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Intervening in the Accessible: Reassembling the Social in Disability Studies

Twenty-Seventh Annual Meeting of the Society of Disability Studies,
Session 7 (Friday, June 13, 1:00 – 2:30 PM)

Kevin Gotkin, Reassembling the Accessible
Clare Mullaney, “Here We Go Alone”: Sifting through the Disparate Self
Jody Cohen, “What I Didn’t Know”: Dislodging “Normalcy”
Anne Dalke, In the Crevices: Refusing to Crystallize

I. The audience enters to see this looping on the screen:
Our chairs are @ the front of the room, scattered, yet separate, not behind a table, with a ball of yarn and needles or a hook on each.
We enter, separately; each of us sits, picks up our yarn, begins to knit or crochet…
[Screen goes blank after “Loose Threads” stops playing..]

II. Introduction (spoken, by each of us sequentially):
Our group consists of two graduate students and two professors, all drawn to Disability Studies, none feeling fully at home in it.  But we see this nagging issue of fit as a clue rather than a detraction from the field.  We posit here the notion that 'disabled enough' thinking obscures what is in fact the true creative wellspring of thinking about disability: the gradations, the shades, the registers...all the things that mark both differences and similarities...this is what opens up disability into a capacious intellectual brainspace.   If disability is not just disability, or if disability is less a noun (an ascribed set of traits) than a verb, something through which we move (again and again) both in and out, like a needles and thread, then how might this point us toward an alternative vision of “access”? On the one hand, we celebrate the field’s primordial investment in what we call “access-oriented epistemology,” the way knowledge blossoms when we tear down barriers and fiercely commit ourselves to inclusion. On the other hand, we believe that Disability Studies nuances our understanding of identity politics, challenging what we mean when we talk about self and social world as if they are stable entities. In “The End of Identity Politics,” Lennard Davis argues that the “problem presented to us … is the emphasis on exclusivity,” and advocates “expanding the protected class to the entire population.” “The “partial, incomplete” subjects Davis describes find realization in “dependency and interdependence.” We are struck by how Disability Studies is building a strong notion of access, which it is now also effectively deconstructing.

JODY: We here both figure that deconstruction, and offer a loving re-assemblage, working its way beyond the fault lines of the stable self, given access to a stable social order. We highlight what Leo Bersani calls the “massive redefining of relationality” attendant in queerness, an always-tentative web of signification that is irreducible to neatly ordered identities, what Georgina Kleege describes “in the world of blindness (as) a whole range of…visual experience.”  If disability, like Annemarie Jagose’s description of queerness, “refuses to crystallize,” how might we design for access, not knowing what we don’t know about ourselves and our needs? How might we continue to call for access, while acknowledging the unpredictability of uptake, the possibility of being taken unaware (as Alison Kafer testified, when she talked in Delaware last fall about “Unsafe Disclosures: Tragedy, Trauma, and Other Taboos”)? Can we reimagine accessibility not as replacement or retrofit, but as “ambient ubiquitous interface”?

These ruminations about the impossibility of full access emerge from a group that is more of a “menagerie” than a panel, a collection of miscellaneous creatures lumbering toward an uncertainly reassembled form of sociality. Our project has emerged across a series of gatherings in Philadelphia, wildly working through our understandings of “disability,” “access,” and “accommodation.” What we offer you today is a collaborative representation and continuation of these conversations, drawn from our own experiences as well as from various theorists, such as Judith Butler, who acknowledges that "precarity is differentially distributed" --some of us have much more precarious lives than others. Yet, Butler also claims, our shared precarity can become "a site of alliance.”

CLARE: We situate this alliance in four connected and disconnected positions. In the videos and spoken presentations, we tell stories of our own various disablings. We meander from the field of disability studies, to the self who is defined by the field, to the possibility of an “other” who exists outside it, and then to the spaces—the crevices—within and between them all. We figure here a continual shift in perspective, one grounded in our conviction that the self is never fully situated, or thoroughly placed, or entirely anchored. We understand disability as contingent, a web in which we are all implicated, with all selves strangers. We are so often resting beside or pushing up against disability, never fully at its center; and although some people may never fully get "outside" of disability, they too are mobile, relationally and contextually, within the borders of the category. We are within and outside, close and distant. We situate ourselves in the gaps, reading the fissures between the “local” and “total” as places of resistance and sites of reform.  We look not to redefine or even query disability, but to re-imagine its structure. 

ANNE: As you have already apprehended, a central trope that has emerged for our project is that of “loose threads,” knit together, yet always capable of being untangled and re-knit.  Yarn is multi-sensory, both visible and palpable. It can be used to create, to protect, to tie things in knots.  Sitting here knitting (and crocheting!), we figure ourselves—and the larger world—as looped together, an eco-home, protected nurtured, yet still vulnerable—temporary, unstable. Knitting is like story-telling, making shapes out of what is shapeless. To knit is to re-model the accessible and inaccessible, the present and absent. Yarn can create groupings; it can also unravel them.

KEVIN: Yes, our project unravels the legibility of disability, calls subjectivity a wily foundation on which to build a concept of  “access.” However, our unravelings do not take access or accommodation lightly. We are not cavalier about the ways in which access can make a difference in an ableist world. But we don’t believe that Disability Studies stops where the category of disability does. We think the field is re-making what we know about both identity and sociality, reshaping what we think we know about time, memory, perfection, utopia, love, care, sex, vitality, humanity. We want to see Disability Studies cited in all the domains it is poised to reinvigorate. In our presentation, we enact some of this reach--both critically examining what gets called “disability,” and demonstrating how far out it might stretch.

CLARE: Quoting Judith Butler again, from Precarious Life:
we are not separate identities…but already involved in a reciprocal exchange…that dislocates us from our subject-positions. To ask for recognition…is to solicit a becoming…to stake one's…own persistence in one's own being…. At the most intimate levels, we are social…outside ourselves, constituted by cultural norms that precede and exceed us. The 'I' cannot come into being without a 'you'…[and yet] I am not fully known to myself, because part of what I am is the enigmatic traces of others…I am nowhere without you…my own language must break up and yield if I am to know you. You are what I gain through this disorientation and loss. This is how the human comes into being…as that which we have yet to know.

JODY: We here challenge presumptions about knowability, both of who we are and what we need. We say that there are no guarantees in this unpredictable process: we name as problematic our assumptions about clarity of uptake, about reliable outcomes of calls for accessibility. Disability is not its own self-identical thing; there are strong differences among those who are assigned the identity. But who can refuse it? Let us keep the question of who we are, as Butler says, “permanently open”: “if there is no possibility of ‘capturing’ that other, then questioning becomes a mode of relationship”—always “stepping back, asking, reorienting our conversation."

III. Clare, Unpairing the Pair (on video: ):

I begin with a pair of gloves acquired only months ago.  It had been a particularly cold winter, and I was rummaging through my family’s disparate collection of winter accessories.  Searching for particularly warm gloves for my excursion into New York City, I stumbled across an old pair of my great aunt’s, which were given to her by my mom only a few Christmases before she passed away.  They’re quite stiff, and it’s obvious they have hardly been worn.  My aunt had been given them right when her outings began to dwindle, when driving and traveling had become all the more difficult with age.

When I first held the gloves in my hands I felt close to my aunt.  I imagined her ten fingers snuggly encased within their fleece lining and was comforted that mine, too, would be similarly enclosed.  I stared for moments at a particular mark on the left glove.  Mary (or “Auntie M” as she affectionately liked to be called after Dorothy’s aunt in the Wizard of Oz) was a heavy smoker.  I remember sitting on the front porch of my grandmother’s home in Scranton, PA.  I was about five years old and suggested to M that I would stop sucking my pacifier (as per a desperate plea from my dentist) if she promised not to smoke.  It was then, at a young age (although too old, I’m certain, to be resolutely attached to my pacifier) that I was already placing myself within an economy of exchange, one in which our own vices—our own mechanisms for coping with an uncertain world—would be swapped for the other.  The mark on the glove seems to be the result of an accidental stumbling of her cigarette in which its sultry tip had briskly touched the garment’s exterior, gently melting some of the little puckered holes decorating its surface into a soft imprint.  The blot emerged, in my minutes of recollection, as a story of an un-narrated moment—one that wasn’t disclosed until the aftermath of Mary’s death.  The glove enacted a crumpling of time; it allowed—if only momentarily—past and future to touch.    

I lost the glove one evening as my family was forced to evacuate a burning restaurant—which was, thankfully okay.  I wasn’t so much worried about the glove itself being displaced as I was about Mary.  It was the double loss (the loss of my aunt and now her object) that distressed me the most.  And yet, there seems to be something about fabric that is much more about distance than closeness, about loss rather than gain.

This un-pairing of the glove seems right, though, in the end.  When my “Auntie M” passed, we were literally unpaired, our treasured dyad ruptured.  

My sister has always staunchly insisted that she won’t wear dead people’s clothes.  But in my work on textiles I’ve come to the conclusion that all clothes are the product of ghosted or dead bodies, which is precisely why I find them so compelling.  As Karl Marx would have it, the commodity always obfuscates the origin (or very touch) of its producers—the cheaply hired manufacturers in China that stitch together modern-day apparel for exportation across the globe.  So our clothes, then, are never our own.   As much as cloth is about belonging—about obtaining the proper fit—it engenders absence rather than presence, injury rather than reparation.

Our hands, both of them, were always the same.  Our thumbs in particular were continually raw with the skin torn, presumably a nervous habit passed on through a strong gene of chronic anxiety.  It’s “fitting,” I think, that the gloves work to cover over these unsightly scabs – the remnants of another poor habit similar to my longed-for pacifier and her packs of Tareytons.

And I end, then, with one glove rather than two – a glove that now has very little “use value” without its other mate.  My hope was that Mary’s glove might be found when the snow finally defrosts beneath the warmth of an arriving spring.  But maybe it’s better that the lost glove remains lost—detached and unfound.  Both in scholarship and life, I’ve been invested in probing the gap between fabric and flesh, cloth and body, and I wonder—again and again—what possibilities exist in this empty space.  I’m sure M would have loved the story about her glove being left behind during my family’s evacuation from a restaurant with nothing more than a clogged hood in their kitchen.  I can hear her giggle.  That makes me smile.  

IV. Kevin, Reassembling the Accessible (spoken)
In 2005, Bruno Latour, long known for his foundational work in science studies, wrote a retrospective introduction to Actor-Network Theory, the loosely defined and fairly misunderstood body of research that had been attached to his name for decades. In Reassembling the Social, Latour rescripts what the word “social” means to sociologists who had for too long been using the term to signify a stable set of affairs. The social, in Latour’s estimation, has come to mean something too static, too material, too cordoned-off from other domains of interaction for it to be useful in answering questions about the actual social world. “[I]t’s no longer possible,” he writes, “to inspect the precise ingredients that are entering into the composition of the social domain.” That’s at the beginning of the book. By the end, he’s far harsher: “To insist that behind all the various issues there exists the overarching presence of the same system, the same empire, the same totality, has always struck me as an extreme case of masochism, a perverted way to look for sure defeat while enjoying the bittersweet feeling of superior political correctness.” For Latour, the social is momentary, a fleeting collection of agencies that can be only glimpsed according to a Heisenberg-like principle that figures various elements as rapidly changing assemblages.

Latour reassembles the social first by introducing key uncertainties we must learn to accept. These include the need to view objects as agentic, the need to understand group formation as more important than the group itself, and the need to foreground the risk of failure in writing up our accounts. Then Latour suggest a number of moves we can make, like situating global structures in particular local settings. In the end, Latour finds that politics itself must be recoded if the “social explanations” that usually garner the most political clout rely on treating people as mere puppets controlled by invisible threads that no one cares to actually examine.

I find that what Latour does with the word “social” is what we in disability studies must do with the word “accessible.” And at first I thought I could model this in parallel, but distinct epistemological realms. Insisting on assemblages, for example, works for Latour like it might work for us (and indeed has worked for other spheres, if we think of Jasbir Puar’s reconfiguration of the classic ‘intersection’ in feminist thought as an assemblage). But as I started to run Latour’s project simply parallel to some moves we could make in disability studies, I found that they might not even be two separate paths. That is, Latour’s social and our accessible are not just two seemingly unmixed goods that need closer attention; they are indeed more intimately linked.

In the first instance, Latour is speaking to the sociologists who wrote the foundation of our field. We have to recall the time before disability studies got literary, before the distrust of any synoptic or purportedly representative notion of what disability actually is, before disability became an analytic that put the “human” in the “humanities”: we cannot forget that the social model was indeed a social scientific model. Take, for example, the disability studies bibliography published in 1995 in Radical Teacher that many cite as a crucial moment in conceiving of the field’s coherence. While the list is full of humanistic, historical, and cultural studies approaches to disability, a good chunk of the texts put “social” or “sociological” in their titles. These texts dovetailed nicely with activist efforts to pass the Americans with Disabilities Act in exposing disability not as an individuated, shame-inducing experience but as a socially maintained structure built around able-bodiedness.

That “social” was a crucial word in defining what we mean by “accessible,” then, is one case where Latour might speak directly to disability studies. By holding stable what we mean by “social,” disability studies has conceived of “access” as a goal. Just as Latour argues that sociologists made the “social” too sealed-tight for its own good, we might similarly critique the ADA for making accessibility too tensely committed to sanctioned forms of accommodation. If accessibility, like sociality, is caught only in snatches when an assemblage briefly crystallizes for us to observe, then accommodations that can be agreed-upon before a particular meeting of bodies or minds is destined to fail on its path to success. Access cannot be a part of the social model if the social model already attempts to anticipate a situation that is fundamentally subversive to the usual ways of grasping social settings as whole or complete. To reassemble to first line of Latour’s text for our own purposes, then: “When [disability studies scholars] add the adjective ‘[accessible]’ to some phenomenon, they designate a stabilized set of affairs.” Even when we acknowledge that access is only ever partial or aspirational, we treat accommodations with a certain negative cost analysis. In this presentation, we want to model how the instability of the self suggests a model of access that is precarious but no less thorough in its tortuous raveling.

Access, then, is not an analytic set off from other features of a setting. Access is the setting itself, the way bodies and minds relate to each other. We might also take up Latour’s insistence that failure is an important and not unwanted experience of doing social research. He shows us how critique – the modus operandi of humanistic and critical social scientific work – has tried too earnestly to match the success of the natural sciences’ “matters of fact.” Critique, Latour says, runs out of steam when its ultimate goal is to find a totalizing structure that encases its actors or puts them under some ethereal spell that we can’t actually locate. Moving to what he calls “matters of concern” is essential to re-imbue critique with positive metaphors. “Matters of concern” direct us to a set of interactions without imploring us to speak in the name of some brutal “fact.” Concern has a particular affinity with disability studies’ expert treatment of the critical ethics of care. And I would suggest in that regard, Actor-Network Theory can learn much from disability studies.

I am surely not the first to suggest that disability studies might think of access as a string of failures. Our group has been struck in particular by Margaret Price’s writing that shows the mutual exclusivity of mental difference and academic excellence, a confrontation handed to us by an intransigent mentalism in the history and philosophy of rationality and consciousness. As we bandied various access configurations for today’s presentation, we were often left at a loss because the “excess-ability” we wanted to try out in giving everyone in the room as many accommodations as possible quickly became overwhelming to even ourselves doing the presenting. Such is the tradeoff between competing needs for accommodations that we must learn to resolve through failure and not in spite of it.

I want to end, then, by stressing that I am not framing this as an intervention into the debates, because – as Latour would tell us – reaching to these stark configurations as though radical intellectual breaks will save us is precisely the problem. Instead I want to briefly add a keyword that we might through as an added fiber in our bundle of incipient knots. In Negative Dialectics, Theodor Adorno offers the term “nonidentity” as the slippage between the concept of a thing and the material of that thing. He writes, “What we may call the thing itself is not positively and immediately at hand.” Nonidentity, he says, accounts for that nagging, haunting feeling that something is being left out of the way we know things. “Negative dialectics” is the method he gives us for attuning ourselves to what he calls the “remainder” between a thing and its concept. Thus, nonidentity is a formulation of what we worry about missing in a viable notion of “access”: it is the necessary chasm between reality and language we use to grapple with that reality. But nonidentity, Adorno says, is what is “heterogeneous” to all concepts. And in this way, nonidentity is a thread through various gaps, something that holds together a necessary disunity.

For disability studies, a field that is so deeply invested in identity (indeed, our panel is designated under the dedicated conference thread on “communities and identities”), we might relish in a concept that allows for us to think of necessary gaps in knowledge production as what binds us together. If we begin with nonidentity, in other words, we might glimpse an assemblage, a newly assembled version of access that threads us together.

V. Anne, Knitting (on video:\ )
Knitting is my primary craft these days. I first learned to do this while I was an exchange student in Germany (1968-‘69, the year of the student protests, and—just sayin’--more than twenty years before Clare and Kevin were born). So I learned European-style, which I find much quicker, smoother, and (frankly?) subtler than the American mode. American knitters hold their yarn in their right hand and sort of "throw" it over the needle to form the stitch. Europeans hold the yarn in their left hand, using their left index finger to guide the needle in picking up the yarn. If you are having trouble following this, just know that the European—that is, my--style of knitting involves a lot less movement (and they say it’s preferred by people who have repetitive stress problems).

I started knitting seriously when I was an undergraduate @ the College of William and Mary, where I was—frankly?--bored a lot of the time. Knitting helped to keep me settled while in class, and I think I also liked the not-so-subtle indication that I wasn’t too invested in what was going on, that I could attend to something else while listening to the lectures.  I made a lot of blankets during those years—one of these was a wedding gift for my cousin. I have another one in my office now. It lies on the back of the chair where students sit when they come to talk with me. I like the “link” it makes between the past, when I was a bored-yet-attentive student, and the present; I think it helps make the place of learning I offer a cozy, welcoming one (the seams of blanket are also unraveling a bit, which also seems not irrelevant…)

Elsa Nettels, who was my undergraduate thesis advisor, confessed to me that she always watched me while she was lecturing. If I set aside my needle to write down something she said, she felt a sense of satisfaction: she had made an important point, and it had registered. She compared me to Madame Defarge who, in Dickens’ novel The Tale of Two Cities, knitted a record of people who were to be killed in the French Revolution. Madame Defarge looked harmless, but was unremittingly vengeful—a dark “turn” to the role of The Fates in Greek mythology, those three sisters who spin, measure, and cut the web of life.

I do some of my knitting during long family gatherings, but most of it, these days, in departmental and faculty meetings. I have been known to get excited and wave my needles around, so my colleagues joke about not sitting too close to me, for fear of getting stabbed. My mood in these gatherings is usually (as in my undergraduate days) one of boredom, but I often also feel antagonistic, so my colleagues are right to be wary, and keep their distance. They perceive my needles as capable of “injury”-- while for me they function as a means of “reparation”: they settle me, restore me to a sense of a larger world, beyond the often maddening conversations that go on among members of the English Department, or among the Bryn Mawr faculty as a whole. Knitting keeps me sane.

As a craft of sanity-keeping, knitting actually works less like Madame Defarge’s record-keeping, and more like the (un)weaving of Penelope, that other great yarn-mistress in the Western literary canon. Penelope puts off her many suitors, during the absence of her husband Odysseus, by saying she’ll choose one of them to marry when she finishes weaving a burial shroud—but every night she unravels what she has woven during the day. Rather than “writing” the fate of others by knitting a pattern, like Madame Defarge, Penelope ducks the fate ascribed to her, by unraveling what she has woven. (Last year a colleague observed that I seemed to have been working on the same project for a long, long time—and actually accused me of unraveling it, Penelope-like, between meetings.)

Like Penelope, I use knitting as a way to be present by being absent, and to be absent while being present. I can certainly pay close attention to a presentation or conversation while knitting (I always chose beautiful yarns, which self-pattern, and simple stitches, so I don’t have to think about them very much). But mostly the act of knitting functions to keep me in place, in places where I’d otherwise find it hard to stay put.

Of course, while absenting myself from the present, I am creating some object that will be worn in the future, generally by me or one of my family members. My “products" resemble the stories I read and the tales I teach. So much of my work is about the ways in which we craft stories as stays against chaos, as ways of ordering the un-orderable (this spring, for instance, I was engaged in a pretty profound independent study of the theory and literature of trauma; it was all about representing the unrepresent-able). Knitting is like story-telling in that way, making shapes out of what is shapeless, making clothing for those chilly ones I love, knitting together what would, without my needles and nimble fingers, stay separate…

VI. Jody, The “Other” (spoken)
In her essay “Reviewing Eve,” Nancy Miller describes an installation Sedgwick created in the CUNY Grad Center English Dept. lounge:  She used cloth figures she had made—stuffed forms dressed in blue leggings and tunics and draped with woven cloth—and hung from the ceiling…  and distributed a screed she called ‘in the bardo’ --  about “the between-state that immediately follows death.  In Tibetan bar means in-between, do means suspended, thrown.  Miller writes:

“…the figures’ strongest representational ties are to the disorienting and radically denuding bodily sense generated by medical imaging and illness itself, on the one hand; and on the other, to material urges to dress, ornament, to mend, to re-cover and heal.’  … the wordless figures invited us to meditate on the process of coming to terms with the contours and accidents that shape any given life.”

I speak from the vantage point of ‘outside disability,’ though also - striving to be inside it, to better understand… but no, more than ‘understanding’ the ‘other,’ there’s a shadow self there, a yearning…

I’m someone who tends to see and present myself as (relatively) ‘normal,’ ‘stable,’ a ‘coherent self.’  Knowing all the while that this is a painting over of cracks and crevices, some dark corners, limits and scary places that I’ve visited not-so-willingly at particularly challenging times in my life, and some that I’ve not visited.  At times I’ve longed to go there, to these places, but also haven’t wanted to be there; except maybe for brief spurts like under the influence of hallucinogenics.  So yes, I have always been both resistant and strongly drawn to darker, scarier, unknown and unknowable places – in myself and in others – and these ‘places’ are actually anywhere:  to be found right beneath my feet, gazing down into the depth of grimy sparkle in a city sidewalk. 

When I was coming up in the square-plotted walled-in suburb of my childhood, I was fascinated by and intensely drawn to the worlds of people then labeled ‘handicapped’ and ‘mentally ill’: read their stories voraciously; sought out these ‘others’ in my work as a teenager with other teenagers then called ‘blind and multiply handicapped,’ and later with the heavily gated and sedated so-called ‘chronically mentally ill’ at St. Elizabeth’s, where I fantasized that I could take home (?!) an older woman with multiple diagnoses with whom I was – how can I say it but, in love.   

But now I ask myself, how ‘outside’ was this when this ‘otherness’ lurked yes, right in my own family – my grandfather and uncle suicides, my aunt and cousins profoundly depressed and diagnosed with ‘psychoses’ of various kinds and taking (or not) various cocktails…  But, and here’s a wall: my own parents seeing and presenting themselves as ‘the stable ones,’ and my mom in a constant tension with my aunt over this intense splitting, even now with my aunt many years gone.

Some years ago I had this dream: I was lying in a bunk bed next to my daughter, she must’ve been about 16 years old.  Someone else was in the bed with us too, a male, shadowy.  I was just waking up, turning toward her when she opened her mouth and bared a set of large, sharp, and frightening teeth, animal teeth.

At that time my daughter had been diagnosed (first by herself, then by a psychologist) and was dealing with OCD.  Being her mom put me face to face, scarily right up close to this ‘other-ness’:  We are in our living room and she’s entering a panic attack - obsessing on a girl in high school who said something, I don’t remember what; she scissors off her new dreadlocks and then screams at her shorn head, frightening my son in the next room; yet another teacher is telling me how silent she is.  Most unnervingly, we are travelling and she is convinced we’re being followed, doesn’t feel safe in our hotel room, or on the beach at our favorite pond, or really anywhere; we are at a profound home place for me and it is very beautiful, and even more frightening.  The darkness is in the beauty in a way that I had been inviting and fighting all my life.

In order to be my daughter’s mother, I need to find in me the capacity to face the parts of her – and myself – that are NOT ‘normal,’ ‘coherent,’ ‘stable.’  (The cracks between my aunt and my mom, the gaping holes left by suicides, the internal emptiness of the ‘strange stranger,’ as eco-critic Timothy Morton describes the self.)  This – the nonnegotiable demand of it – is the greatest gift anyone could have given me.   It makes searingly evident that everyone is implicated in the web of disability; each "role" dependent upon another.

Some notes/wonderings about the construct of ‘accommodations’:

If it’s the case that ‘dis/ability’ is a web with all of us implicated, then is it problematic to conceptualize ‘accommodations’ in terms that rely so strongly on a notion of ‘regular’ -- what some people can do that becomes the standard against which ‘other’ people cannot?  If on some level we are strangers not only to each other but also to ourselves, is it problematic that people with ‘disabilities’ are positioned to confront this, go deep with this, while others ride the ‘normal’ curve? Reading Exile and Pride, I do see how this risks romanticizing ‘disability,’ …

And yet, as I trace this ‘stranger-ness,’ this incoherence of self back through my mom’s family, up through my daughter, and, actually, into my own self, maybe the question is whether and what I, any of us does with this potentiality…  

And if it were understood that this is the question and a possibility for all of us – if, for example, we were to recognize all that is going on in a space, say a classroom, that is not ‘readable’ or even necessarily knowable by others or by oneself – what would that mean for “access”? for “accommodations”?

In her remembrance of Sedgwick, Nancy Miller writes:

“Opening the door to the past as the necessary preliminary to change is never easy, but here it’s not the past tense of memory that hurts the most. [And then Eve herself:]  ‘No, the harder part is telling it now; choosing now to thread the viscera of the labyrinth of

          what I didn’t know,

          and when I didn’t know it,

          and what that felt like.’ (1999, 15) (218)

…Eve explicates what love means to her: the connection of an intimacy without which ‘both your soul and your whole world might subsist forever in some desert-like state of ontological impoverishment.’” (219)

And so it is critical that when J bares her animal-teeth, I turn not away but toward her.

VII. Kevin, Butterfly Sutures (on video: )

When I was 5, my family moved to Tokyo for one year. My mom was a promising food scientist and her company rotated its employees to various branches as part of what human resource managers call “talent mobility.” I do not object to this kind of welfare capitalism for its effect on me. I can still remember in the most vivid detail what a thrill it was to leave the airport in a taxi driving on the wrong side of the road.

One night, there was an earthquake. It was either the offshore Sanriku earthquake in December of 1994 or the Kobe earthquake of January 1995. I remember we all took turns sitting in a recliner chair in our living room because the springs in the seat transferred the dull shaking we couldn’t feel just standing around. I remember thinking that we should get under the tables like we practiced at school, but no one sensed the urgency like I did. I hadn’t grasped yet that danger could have gradients. That’s not what the drills at school were designed to convey, anyway.

Developmental psychologists will tell you that a number of crucial things begin to happen between the ages of 5 and 6 for neurotypical children like myself. The child will learn to reason, follow rules, and be fair. He will begin to understand space and time, color, sorting and organization. He will be able to tell a story. He may begin to have organized, continuous memories. When I think back on my time in Japan, I’m thrown into that perennial vortex of uncertainty about how the “me” in Tokyo, age 5 became the “me” in Minneapolis, age 25. I wonder how the chancy city adventures collided with my bodymind’s biological developments. I wonder how something like an earthquake shook my sense of things. Childhood is a time when those string-like synapses are firing in delicate setup, when loose threads start to get tied up.

I remember my mom reading me a bedtime story on the couch. She had just eaten a banana. With a flare of whimsy that was impressive for the working mother wrangling two young kids in a foreign city, she asked me how fast I could run to the trash can and back before she started the story. I remember making it to the kitchen. I remember turning the corner on my way back. And then I remember sitting on the counter some moments later with blood coming down my face.

I had tripped somewhere down the final stretch. I think my big toe might have snagged on the carpet. My face went crashing into the corner of our coffee table. My eyebrow had split open. Later I was told that if I had tripped on a piece of the carpet inches away, it would have been my eye itself, not the brow.

My mom likes to tell the story of me on the way to the emergency room in Tokyo. I asked whether I looked like a football player. I was scared, I guess, but I turned to my mom with a glint in my eye and asked, “Isn’t this a little exciting?”

There was a decision to be made about my cut. The doctors could stitch it up and I would lose most of my eyebrow, or they could put what’s called “butterfly bandage” over it, which is essentially a small adhesive strip that stretches over a thin laceration to hold it together. Stitches would ensure a clean and fast healing process but with more scarring. A butterfly bandage would mean less scarring, but also less certainty that I wouldn’t accidentally open the wound again, which was already on a fairly active part of my face. My mom wanted me to have an eyebrow. I got the butterfly bandage.

The butterfly suture incorporates repair and precarity into dynamic balance. Stitches provide certainty that a wound won’t open, but only by making more incisions. The butterfly suture never promises certainty that the wound won’t open again, but it’s not as if healing is less important. The butterfly bandage keeps things delicate. The butterfly itself suggests a certain gentleness and sensitivity. It encourages you to check your wound often, to make sure things are progressing okay. Strong interventions, like stitches or critiques that run out of steam, come packaged with tradeoffs. They can make disability something too legible. And we’re not interested in critiquing access if its repair necessitates more punctures.

VIII. Clare, The Self (spoken)
I have been asked to write from the perspective of the self—the me.  I don’t like this task because I often have trouble evoking the personal in my prose, especially when the personal constitutes the much too redundant attributes that I’ve tried over the years to conceal.

In a few of my graduate seminars we’ve been talking recently about “writerly” fidelity.  We discussed how we see this authorial loyalty exhibited most profoundly in the mimetic relation between one’s self and their object of study.  In what ways might we mimic, mirror, or shape ourselves to and against our analyses?  At what moment do subject and object hybridize?  When do we become what we do?  Much of this “fidelity” or faithfulness to one’s ideas might be said to surface in theoretical texts that introduce personal narratives in which the individual voice ruptures the more traditional, objective theorizations.  And yet, I wonder:  is any act of writing (or any mode of articulation) truly an intimate affair, fully sopped of the self?  To write is to exteriorize ideas.  Thoughts flow from the channels of the mind to the tips of one’s fingers to the paper or screen.  At the conclusion of this mediated journey, there exists roughly two feet—twenty-four inches—between an individual and his/her creation.  We might say that the self is always “othered” in the very processes of writing.  In other words, to write is to perform a splitting or severing of the self.

My relationship to disability studies has always seemed fraught.  I’ve never felt that I’ve fully fit within its borders; it’s like wearing a sweater that’s too itchy, a bit to short, and tight around the shoulders.  I think I have trouble writing about disability both because it feels too close and much too remote.  In many ways I feel I embody both “self” and “other” when I sit down to talk about “disability.” ….And maybe this is what theory is about—about perpetually wrestling with the pragmatic and abstract, the real and imaginary.  Instead of shuffling between personal and scholarly spaces, might we find a mode of residence in the very crevices between these seemingly contending extremes, these disparate locales?    

I’m in the midst of project right now on the relationship between race and textiles.  After having visited an exhibit at the Met, which explored the global textile trade from the early sixteenth to late nineteenth-century, I began to think about how the clothed body enacts a sort of transnational experience in which the local (the flesh) and global (the exported/imported fabric) touch.  I’m wondering, too, if disability always enacts this sort chafing of the personal against the universal.  The personal would signify individual needs or particularities whereas the universal (implicated in the very term universal design—the very foundation of accommodationist politics) suggests.  Does the particular always undermine—or perhaps rupture—the universal?  Might we think about “quotidian universalities” as a new critical trope within the field of DS? …or, might we read the gap between the “local” and “total” as a place of resistance, or reform?

So maybe it’s particularity (the distinct or idiosyncratic) that’s getting me stuck.  Accommodation is not, I would suggest, universal within and among disabilities.  Many individuals suffering from mental illnesses, for example, are encouraged to expose themselves to “unsafe” or “uncertain” environments.  Accommodations are seen as a mode of enabling, which—in certain situations—will only heighten the sufferer’s symptoms.  For someone struggling with agoraphobia, for example, the avoidance of large spaces will temporarily provide the individual with relief (an escape from momentary fear) but will only intensify his or her anxiety in the times to come.  So accommodation—although proffered as universal—will be, and always is, particular.  Accommodations (although helpful in particular instances) can often do more harm than good.

IX. Jody, Raveling and Unraveling (on video: )

Following the thread, threading a needle, raveling and unraveling, suturing, connecting/dis, stitching, pulling on a loose thread

My sister wendy maybe 6 years old screaming from the bathroom – she’s sitting on the toilet with a crazy jagged gash splitting open her face, like she’s totally opened up, gaping, inside out

Opening and closing, healing, shutting off, separating, knitting a new whole

Periods end sentences (just noticed I haven’t been using them)

Suturing a wound, you bring together two flaps of skin and connect them, creating a boundary between what’s beneath or inside the skin and what’s now outside, shut out.  When you suture together an opening – kevin’s eyebrow – you’re returning things to a status quo…but also refusing to reach to an earlier (and later, ultimate) state in which kevin’s – and all of our – insides are not in separate

But line breaks?

Skating on thin ice:  When I was younger I do remember winters like this.  Winters with such cold stretches that the canal and sometimes even the Potomac River would freeze over thick and long enough that the ferry couldn’t cross to the tiny island that two friends of mine lived on.  And we could ice-skate.   I wore my mother’s old ice-skates very broken in with fraying laces and maybe it was my ankles or maybe the deeply gashed in leather of those skates but my ankles caved in or splayed out, so I’d often make my way over to the side where someone had started a bonfire.  The skates of others would create these beautiful intersecting and floating lines… (I still find myself unaccountably moved by wandering line in life and art.)  Sometimes during a warm spell or into early spring, fissures would appear – subtle at first and then bolder – we’d skate close as we could on a dare until a foot slipped through that boundary.  Later thaw made us forget that thicker skin…

I think we don’t see ice in its process of closing over, we see the boundary, the veneer or skin as a done deal.  Only when it’s cracking open do we get to see fault lines, and then what’s underneath seems more mysterious somehow than the water’s surface in another season.  This is like the opposite of suturing together:  ice ‘outs’ the process and the precarity of inside and out.

X. Anne, In the Crevices (spoken, as finale)
I'm taking the final the role here, of inbetween.

Located in the cracks.

Refusing to crystallize.

In her introduction to queer theory, Annamarie Jagose says, “By refusing to crystallise in any specific form, queer maintains a relation of resistance to whatever constitutes the brings [analytical pressure] to bear on … ‘the open mesh of possibilities, gaps, overlaps, dissonances and resonances, lapses and excesses of meaning where the constituent elements of anyone’s gender, of anyone’s sexuality aren’t made (or can’t be made) to signify monolithically’.”

The first image that arose for me, when asked to think of “cracks”—not an image, really: a visceral reaction, a memory of something I didn’t experience, in my body, but have imagined repeatedly, in day- and night-dreams over the years—is the death of Robert Sanderson, who fell while mountain climbing. Robert was a member of my graduate student cohort in Penn’s English Department, a careful reader, a beloved friend … who declared, with Emerson, that “books were for scholar’s idle times…and I will be idle no more.”  He went to Colorado on a long-awaited trip in the summer of 1978, dreamt that he would die, and the next morning failed to attach his safety rope.

When the first one failed, he fell to his death.

The helicopter that was brought in to retrieve his body crashed.

This created a crevice in my life, one that was long in healing.

So--that the crack is where the light gets in,

the crevice that holds up the mountain climber?

…that’s a hard one.

(But I’m going to try.)

The crack we work @ here—what we refuse to crystallize--is the supposition of a stable self: a self without cracks, one that knows itself, is secure in that knowledge, and able to make it transparently known to others.

The crack we work @ here—what we refuse to crystallize--is the supposition, in families, of knowledge of those we know best and love best: who they are, and what they need, what they can make available for the shared project of building a life together.

The crack we work @ here—what we refuse to crystallize--is the supposition, in teaching, of knowledge of our students: who they are, and what they need, what they can make available for the project of shared learning.

The crack we work @ here—what we refuse to crystallize--is the supposition, in disability studies, that we know what accommodations we need, can request them of our institutions, and be satisfied with what emerges therefrom.

The cracks we work @ here—what we refuse to crystallize--are identifiable, claimable categories, predictable “uptakes” in teaching, learning, living, cohabitating.

The cracks we work @ here—what we refuse to crystallize--are the spaces amongst us, the absences that structure what is present, the gaps Elizabeth Ellsworth identifies between perception and cognition: unconscious yet palpable in their diversity, unruliness, and fertility: “If ‘perfect fit’ were possible, it would in fact guarantee that no learning would happen here.”

The cracks we work @ here—what we refuse to crystallize--are those Eve Sedgwick calls the “near-misses.”

The cracks we work @ here—which refuse to crystallize--are those of the inexhaustible interconnections of the world, the unboundedness of everything that binds us together. The world in which we operate--an infinitely capacious one—invites us to rely on that which we do not know, on the unending supply of the surprising, which lies hidden in the complexities of others’ unconscious, and in our own. Limitlessness, we argue, is a richer way to think about sustaining life than is seeking new and better boundaries.