep them isolated.
Right now, there is this notion if you have a DSP accommodation that you don't share it or you don't share your status. And I come from the queer world where it's like, "Woohoo, we're queer. We're queer. Get used to it." And so, wanting people to come out.
I know there's a ton of disabled faculty, but then they're all in the closet. I mean, the number of faculty who are out of the closet is just a handful. At Cal, of all places. And so, if the faculty won't come out the closet, who will? So, encouraging that seems really vital.
But I think the fact that we are succeeding can be seen in the efforts to make sure that this clampdown, I think this backlash is coming at a moment where we were on the precipice of succeeding and just making it seem ... We have this portion in your book where it's like, "I want the notion of accommodations to be just as natural as thinking about why wouldn't we accept gayness?" And that book I wouldn't say age poorly but in the current climate, it's like, "Are we going to move to this point where we don't?" But I think we are. Hopefully, we're at that point.
Steve Rosenbaum:
Steve Rosenbaum. Thanks so much. This is a great conversation and a great format I was saying to Lainey Feingold. I want to give a shout to for having it this way. It's a wonderful way to present ideas.
Pick up first what, Karen, you just about DEI. I don't know if you realized but at the beginning of the ... Is it on?
Karen Nakamura:
Yeah.
Steve Rosenbaum:
The beginning of the talk, I think you switched the order. You said equity, diversity, inclusion. So, I think that's one form of resistance. And I think one way to kind of reclaim. We need to ... Timothy Snyder said, "Do not obey in advance. Do not obey in advance." And spaces like this and gatherings as you talk about, Margaret, are so important to maintain. And Berkeley liking to think itself in the vanguard is not always in the vanguard, but needs to keep that in place.
Comment, Margaret, about the idea of identifying some of the people in your book or outing some of the individuals. I think the idea of referring to people from an Ohio State University is one way not to identify. I like that. But something I want ... You talked a little bit about, I think I know what you mean by this, but in your book apparently, you talk about how individual accommodations can impede access. And you've alluded in some ways about the othering that can happen, the identification, the outing.
I come from a disability rights background trying to embrace disability justice, disability studies, but I still kind of come from a place that says there's something about those individual accommodations, particularly in the disabled student context, K-12, or the I in the IEP is so important. So, I wonder if you could say more about how it impedes access even though there are ways I think to have those accommodations without necessarily being public about them. So, maybe you could talk a little bit about them. Thanks.
Margaret Price:
Thank you. One of the central arguments of crip spacetime is that this ... And I want to say this carefully because accommodation can mean a lot of things. The system of accommodation as presently practice in American colleges and universities is leading us away from rather than toward justice. It is leading us away from what I think of as a sustainable form of access.
At the same time ... And this was a really, really hard argument for me to come to in part because accommodations are something I believe in strongly. I receive accommodations at Ohio State. I, of course, advocate for them on behalf of students I teach. Since I direct the Disability Studies Program, I also advocate for them, for kind of everybody else, it seems.
So, accommodations are a struggle that I had while I was trying to work out this idea was, "But accommodations aren't bad." Aren't they getting us part of the way there? Aren't they the necessary hack or stopgap measure that we need while we're trying to build the more just, more sustainable versions of access?
And I eventually figured out something about the system of accommodation, again, as it's presently practiced in US colleges and universities, not everywhere. I figured out a fundamental thing about it which is that it relies on prediction. This is part of the temporal aspect of crip spacetime.
In order to get my accommodations at Ohio State, I need to be able to be pretty legible about what my disability is, whatever it is that's necessitating the accommodation. And we actually have a really great office of disability services and a great ADA coordinator. So, it's not one of those situations where I have to be like, "Here are all my diagnoses and my doctor signed off on them. In fact, he's here."
But even within the really well-run and liberatory system that Ohio State has, there's some sine qua non, some things I have to do for my accommodations. I need to legibly explain what the need is. And I need to say when I'm going to need it. I'm going to need it in the classroom next week. I'm going to need it for this lecture tomorrow. I'm going to need it all semester next semester. It is always, to some degree, a future move.
Now, of course, a lot of accommodations are practiced in the university circumstances in a more immediate, fluid relational way. This happens all the time in classrooms. It happens in gatherings like the ones we're in today. We have someone kindly bringing the mic from person to person. That's an accommodation that we are working out relationally and also leaning on a person's labor. But the system of accommodation itself essentially requires the ability to say, "This is the need. Here's when it will be needed.
Now, that in and of itself is an issue. But what really concerns me about using temporality in that way, using the ability to predict in that way, is that it creates an underclass. There are the people who are able to say what they need in a legible way and to predict it predictably enough that they can survive academic settings. I am one of those people.
There are also people who cannot possibly predict well enough to make use of the accommodation system and that is the underclass. These are the students dropping out of school. These are professors literally falling down in the hallway sometimes.
Moya Bailey's incredible article, The Ethics of Pace, points out that Black women professors literally die from the stress that they're under. This is who the accommodation or any future-oriented, predictability-based system is failing. And we can't perceive that very easily because they're not there for very long.
Karen Nakamura:
If you are a chair user and you go to Japan, one of the things you notice is that Tokyo, Japan is very accessible of elevators everywhere except the train system. In order to get from the platform to the train, you have to ask a train conductor to come and they pull out this tiny little mini-ramp. It's like one foot long. And they fold it out for you and you get on the train.
And it's quite ridiculous. And a brilliant scholar whose name is Mark Bookman, B-O-O-K-M-A-N, who's a disability study specialist in Japan who died a few years ago. One of the things we don't mention is that the disability community has so much death and so much premature death, not only from stress or lack of accommodation or medical malpractice.
Part of what keeps me going is just survivor's guilt most of the time, is that I know so many grad students, brilliant grad students and brilliant faculty who deserve to be in the world, who deserve to have the privilege that we enjoy. He's sleeping. He's like, "I'm done with playing."
Margaret Price:
Keeping me going. He likes me more.
Karen Nakamura:
Yeah. He likes you more than me.
Margaret Price:
He's sitting with me.
Karen Nakamura:
Yeah. And so yeah, that guilt gives ... I'm properly Japanese, properly Japanese, and guilt gets me going. Anyway. And I asked him, "What is up with this?" And he said, "Well, it's part of it." I mean, Japanese could easily design a high-tech platform doing thing or design, like Bart said, that there is no gap.
But part of the point is the show, is the show of care and that you have to call ahead. And they're like, "Oh, yes, you're going to catch the 323 train on platform four. And you're going to go to this." It's both control. It's paternalistic. But the show of care is really that symbolic-
Margaret Price:
Also meant positively, right?
Karen Nakamura:
Yeah. No, yeah. That care is like the train station wants to show we care about our disabled patrons. But it also limits them, as you're saying, because not everyone can phone ahead or knows the schedule or ahead to call them or it restricts-
Margaret Price:
I feel too much ... Yeah.
Karen Nakamura:
Too much shame.
Margaret Price:
Yes. To do it.
Karen Nakamura:
I feel the same.
Margaret Price:
I feel like I have to get out to-
Karen Nakamura:
And that's-
Margaret Price:
I didn't know [inaudible 01:12:34].
Karen Nakamura:
That performance is ... And we see this in other areas, right? That we are much more interested in the performativity of care than we are in actually rectifying the situation. And it strikes me that that is a major issue. I'm reminded thinking about trains that we were also going to talk about mobility and movement and travel.
Margaret Price:
I actually really want to get to questions from a couple more. So, maybe we should skip that.
Karen Nakamura:
Yeah. We'll save that for ... Why don't we take two or three questions at the same time and then ...
Lucy:
Hi, Margaret. It's Lucy. I was wondering if you could talk a little bit because it was so interesting yesterday, speak about your notion of accompaniment and what accompaniment ... Is there a version of accompaniment that exists at the level of collective community of gatherings, sort of beyond individualized and access needs or care? And if there were any examples in the many interviews you conducted of that that have really stayed with you?
Speaker 10:
I come to this conversation from an autistic perspective. And when you're talking about predictability, it just made me think about how part of receiving accommodations as an autistic perspective requires a predictability, not just for what we need but how others will interact with us and how others are going to interpret or misinterpret us. And that can be so impossible to figure out. And I'd love to hear your thoughts on that.
But I also wanted to talk just a little bit about how you were mentioning Leah's Substack and the idea of resisting giving everything. And one thing I talk about with people in my community is how sometimes we have to be okay with just giving 80% so we can do more for us over the long term. And that leads me into thinking about gathering and thinking about gathering in ways that are maybe atypical for normal society.
But the idea for autistic people, how we have maybe togetherness through distance or how asynchronicity gives us the truest form of communication and understanding. I'd love to hear any thoughts you have.
Margaret Price:
Thank you both so much. I think actually these two questions really go together beautifully. Two of the ideas that I am trying to work out in crip spacetime are the idea of accompaniment and the idea of what I called a body-mind event.
So, I'll talk about body-mind event because it has to do with my preoccupation with predictability and all the things that predictability is. It's a strong marker of being in an already privileged position to feel that one needs or would want or can manifest predictability.
It is a deep need for some ways of being disabled. It is something that in some ways is never available in crip gathering because we are always having to improvise. Maybe, I mean, just creatures gathering. We are always having to improvise. We are always having to figure out how things can emerge relationally.
And the body-mind event, like everything else in the book, took me forever to figure it out. A body-mind event, I ultimately came to define it loosely as a sudden, I'm not going to get this quite right, but a sudden shock to one's mental or basically your body-mind state in a way that disrupts the spacetime you are in.
So, this could be something like hitting a crack in your wheelchair and falling forward. It could be something like experiencing a sudden panic attack or meltdown. There are many, many ways that a body-mind event could manifest. And one the things I'm really interested in about body-mind events is they're almost by definition not predictable. And they're also an incredibly important part of thinking through access to me.
Again, going back to the idea of beauty or order, not thinking of access as sort of putting things nicely in place in a western non-war-torn environment, but in thinking about what are the ways that lack of predictability is always the milieu that we're moving through and that's what we have to kind of form our gatherings with and through.
With regard to accompaniment, the reason I was thinking these two things really go together is accompaniment to me, the experience of being together not only human-human being together, but human, creature, land, environments, tools, all those beings together, I think are a critical part to recognize if we are going to think about sustainable ways of making access in relation.
And I have to give a plug to a place that I learned about just yesterday. It's in Richmond. The reason I was there is because Lucy and I are old buddies from Ohio State and it's an art center called NIAD. What does NIAD stand for again?
Lucy:
It originally was National Institute for Arts and Disabilities. But now, it's Nurturing Independence Through Artistic Development.
Margaret Price:
Okay. Thank you. It's essentially a makerspace for disabled artists. And what really struck me about NIAD in particular is that there are a lot of folks around who call themselves facilitators. And there was this kind of dance going on among artists making art, people nearby, making sure supplies were available, if particular techniques or histories needed to be studied. Those were being brought to the surface and studied. But it was a gathering that could not have taken place without that kind of spontaneity and without a certain level of unpredictability in the ways that relations were unfolding.
And like every gathering place that I learned about through crip spacetime or subsequently, it's a small space. It's not something I could imagine ever creating a policy for or creating a large grand thousand-person version of it. And that's my next question is what does it mean to manifest access at all scales all the time? And that, I don't know.
Speaker 11:
I just wanted to say I really, really resonate in love with the discussion of predictability and the underclass for accommodations because I've been in so many situations where it's just like I've had professors be like, "Hey, can you let me know as much as you can in advance?" And I'm just like, "Yeah, I actually have a mental breakdown scheduled for next week on Tuesday. I'm planning on doing a flare up. I actually just sent you an annotated version of the syllabus with the days I'm going to miss. I threw in a few spicy ones."
Anyway. But I think about that a lot. And I feel like one of the things that I'm thinking about in this entire discussion with spacetime and temporality is ... I forget who it was. I want to say Harriet McBryde Johnson who was her experiences with being told she was going to die at a very young age and then living well beyond that.
And that sort of giving her a perspective of living in the present and not in the future. I relate to that in a different way as an alternate dissociative system. I've existed in my current state for two years and I know that at any moment, my mind could decide that I'm not useful anymore so I could just fade away.
And I feel like that perspective brings me back into the discussion of the system of accommodations and just all these broader talks of how do we figure all this out? And it feels like there's a lot going on with just trying to figure out the fix, the solution so that it'll work indefinitely rather than being in the present and being like, "Okay, let's commit. Rather than committing to having a solution, committing to continually working this out."
And I feel like that gets me thinking about just a thing that I feel like I see a lot in liberal spaces as well like, "We did it. We're good now. We fixed everything," rather than committing to acknowledging that progress is a direction and not an end goal. I don't know. That's my stuff.
Karen Nakamura:
We could have an endless discussion, but we don't want to tie up. Margaret, Carter as a very young puppy is at the-
Margaret Price:
Carter is dating me.
Karen Nakamura:
Well, now, he's on my side. But we'll both be around. We have this space. I think there's still a little bit of food left, so please eat it. Please drink the refreshments that we have. And please join me in thanking Dr. Margaret Price for this wonderful gathering.
