Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit

This post was originally written for the INCITE Women of Color Against Violence blog.

This summer, Detroit was an opening for me. And not just because it was the first time that there was a Disability Justice track at the Allied Media Conference (AMC) or because of any workshop or plenary I attended. Detroit was an opening for me because I got to spend over a week creating collective access with a group of twenty-three disabled folks and our non-disabled comrades. I got to spend eight days getting a glimpse into a different world and experiencing a kind of interdependency that let me loosen my shoulders; that let me breathe.

Creating Collective Access (CCA) was about re-thinking how we, as disabled and chronically ill people, engage in movement spaces. This was about imagining something more and knowing that we had to do it for ourselves because it is so rare for movement spaces to ever consider disability and access in ways that go beyond logistics; in ways that challenge the ableist culture of our work. This was about being very clear that we wanted to shift the individualized and independent understanding of access and queer it and color it interdependent. This was about building crip solidarity. We wanted to create a liberated space. We would pool our resources: body and ability, financial, material and more. We would not just think about disability as separate from class, age, race, queerness, family, children, gender, citizenship, violence, but we would understand it as intimately connected. We would think, not just about “conference and workshop time,” but we would also think about social time and what social spaces were accessible and how we would make sure no one was isolated or left out. Because in our movements much of the relationship building, socializing and bonding is done in very inaccessible ways in very inaccessible places—we know this all too well.

It all started with need.   About a month before the AMC, access was the number one thing on our minds.  What will we do?  How will we get to food and afford enough personal attendants to come with us?  Who will push wheelchairs?  How much walking will there be?  Who will help you go to the bathroom?  How will we manage the pain, the schedule, and the pace?  Where will we stay and will it be accessible (the majority of community housing just wasn’t an option)?  How much will access cost?

We were hit with the reality of having to be in another city for an extended period of time, under intense conditions; the same intense conditions that frame most conferences.  We knew it would be long days, stretching into late nights.  We knew everyone would be stretched thin and we knew that meant something totally different for us.  We knew we could make it through, by squeezing ourselves, as we’ve done before, into ableist practices of how bodies should function and perform, but we also knew what that would mean for our bodies (and our hearts) while it was happening and once it was all done.  We wanted to be able to stay in our bodies as much as possible, take care of our disabled selves, and be part of the community that was coming together for the AMC and the USSF.  We wanted to be whole and connected to ourselves, each other and other activists and organizers—was this possible?

We started to dream: how could we use this as a way to build community, put disability justice into practice and deepen our understanding and analysis of what it means to do this work together?  What if we invited other crips to do this with us—crips who were coming to the AMC and were probably agonizing over the very same things?  What if we did community care in a way that made space for many different kinds of bodies?  What if we made a commitment to each other to move together and centered our access and care around queer and trans crips of color?  What if we tried to create the kind of world we want to live in?  We do it in our disability justice work, so why not try and create it for the time we’re in Detroit?  CCA began as a hope and a dream to make what we need.  CCA is a reflection of the courage, resiliency, and creativity that disabled folks have in the face of an inaccessible and ableist world.

The bottom line was we needed each other.  Interdependency is not a choice.  We were not going to be able to get through the AMC and traveling to another city without each other.  We didn’t know what the environment would be like, how many people would be there and what kind of access needs would arise on-the-spot, as they always do.  We would be building the plane as we flew it.  The thought of thousands of social justice folks from the left converging at the USSF was an anxiety-provoking access nightmare, in and of itself.   But we knew if we had each other, we would be okay.  Together, the three of us, three queer crip women of color, got to work.

We drafted and put out a call to other disabled folks who were coming to Detroit and who wanted to be part of a community-led access effort.  We made a blog, explaining what we were trying to do and our vision.  We were clear that this was interdependent and we invited people to be part of creating this with us.  Leah worked to get scent free information out to folks and create a scent free room, while Stacey and I worked on a basic structure for access and communication. We scrambled with three weeks to go and came up with a model of pods.  We knew the disabled people who were coming would already have some type of access plan in place and we knew it would be with people they trusted and had relationships with.  Together, each grouping formed a pod and our goal was to connect the pods to each other.  We asked people to tell us about their pod’s access needs and what they could offer and contribute.  It was broad.  Some people were able to walk and get food, others were better at coordinating; some people had access to credit cards and others would need cash to be available; some people had personal attendants or able bodied friends/family members with them who could also help with getting food, driving and pushing wheel chairs.

I had done collective access before, but with three people, including myself; or for a disability justice meeting or when traveling with one other disabled comrade.  I had never done anything like this before with twenty-plus people, half of whom, I had never met before, on our way to a city that many of us had never been to, all in a container of shifting how we understood access, past just survival.  This time, we were all jumping together.  And we flew.

We called ourselves the Pod People and we worked seamlessly together with great affection and enjoyment.  It was truly a collective effort, centered around a simple value of care.  Everyone pitched in getting food, helping to serve food, audio describing, reaching, pushing, texting, calling, asking, offering.  We schemed together to get more accessible rooms opened for us in the dorms, access to a refrigerator and the accessible shower key from the dorm staff.  Everyday, we had lunch and dinner together, no one had to worry about not being able to eat because they couldn’t get into a restaurant, couldn’t get to the grocery store or couldn’t walk far enough.  And no one had to worry about being isolated while they were eating, as often happens to disabled people when they are in movement spaces.

When there were social events, we all talked about it and had two groups, the folks who wanted to go and the folks who wanted to stay in; we made sure no one was left out and checked in about access all the time.  We stayed up the first night after dinner talking about disability and race and queerness and invisible disabilities and coming out as disabled and bodies and gender and geographic location and our struggle to find community.  Some people were just starting to identify as disabled, having never called themselves “disabled” out loud before.  Others had been doing disability justice work for years and still others had been doing this work for decades.  A lot of us were trans, gender queer and gender non-conforming, most of us were women of color and almost all of us were queer.  We formed an almost all disabled space that centered all of who we were.  Amazing.

One of the most important pieces of CCA for me was a continued commitment to move together as crips and comrades.  Every time I attempt to move through the world with other disabled folks, I am always so astounded at how hard it is for disabled people to stay together, literally.  I watch how the world separates, isolates and divides us, so that we cannot move together.  I watch how it is constructed for us to move with non-disabled people, instead of each other; and how it discourages folks with different disabilities from moving together.  Trying to move with a group of disabled people with different disabilities is very hard, takes enormous amounts of problem-solving, energy and creative solutions.  To me, one of the most powerful opportunities of CCA was another chance to figure out how we can stay together and what it would take to create a world where we understand the weight of what “access” means.  So that when I say something is inaccessible, you don’t just think “there’s no ramp” or “there are no places to sit” or “there’s no close, accessible, free parking.”  Instead, you feel. You feel the weight of what inaccessibility means to us.  You understand inaccessibility to mean isolation, shame, exclusion, disappointment, loneliness, anger, privilege, sadness, loss of community and disconnection.  For eight days, it was amazing to be with people who know what “accessibility” means; who know and feel the weight of it; and who are working to transform it.

I learned so much and was rejuvenated from my time with the pod people.  Disability requires us to re-think “independence” and how we engage in movement spaces, down to how we think, move and communicate, down to our very bones.  As movements committed to social and economic justice, where are the disabled people in our communities, organizations, bases, and movements?  Are they isolated?  How are we re-imagining access in ways that include, but are not limited to disability; that encompass class, language, gender, mamas, parents and children?  What would access beyond logistics look and feel like?  Access that allows people to not just be included, but maintain their dignity and connection to their communities?  How do we care for each other in ways that allow us to stay connected to our bodies and stay connected to each other in order to build the kind of world that can care for us all?  We are learning and trying and learning and practicing and learning again.

With my deepest gratitude to the pod people: I will forever be changed.

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we are worth the ocean

i used to be steady.  i used to be steady as a rock.  nothing could move me, rattle me, shake my vision.  sometimes to a fault.

i miss her, i miss my fearless self.  she was younger, stronger, braver–so sure.  and now i feel like i have become a bundle of fears, worrying about other people more than myself, and seeing where i’m wrong.  and maybe this is what happens to women of color, we get our strength beaten out of us by a world that would rather see us as shadows.  maybe i am mourning for something that will never come back.  maybe this is better, now i can see all sides of something.  almost too well.

what am i afraid of?  maybe this is what happens after you’ve lost some things.  and that losing never really leaves you.  maybe this is what happens after you’ve seen the damage that fearlessness can do.  maybe.

but still, the question bubbles up inside of me, rolls around my head, slinks behind my every move: what am i afraid of?  there is nothing left to lose now, except the thin illusion of the shell of safety.  i am standing by the ocean asking it to promise not to drag me down before i dare to enter.  that is not how the ocean works.  it is not answering.  it is laughing at me, mocking me, pittying me.

and the horizon lies in front of me, the land at my back.  or is it the other way around?  how do you know when it is time to leave?  maybe that’s where she has gone, my fearless self, maybe she has gone to the horizon.  maybe she is not lost at all.  maybe she is just waiting for me.  calling me to come back to her, after all, she must miss me, as she rides the sea foam of each wave.  she must miss the rawness of my pain and the thunderous beats of my heart.

i miss her.

she is worth swimming against the current for.  she is worth the ocean.  we are.

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Video: Recognizing Each Other: Adoptees of Color

Recognizing Each Other Video Transcript

Just over a month ago, I met up with two other queer adoptees of color to talk about adoption.  Mariama Lockington is a queer black transracial adoptee and So Yung Kim is a queer korean adoptee, both of whom have done writing and work around adoption.  (We had over an hour and a half’s worth of footage, so it took awhile to whittle it down and pull out some of the highlights and pieces from what was shared.)

As with my last video*, whenever I get to hear queer adoptee of color stories, I am entranced.  I crave adoptees of color that want to talk about adoption, what it was like for us growing up and how we are still being impacted by adoption—and always will be.  I crave time and experiences with other adoptees of color that is not mitigated through, by white people, white parents and non-adoptees.  It is so rare that I get to hear queer adoptees of color talking about our lived experiences.

I love hearing our words (all of them, in whatever way they come tumbling out) and feel ever-so appreciative, especially knowing how long I went without ever hearing any of our voices tell our own stories and stumble through sharing and asking and loving.

As adoptees, it is so important for us to tell our stories and to leave evidence for each other.  We are often isolated, individualized or discouraged from connecting our stories with each other.  There may be adoptees who will watch this in secrecy, who have never met another adoptee, who never talk about being an adoptee with anyone in their life or don’t think about how adoption impacts them.  It is not easy.

Our stories are all so different and complex and they all have value–we have value.

We will not be polarized, made one-dimensional and pitted against each other.  I don’t want to be used by non-adoptees to prove, justify, and support arguments about adoption that don’t include us, profit off of us or don’t speak to our whole, full and various lived experiences.  There is no “good adoptee” or “bad adoptee,” as many of us may have come to understand.  We are complicated, our lives are complicated, our histories are complicated; our identities are complicated.  And as adoptees of color, all of us have the lived experience of being people of color who were adopted, and that thread connects us all.

Immense love and gratitude to Mariama and So Yung for sharing some of your story, knowing that it’s not all of your story.  Thank you for your honesty and humor.  And most importantly, love and gratitude for being visible (as adoptees), for being recognizable to me and for recognizing me.

(*This is the second video in a series of videos I am making for Leaving Evidence.  They are video snap shots of some of the brilliance and deep complexities that we hold individually and collectively, as a people.  We must leave evidence for each other.)

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Reflecting on Frida Kahlo’s Birthday and The Importance of Recognizing Ourselves for (in) Each Other

self portrait of Frida wearing a white brace-like aparattus that wraps around her chest and torso four time and come over her shoulders. A broken cement column is in place of her spine going from her neck to her waitst, a sheet covers her naked body from the waist down.  There are metal nails nailed into her on her skin and the white sheet, her breasts are exposed and she is crying, though her expression is stoic.   Today is Frida Kahlo’s birthday.  In honor of her and her work, I took time to sit, breathe and reflect on Frida and all that her work has meant to me. I often think about Frida and what it means to recognize each other, as disabled queer women of color.  I don’t know if Frida would have described herself as “disabled;” if she would have even used that language, that thinking.  Would she have thought of herself as what we understand as “queer,” using whatever language and words she chose around her open bisexuality?  I don’t know.

I found Frida when I was young, and it seems I have been continuing to find her my whole life.  Frida was originally introduced to me when I was a young teenager as a feminist symbol; as a “strong woman of color artist.”  As one of the few non-black woman of color thrown in amongst majority white women, I remembered her.  It was only later that I found out she, like me, had polio as a child and about her bisexuality.  For me, Frida was a symbol of one of the few disabled queer women of color that I knew of.  Her paintings conveyed things beyond words about bodies, death and pain at a time before I had the tools and language with which to talk about disability, surgeries, legs, spines, backs, pain, womanhood, suicide, shame, desire and self-hate.  She was a necessary reflection of parts of me when I felt so alone, cut-off, isolated and like a freak.  Her paintings were some of the only visual images of disabled women of color that I had, period.  And the fact that she was painting herself and deciding how she wanted to be seen and understood was even more powerful.

Frida helped me to recognize pieces of myself and for that I will forever be grateful.

To me, Frida was descriptively disabled and queer, even though she may not (or may) have identified as such or used that language.  When I say “descriptively disabled”, I mean someone who has the lived experience of being disabled.  They may not talk about ableism, discrimination or even call them selves “disabled,” but they know what it feels like to use a wheelchair, experience chronic pain, have people stare at you, be institutionalized, walk with a brace, be isolated, etc.  There are many people who are descriptively disabled who never become or identify as “politically disabled.”  When I say “politically disabled,” I mean someone who is descriptively disabled and has a political understanding about that lived experience.  I mean someone who has an analysis about ableism, power, privilege, who feels connected to and is in solidarity with other disabled people (regardless of whatever language you use).  I mean someone who thinks of disability as a political identity/experience, grounded in their descriptive lived experience.  (The same is true for descriptively queer, descriptively woman of color, descriptively adoptee and so on.)  I don’t know if Frida was politically disabled or queer.

This distinction is helpful for me, because the majority of the disabled women of color (especially disabled queer women of color) I meet are descriptively disabled, not politically disabled, as was I for a long time.  Or they are descriptively queer, not politically queer.

in this painting, frida is in her wheelchair, next to a portrait of Dr. Farill.  She is dressed in a white top and black long skirt and holds her paint brushes in one hand and her palette in the other.Though it is hard, it makes sense to me because the risks of being a political queer disabled woman of color are great.  The risk of more isolation, more stigma, more annoyance (“You’re bringing that up again??”), more visible-invisibility can be too much to even consider.  The risk of being yet another woman of color who is thought of as “too much.”  I meet queer women of color who are descriptively disabled, but have enormous resistance to thinking of themselves as disabled. Narratives of “independence,” “miracle,” and “super crip” abound or the cost of being a political disabled woman of color is too high and survival as a disabled person depends on not connecting their disability with their race…or queerness.  (And the cold, hard truth is that there is just as much ableism within queer communities as there is within straight communities—don’t be fooled.)

The risk of having to begin to have conversations about ableism, access and power in our families, with our caregivers, attendants, co-workers, friends and lovers is tremendous, often times threatening the very delicate web of access we’ve managed to create—threatening our very survival.  How do you talk about queerness when it is assumed you have no sexuality as a disabled person, while simultaneously you are washed with racist gender stereotypes about women of color’s desire and sexuality?  What does it mean to be stripped of our sexuality at the same time we are hypersexualized at the same time that we are infantilized at the same time that it is assumed we will shoulder the brunt of the work?  There is great risk in visibility.

And even when we are visible as disabled queer women of color, sometimes we don’t even recognize each other.  We don’t recognize each other because we’re not taught how to do it; because we’re taught how to be afraid of each other.  Because we are taught how to not recognize each other more readily than we are taught how to find each other.  Where are we? How do we find each other? And how do we do the work to recognize each other and to be recognizable to each other?  Sometimes, as is so often the case with queerness (and disability), I see you, but I don’t know if you see me.  I feel this acutely with adoptees.  We share space together, but often times we don’t know how to recognize each other.  We look right through one another, or avoid each other as if we were taught some kind of secret script.

I wonder about Frida and my recognition of her and if she would have recognized me.

I want you to recognize me.  And I want to leave evidence about how I made myself recognizable to you (for you) and about how I tried to find you—to make it easier for the next time we are faced with ourselves/each other.  Because there were so many times I chose not to recognize myself inside of me as well—there were times I avoided pieces of myself.

We can learn how to recognize each other.  We can teach each other.  We must practice recognizing each other.  And we need as many visible queer disabled women of color as possible to help us get there.  As many of us who are living our lives and are able to leave trails and stories about the way we felt, looked, moved, survived and created.   As many of us who refuse to let our disabled queer struggles get subsumed by the able bodied queer movement as only queer; who refuse to let our disabled people of color stories get subsumed by the white disability movement as only disabled; who refuse to be invisible, for the sake of each other.  As many of us who are cultivating the elder in us all to be here (in whatever way we can) for those who come after us, because we need them and they will need us.

So, today, on Frida Kahlo’s birthday, I sit in gratitude for her paintings.  They were an avenue of recognition for me.  They were a way for me to recognize pieces of her, and in turn, a way to recognize pieces of my self, and allow me to recognize others.  I thank her for her life and her honesty and all of the complexities she holds.  Thank you.

photgraph of frida laying in bed painting.  Diego Rivera is next to her, looking on and holding her palette.“I paint myself because I am so often alone and because I am the subject I know best.”  –Frida Kahlo

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bodylandhome

drawing of heart over red grid linesIf you asked it, this body would tell you that it is tired.  That i run it harder than i should.  That i don’t take care of it the way it deserves.  It would tell you about sterile white lights and sterile white voices beaming in on it from every direction.  Demanding results, scouting for hidden keys.  It could show you the places that were dug up, the pieces of it that were taken, the scars on the bodyland that will never fade.  It could show you where tendons were moved, sensation was stolen–a casualty of a battle lost long ago by both sides.

It would show you how i have my sister’s laugh, my father’s face, my mother’s hands and spirit.  It would tell you that there were memories past on that only exist in feeling, color and dreams.  It could recount the strength of my mother’s arms, the way she cried and her pain in letting me go, passing me on to my mother’s joy and oblivion in taking me in. It would tell you that i was already gone.  It would tell you that maybe i was never found and that i am still finding.  It would tell you that it loves me, even though i don’t know how to love it.

If you asked it, it would tell you that we made it through; made it out.  And we are trying to make it home.

(This piece was written at the Azolla Stroy* queer and trans of color disabled and chronically ill love and zine making workshop at the 2010 Allied Media Conference. Thank you to all of the amazing people that were there and shared such powerful, tender, moving and inspiring pieces of yourself.  i love yall.  Look out for the Azolla Story Zine!  *The Azolla Story is a closed online community-movement-home for queer disabled people of color. )

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Creating Collective Access–Check It Out!

Are you a crip and/or someone with a chronic illness that is going to be in Detroit this summer for the Allied Media Conference and/or the US Social Forum?

We know that for many of us, access is on our minds when it comes to traveling, navigating the city, movement spaces, buildings, sidewalks, public transportation, rides, the air, the bathrooms, the places to stay, the pace, the language,the cost, the crowds, the doors, the people who will be there and so so so much more.

Would you like to be connected to a network of crips and our allies/comrades who are working together to create collective access?

What is collective access?  Collective Access is access that we intentionally create together, instead of individually.

Most of the time, access is placed on the individual who needs it.  It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend.  Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people).

Access is complex.  it is more than just having a ramp or getting disabled folks/crips into the meeting.  Access is a constant process that doesn’t stop.  It is hard and even when you have help, it can be impossible to figure out alone.

We are working to create mutual aid between crips and beyond!  Things we are thinking about as possibilities for collective access in Detroit…

READ SO SO MUCH MORE HERE: http://creatingcollectiveaccess.wordpress.com/

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Video: Crip Sex, Crip Lust and the Lust of Recognition

Here is the first of many-to-come videos of snap shots of some of the brilliance and deep complexities that we hold individually and collectively, as a people.  We must leave evidence.

Recently, I met up with Leah Lakshmi Piepzna-Samarasinha and Ellery Russian for an evening and got to capture some of our musings, sharings and stories.  Whenever i get to hear crip stories, i am entranced.  i love hearing our words (all of them, in whatever way they come tumbling out) and feel ever-so appreciative, especially knowing how long i went without ever hearing any of our voices tell our own stories and stumble through sharing and asking and loving.  It’s so important for us to tell our stories–to each other.  As much as we can.  There are so many different stories that we have to tell about (queer) crip sex and about our relationship to crip sex, to sex period, to sexuality and more.  Our stories are so different and complex and they all have value–we have value.  Much love and gratitude to Leah and Ellery for sharing some of your stories, knowing that it’s not all of your story.

Click here for the transcript of this video:  Crip Sex Video Transcript

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