Petra Kuppers

How are you feeling today? How do others make you feel today? What are the words you use to describe yourself, and how do you feel about them? Which ones change–are some words and labels yours forever, are some in flux? How do you know, what do you know?

Create a word cloud. Write down all the associations you have with the term “disability.” Try not to censor yourself: let your mind freely associate. You will likely find insults among the material you garner–let that be OK, for now, as we need to acknowledge all the histories we bring to disability. When you are done, group the terms together in categories that make sense to you. What kind of concept map emerges?

Cultural identity … is a matter of ‘becoming’ as well as of ‘being’. It belongs to the future as much as to the past. It is not something which already exists, transcending place, time, history and culture. Cultural identities come from somewhere, have histories. But, like everything which is historical, they undergo constant transformation. Far from being eternally fixed in some essentialised past, they are subject to the continuous ‘play’ of history, culture and power.

Far from being grounded in a mere ‘recovery’ of the past, which is waiting to be found, and which, when found, will secure our sense of ourselves into eternity, identities are the names we give to the different ways we are positioned by, and position ourselves within, the narratives of the past.

—Stuart Hall¹

How does your disability word cloud relate to Stuart Hall’s quote? Do you see a dawning of new formations, of cultural identities that offer a past, a present, a future?

If there was a country called disabled,
I would be from there.
I’d live disabled culture, eat disabled food,
make disabled love, cry disabled tears,
climb disabled mountains and tell disabled stories.

—Neil Marcus²

Disability. And Disability Culture. Naming oneself part of a larger group, a social movement or a subject position in modernity can help to focus and conjure energy. You can use the label— disability— as a pathway to others. Solidarity can be found— precariously, in improvisation, always on the verge of collapse. You might still hurt. You might still be left out in the cold, unable to get into a building. You might still be left behind by an inaccessible bus. Your voice might be disregarded, your contribution to knowledge industries deemed worthless. But you can sing, hum, dance, wave into community, for a moment, for a respite, for a call and response, for a mourning for an impaired world or for a celebration of a breath.

Disability culture. Say what? Aren’t disabled people just isolated victims
of nature or circumstance? Yes and no. True, we are far too often isolated.
Locked away in the pits, closets and institutions of enlightened societies
everywhere. But there is a growing consciousness among us: “that is not
acceptable.” Because there is always an underground. Notes get passed
among survivors. And the notes we’re passing these days say, “there’s power
in difference. Power. Pass the word.”

Culture. It’s about passing the word. And disability culture is passing the
word that there’s a new definition of disability, and it includes power.

—Cheryl Marie Wade³

The circle widens, and shifts. The first principle of Disability Justice, as developed by Sins Invalid, a disability justice-based performance project founded in 2005 and centered in the Bay Area:

INTERSECTIONALITY “We do not live single issue lives” –Audre Lorde. Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world “invalid.”⁴

When reading these quotes, seeing this world of disability reflection unfold, does anything change in the way you feel about yourself, about your bodymindspirit, your place in the world? How is your sense of worth woven into wider value schemes? Who invalidates you? How does this show up in the world— and in your own feelings toward yourself? How does it show up in your built environment, the choices city planners make, the choices made in medical triage or emergency evacuation plans?

From when I got brought into disability justice around 2008, when it felt like there were only twenty of us radical disabled BIPOC weirdos in the world talking about disabled issues, collective access, and ending capitalism, to now, when there were tens of thousands, maybe more, radical disabled BIPOC and allies making zines, campaigns, survival programs, hashtags, books, albums, collectives, taking over organizations, writing about pleasure and desire, fighting inside prisons and institutions, saving Medicaid, fighting care rationing, making friends. And most of all: staying alive. We had made a movement.

—Leah Lakshmi Piepzna-Samarasinha⁵

Disabled people and our resiliencies can open new insights into what it means to stay alive—and to live, in vibration, in a world that becomes more and more disabled by the choices politicians make, by capitalism’s grasp, by toxic colonial legacies. Feel the word, “disability:” stigma and hope, sadness and oppression, pain and pleasure, insider and isolation: live in durational practice and sense wider echoes.

Notes

Exercises adapted from Petra Kuppers: Studying Disability Arts and Culture: An Introduction. Palgrave Macmillan, 2014.