Theory in the Flesh: Mixed-Ability Organizing, Access Needs, and Internalized Ableism

“A theory in the flesh means one where the physical realities of our lives—our skin color, the land or concrete we grew up on, our sexual longings—all fuse to create a politic born out of necessity.”

This Bridge Called My Back

Last week at Sins Invalid we had our second mixed-ability conversation.  Sins is a San Francisco/Bay Area based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as members of communities who have been historically marginalized.  Our performance work explores the themes of sexuality, embodiment and the disabled body.  Conceived and led by disabled people of color, we develop and present cutting-edge work where normative paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all individuals and communities.

Our first mixed-ability conversation was about five to six months ago in the fall.  These conversations are internal to the organization, and are co-facilitated by two incredible organizers in the Bay Area: Malachi and Stacey.  Malachi is down for fun shit like justice and ‘is active in organizations serving low-income queer and transgender formally or currently incarcerated people, sits on a few boards, does free consulting for community organizations who are broke but are changing the world and believe that no one should be tossed away’ (from the Burns Institute site).  Stacey aka cripchick is a disability justice activist and organizer for the National Youth Leadership Network, an organization that builds power among people with disabilities between the ages of 16-28 years old in order to support young people in their role as the next generation of leadership in the Disability Rights Movement.  Last fall I collaborated with Stacey in developing a Sins workshop about new media, disability justice organizing, and accessibility.  She facilitated the workshop and I planned and promoted it.

It might be an obvious claim to say that Sins Invalid, as an organization, takes disability justice seriously.  What may not be so obvious is the deliberate labor that must be built in to the praxis of such theoretical frameworks.  This is what our mixed-ability conversations are for: collaboratively building an approach towards increasing accessibility, towards making a space where we can co-exist as uniquely embodied subjects as we work to maximize our own skills—as they are—and develop them as such.  Developing our skillsets as they are in relation to our embodied selves: in a way that is sustainable, accountable, responsible, and interconnected.  This is enormously challenging and ambitious.  I think our intentional inclusion of the co-facilitators shows the ways in which Sins takes seriously that which is otherwise too often irritably dismissed by the larger social justice culture of the Bay Area, and the U.S. more broadly: what it means to do mixed/cross-ability organizing, how, and why.  That said, this is what I have been thinking about: what does it mean to develop our skillsets as they are in relation to our complexly embodied selves—in a way that is sustainable, accountable, responsible, and interconnected—in the context of access needs and internalized ableism?

Four-hour time blocks have been scheduled for each facilitated conversation.  Six people total are involved in this collective dialogue: Patty and Leroy—the fabulous co/founders of Sins, Nomy Lamm, the facilitators, and myself.  Nomy is a queercrip fat Jewish cultural activist.  S/he’s a Sins Invalid performer, and a Creative Writing MFA student at SFSU.  Her fantastical queercrip world-making creativity permeates all that she does as a cultural activist: s/he writes, performs, sings, is a musician, and directs SinsArtist in Residence program.  We meet at ‘Sins Central,’ with homemade goodies in tow.  Patty makes the best chili for us with diced onion and bell pepper, chopped chard stems and carrots, mustard and maple marinated tempeh, pinto beans, tomatoes, oregano from her yard, cumin and a ton of garlic served with sauerkraut, chives, and homemade cornbread.  Theory in the flesh requires that we nourish our flesh, indeed.

I juxtapose access needs with internalized ableism because in the context of disability justice praxis, the two are so bound up with each other in complicated, nuanced ways that to think we can talk about one without the other is simply a mistake—an oversight.  From the disability rights movement of the 70s and 80s, access needs typically fall into a liberal reformist framework, delimiting the radical potential of such a concept.  Certainly this is not to dismiss the hard work, lessons learned, and legislative milestones such as the 1990 Americans with Disabilities Act (ADA).  What I’m interested in thinking about are the ways in which the state works to keep the idea of ‘access needs’ in a single-issue political framework, whereby our imaginations become restricted to thinking about access solely in terms of curb-cuts, ramps and handicap parking.  Clustered together in our meeting space at Sins, Patty makes this crucial point:

“In capitalism, the fact that you have a ‘need’ is like an overall net drain, as though we’re somehow not going to be worthwhile.”

Patty’s analysis politicizes the idea of ‘access needs’ by calling into question the very systems that produce ‘needs’ as net-drain in the first place: capitalist political economy and its construction of disability.  In other words, the normalization of society’s inaccessibility posits ‘access needs’ as an individual problem to be overcome.  Generally speaking, the disability rights movement prides itself on this overcoming through its precarious integration into an ADA-compliant ableist society.

Policymaking and development around societal issues of accessibility and universal design only go so far if we do not ask at least two things: why are people with disabilities systematically marginalized to begin with, and secondly what effects has systematic marginalization had on the subject formations of such a heterogeneous constituency?  Patty’s politicization shows how capitalism not only stigmatizes accessibility in terms of cost benefit analysis but also how through such stigmatization, the bodies associated with access needs become devalued in terms of capitalist ideas of production and worthwhile-ness.  Meaning, neoliberal capitalism renders disabled people second-class citizens, essentially sub-human status.  It is this connection to internalized ableism that I have been thinking about: what does it mean to articulate ‘access needs’ from the standpoint/sitpoint of people with disabilities who have otherwise been subjected to ableist violences that demean the notion of access, and how does this impact mixed-ability organizing?  From here, Patty makes another critical point:

“Internalized ableism is a way to police bodies through shaming.  And then, intersections of race, gender, and class might exacerbate the shaming of internalized ableism.”

This particular moment in the discussion is where my own thoughts are still wading—or, more like treading—in deep ocean water far from the shore with strong currents pushing salt water into my mouth and up my nose as I struggle to keep my head above the tide.

In her recent blogpost “More on radical love- the gift of interdependency,” Wheelie Catholic (Ruth) beautifully illustrates what it means to do mixed-ability praxis.  She writes, “I recall years ago when a friend sent her teenage son over to volunteer to help me with some physical tasks.  He lacked confidence because he was dealing with a learning disability in school.”  Ruth situates her story in the context of access and internalized ableism.  Disability shame is at work here: this young man lacks confidence—feels badly about himself—as though there’s something about him that’s not good enough (according to dominant, colonialist pedagogies).  There’s nothing inherently not good enough about him, he’s only not good enough according to capitalist standards: in order for capitalism to continuously reproduce itself, it needs docile bodies and minds to fill the cogs in its machine.  This shame works to stigmatize his disability so that the violences of ableist subjection and rehabilitative discourses seem justified in the name of for-profit productivity and so-called ‘freedom.’  Ruth explains:

“I told him to concentrate on what he could do well rather than dwelling on what he could not.  Although it’s fine to encourage someone to work on skills, it’s really important to emphasize what they are good at.”

Ruth speaks to the importance of meeting folks where they’re at in terms of maximizing our own skills as they are.  This is a politic born out of necessity.  Feels-like-drowning but then we nourish the pained flesh and catch our collective breath.

Allies Not Excuses

Allies Not Excuses

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