Tag Archives: ableism

Feeling the Weight: Some Beginning Notes on Disability, Access and Love

This essay was originally published in Issue Ten of Makeshift Magazine.

forsythia

This is a beginning; a dive into waters that I swim every day, but have been taught not to speak about.  I struggle with how to talk about love out loud in a way that holds access and doesn’t diminish love in all its glory, but instead illuminates how ableism twists and threatens love and relationships. Needing to constantly negotiate access for my physical disability within all my relationships in an ableist world has shaped the kind of connection and love I am able to have.  I have been scared to open up the Pandora’s box that holds the intimacies of ableism.  Scared to talk about some of the deepest parts of what disability has meant in my life.

Most days I feel like access and love are like oil and water.  I wonder how the two can possibly coexist.  I am speaking of love broadly, meaning any relationship where there is love, whether that is between friends, lovers, family members (chosen, birth, situational), community members, etc. As a queer disabled woman of color adoptee, I am questioning the very fabric that makes up love and, in particular, disabled people’s access to love—or, rather, the kinds of love (and relationships) that disabled people have access to.  How can disabled people who rely on our loved ones for daily access be our whole selves when that threatens the relationships our access and survival depends on?  And how can this support genuine, deep, loving relationships?

The activist-dreamer-revolutionary part of me believes that access and love don’t have to be separate.  It is the part of me that is committed to revolutionary love, radical love, or whatever it’s being called these days.  It lives off of the idea that somehow, if we work hard enough at this thing called liberation, our lives will be different: institutions, relationships and all.

But my life has proven different.  My lived experience has left me holding one half of my heart in each hand, one for access and one for love, crushed.  I have found myself on cold windy cliffs, staring at the canyon between the two.

I have watched ableism tear apart relationships with people I love.  I have seen access be too much of a barrier for people to be in relationship with each other.  I have made excuses for inaccessibility because I loved people and didn’t want to lose relationship with them.  I have excused racism, sexism, violence, homophobia because I didn’t want to, couldn’t afford to, lose access.  I have asked for access or raised ableism in relationships, only to have those relationships end abruptly. I have stayed in relationships for access and I have been too afraid to enter into relationships because of access. I have had access held over my head, leveraged for able-bodied supremacist means, or treated like a reward for good behavior.  I have had access made invisible or belittled by loved ones; I have had to make access happen so the person providing access didn’t know they were.  I have kept parts of myself from people I love because I was afraid to, didn’t know how to, be whole and complex in the context of needing access.

This is the cruelty of ableism: it robs us from each other.  This is the weight of access.  This is what gets said in whispers, not on the microphone and at the panel.  This is what gets shared in a fleeting glance between us, disabled, sick, crip folks; a recognition, a silent sigh, an unfocused stare.  This is what we don’t share, don’t know how to share, because it is so instinctual, so ground-level, so what’s-the-point-it’s-never-going-to-change.  This is the air I’ve breathed since I can remember, as a disabled child, never knowing it could be any different—never having been able bodied.

The weight of inaccessibility is not logistical.  It is not just about ramps, ASL interpreters, straws and elevators.  It is a shifting, changing wall—an ocean—between you and I.  It is just as much feeling and trauma as it is material and concrete.  It is something felt, not just talked about.  It is made up of isolation from another night at home while everyone else goes to the party.  The fear of being left by the people you love and who are supposed to love you.  The pain of staring or passing, the sting of disappointment, the exhaustion of having the same conversations over and over again.  The throbbing foolishness of getting your hopes up and the shrinking of yourself in order to maintain.  It is an echoing loneliness; part shame, part guilt, part constant apology and thank you.  It is knowing that no matter how the conditions around me change, my body will still not be able to do certain things—it will still need other people, it will still signal dependence, it will still be disabled.

At 30, I have experienced many different kinds of beautiful love, largely because I have had the privilege of not being locked away in an institution, group home or my family’s back room like many disabled people.  And indeed, to question the love I have been honored to experience on this page is terrifying and puts my current relationships, love and access at risk.  But these are the parts of disability justice and liberation that keep me up at night, that have hurt more than any ableist remark, that have left more scars than any surgery.  This is the underbelly of ableism.  This is what I fear we will be left to wrestle with after every building is made accessible and every important policy is passed.  This is what I desire as a queer disabled woman of color adoptee: to be able to love and not have access used as a weapon, and to be able to have access without the fear of losing love.

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Moving Toward the Ugly: A Politic Beyond Desirability

*Femmes Of Color Symposium Keynote Speech, Oakland, CA (8/21/11)

water color painting of an octopus done in greens, yellows, oranges and pinks.Good afternoon, and thank you for having me.  It is lovely to be here with you all.  Thank you to the symposium organizers who have asked me to be here and for your hard work putting this gathering on.  And thank you to ALL the folks who have made it possible for us to be here, including the people who built this building and who clean it and care for it everyday; including the people who are being violently exploited in this country and around the globe for their resources and labor so that we can exist in this air conditioned hotel with access to clean water and food, able to sit in relative safety from military attacks or the police barging in.  And including and honoring native and first nations communities upon whose land we are currently on and whose colonization and genocide have also allowed us to be here. For this too, must be part of our work, for it is intimately connected to being femme.

I would like to call into the room the many other comrades who move with me in this work for community, revolution and liberation.  Especially, other queer disabled women, gender non- conforming and trans people of color.  I do this work with and for them as well as for those yet to come.  I do this work because it is what I wish I had had when I was growing up and coming into political consciousness.

I want to bring them into the room because I want to seriously resist, challenge and shift a culture of celebrityism in our movements.  I do not, and cannot do this work alone.  It is built on the backs of poor people, queers, women of color, disabled folks and so many more who have come before me.  It has taken so much for me to be able to be here today as I am, about to speak to you about being femme as a disabled queer woman of color.  Has taken so much for us to even get to the point where gender and femme would be considered worthy political subjects to speak on.  Taken so many (in particular) women of color who have struggled long and hard to claim a place and be seen as women against the loud static noise of white-womanhood; who have fought to connect gender and race and left a legacy of brilliant work, poetry and story for us to learn from.  Taken so many disabled women of color working to have our lives seen (by other women of color) and our bodies understood as worthy, refusing to let disability be in opposition to “woman.”  Refusing to let able-bodied femmes dictate what femme gets to be and demanding accountability to ableist notions of gender, beauty, sexuality and desire that supposedly represent “all of us.”  Thank you.

It is important to say that I can only speak from my own lived experience, nothing else.  I cannot and do not speak for all disabled people or all adoptees or all queer people.  I cannot and do not speak for all queer disabled women of color or all queer people of color.  I do not speak for the entire disability justice movement—or any other movement.  The disability justice movement, like all movements, is large and diverse and I could never speak or represent it all.

I do this work in service of community.  I tell my story with the knowing that our stories are tools for liberation.  I speak knowing that all of our voices are important.  I speak to leave evidence for the people like me who are searching for reflection and recognition and a “yes, we exist.”  I speak to leave evidence for folks who have been told that disability is not as important as race, or that gender justice will have to wait until after class equality is won.  For folks who have been told that how you feel is less important than what you think; for those who don’t have the luxury of being able to rattle off 10, even 5, writers or books that reflect their identities or experiences.  Those of us who straddle the lines between multiple oppressed communities. For those of us who are working to end violence for all of us, not just some of us. For those of us who truly believe that no one’s safety is more important than anyone else’s, even when we feel unsafe…

I’d like to start our time together with a moment of breath and awareness for this work and what we are holding.  I would like to remind us of our bodies and honor them as we hold the work of those of us who get the lived experience of being femmes of color in liberation and ending violence and oppression so that we all may shine; not just some of us.  It is not easy work and I think it is important to recognize the toll it takes on our bodies, hearts, minds and spirits day in and day out.  I want to acknowledge that many of us here are survivors of one form of violence or another, many of us have been witness to violence; many of us have been violent, caused harm, colluded in violence, willingly or not; and all of us have been impacted by a culture of relentless violence, especially towards women, gender non-conforming and trans people of color, whether they identify as femmes or not.  I would like to acknowledge that we carry legacies of abuse, trauma and violence with us everyday, into our work, into our relationships, into this room.  Our stories about gender and race and class and ability and size and immigration and family are carried in our bodies, breath and spirit …AND we also bring legacies of resistance and survival and love in the face of silence and erasure that carry us through, we bring those into this room as well and they are also with us all the time.   We bring legacies of resiliency that are deep and strong and which we are a part of.  And in all of our work we have a responsibility to grow and cultivate resiliency, just as much as we resist the current systems at work.  We must not only fight against the world we currently have, but also be working to create the kind of world that is inspired by our deepest desires for our selves, our families (whom ever they may be, including chosen family) and our communities.

And it is from this place, where I would like us to always start.  From the world we want, the world we collectively desire.

I always think it is important to say that I’m here today as a queer, disabled, korean woman, transracial/transnational adoptee, raised in a US territory in the Caribbean.  None of which are more or less important.  For me, these are not just descriptive terms; they are political identities, based out of my own and other people’s lived experiences, and I understand them—all of them—to be powerful ways of moving through and understanding the world…

What I have learned from living in the south has helped me to survive as a queer person; and what I have learned from being adopted has helped me to survive as a disabled person.

To me, femme must include ending ableism, white supremacy, heterosexism, the gender binary, economic exploitation, sexual violence, population control, male supremacy, war and militarization, and ownership of children and land.

Ableism must be included in our analysis of oppression and in our conversations about violence, responses to violence and ending violence.  Ableism cuts across all of our movements because ableism dictates how bodies should function against a mythical norm—an able-bodied standard of white supremacy, heterosexism, sexism, economic exploitation, moral/religious beliefs, age and ability.  Ableism set the stage for queer and trans people to be institutionalized as mentally disabled; for communities of color to be understood as less capable, smart and intelligent, therefore “naturally” fit for slave labor; for women’s bodies to be used to produce children, when, where and how men needed them; for people with disabilities to be seen as “disposable” in a capitalist and exploitative culture because we are not seen as “productive;” for immigrants to be thought of as a “disease” that we must “cure” because it is “weakening” our country; for violence, cycles of poverty, lack of resources and war to be used as systematic tools to construct disability in communities and entire countries.

I would like to share two quotes with you that resonated with me for today:

“Those of us who stand outside the circle of this society’s definition of acceptable women; those of us who have been forged in the crucibles of difference – those of us who are poor, who are lesbians, who are Black, who are older – know that survival is not an academic skill. It is learning how to stand alone, unpopular and sometimes reviled, and how to make common cause with those others identified as outside the structures in order to define and seek a world in which we can all flourish. It is learning how to take our differences and make them strengths.”  — Audre Lorde

 

“To tell the truth is to become beautiful, to begin to love yourself, value yourself. And that’s political, in its most profound way.”  —June Jordan

 

I want to say upfront that I don’t identify as femme.  I have struggled with identifying as Femme.  I don’t politically identify as “Femme,” even though I get the lived experience of being a femme of color in so many ways.  And frankly, much of this is because I have had horrible interactions with self-identified femmes of color, much of which has been because of their ableism and ignorance around how ableism, white supremacy and gender oppression get leveraged everyday in service of each other.  Much of it has been because of the palpable culture of ableism within queer people of color community.  And some of it has been because I have spent most of my life as a physically disabled child, youth and adult adoptee of color trying to find my way into “human,” let alone “woman.”

As a disabled child shuffled through the medical industrial complex and as a baby of color shipped across the world to “new parents,” I have felt more like a different species, a freak, an object to be fixed/saved, a commodity.  Like someone who has been owned and whose body has never felt like it was mine.  Like someone who they were trying to make human (read: able bodied, white), if only the surgeries had worked and the braces had stuck.  Like something that never could even get close to “desirable” or “feminine” or “woman” or “queer.”  Like ugly.  Not human.

Many people assume that I identify as femme and even call me femme, but the truth is that “femme” has not felt like a term where I belonged nor was it a place I wanted to be.   I rarely see femme being done in a way that actually challenges and transforms gender, rather than colluding in an alternative enforcing of gender.  Many of the people in this room are more invested in being beautiful and sexy than being magnificent.  Even something as small as the time I nervously asked a comrade femme of color friend of mine to wear sneakers in solidarity with me, instead of her high heels, because I didn’t want to be the only one and didn’t want to get chided from other femmes of color about my shoes (as so often has happened).  She said “no,” but she (of course) “totally didn’t think there was anything wrong with wearing sneakers.”

It seems so basic in our communities, but I think we need to stop making assumptions about each other’s identities and make distinctions between how someone identifies verses what someone’s lived experience isWe need to make the distinction between descriptively femme and politically femme.

In my disability justice work this comes up a lot.  Especially for disabled women of color.  Over and over I meet disabled women of color who do not identify as disabled, even though they have the lived reality of being disabled.  And this is for many complicated reasons around race, ability, gender, access, etc.  it can be very dangerous to identify as disabled when your survival depends on you denying it.

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.) 

And just to be clear, I believe that in order to politically identify as queer, disabled, femme, woman of color, one needs to have a descriptive lived experience to ground it in.  my political identities come directly out of my lived experience.  I never used to identify as disabled (period), even though my life was extremely disabled.  It was not until 1998 that I even started to describe myself as disabled—and even then, it was only descriptively.  It wasn’t until 2002 that I started identifying politically as disabled.

Doing disability justice work, we struggle with creating spaces that are based on how one identifies, because often times, the disabled people who identify as “(politically) disabled” are often white disabled people.  As people with multiple oppressed identities doing work with (our) folks on the margins of the margins of the margins, we need to think carefully about how we are inviting people into spaces and how we meet people where they’re at.

I am descriptively femme of color.  I know this.  This has always been my lived experience.  I was femme before I was queer.  I was grappling with how to navigate gender as a tiny Korean transracial and transnational adoptee disabled girl queered by my physically disabled body.  I grew up in a feminist community, around other powerful femmes of color, but none of whom identified that way.  There was no word for it, it was… just their life.  It was how they had to learn to be, to survive.  It was what they had crafted out of the fires of their desires and loving.  It was part of how they had learned to be magnificent.

Their gender was about being a grounded force to end violence. Their gender was about forging dignity out of invisibility that could slice through femininity that would rather be pretty than useful.  Their gender was about answering the question, what is the work you are doing to end violence and poverty, not what shoes are you wearing. Their gender was about feeding family and raising children collectively; organizing for themselves when no one else would. Their gender was a challenge to the world they lived in that was trying to erase them.

As femmes of color—however we identify—we have to push ourselves to go deeper than consumerism, ableism, transphobia and building a politic of desirability.  Especially as femmes of color.  We cannot leave our folks behind, just to join the femmes of color contingent in the giant white femme parade.

As the (generational) effects of global capitalism, genocide, violence, oppression and trauma settle into our bodies, we must build new understandings of bodies and gender that can reflect our histories and our resiliency, not our oppressor or our self-shame and loathing.  We must shift from a politic of desirability and beauty to a politic of ugly and magnificence.  That moves us closer to bodies and movements that disrupt, dismantle, disturb.  Bodies and movements ready to throw down and create a different way for all of us, not just some of us.

[*share North Carolina story]

The magnificence of a body that shakes, spills out, takes up space, needs help, moseys, slinks, limps, drools, rocks, curls over on itself.  The magnificence of a body that doesn’t get to choose when to go to the bathroom, let alone which bathroom to use.  A body that doesn’t get to choose what to wear in the morning, what hairstyle to sport, how they’re going to move or stand, or what time they’re going to bed.  The magnificence of bodies that have been coded, not just undesirable and ugly, but un-human.  The magnificence of bodies that are understanding gender in far more complex ways than I could explain in an hour.  Moving beyond a politic of desirability to loving the ugly.  Respecting Ugly for how it has shaped us and been exiled. Seeing its power and magic, seeing the reasons it has been feared. Seeing it for what it is: some of our greatest strength.

Because we all do it.  We all run from the ugly. And the farther we run from it, the more we stigmatize it and the more power we give beauty.  Our communities are obsessed with being beautiful and gorgeous and hot.  What would it mean if we were ugly?  What would it mean if we didn’t run from our own ugliness or each other’s?   How do we take the sting out of “ugly?”  What would it mean to acknowledge our ugliness for all it has given us, how it has shaped our brilliance and taught us about how we never want to make anyone else feel?  What would it take for us to be able to risk being ugly, in whatever that means for us.  What would happen if we stopped apologizing for our ugly, stopped being ashamed of it?  What if we let go of being beautiful, stopped chasing “pretty,” stopped sucking in and shrinking and spending enormous amounts of money and time on things that don’t make us magnificent? 

Where is the Ugly in you? What is it trying to teach you?

And I am not saying it is easy to be ugly without apology.  It is hard as fuck.  It threatens our survival.  I recognize the brilliance in our instinct to move toward beauty and desirability.  And it takes time and for some of us it may be impossible.  I know it is complicated.  …And I also know that though it may be a way to survive, it will not be a way to thrive, to grow the kind of genders and world we need.  And it is not attainable to everyone, even those who want it to be.

What do we do with bodies that can’t change no matter how much we dress them up or down; no matter how much we want them to?

 

 What about those of us who are freaks, in the most powerful sense of the word?  Freakery is that piece of disability and ableism where bodies that are deformed, disfigured, scarred and non-normatively physically disabled live.  Its roots come out of monsters and goblins and beasts; from the freak shows of the 1800’s where physically disabled folks, trans and gender non-conforming folks, indigenous folks and people of color were displayed side-by-side.  It is where “beauty” and “freak” got constructed day in and day out, where “whiteness” and “other” got burned into our brains.  It is part of the legacy of Ugly and it is part of my legacy as a queer disabled woman of color.  It is a part of all of our history as queer people of color.  It is how I know we must never let ourselves be on the side of the gawking crowd ever again in any way.  It is the part of me that doesn’t show my leg.  It is the part of me that knows that building my gender—my anything—around desirability or beauty is not just an ableist notion of what’s important, but will always keep me chasing what doesn’t want me.  Will always keep me hurling swords at the very core of me.

There is only the illusion of solace in beauty. If age and disability teach us anything, it is that investing in beauty will never set us free.  Beauty has always been hurled as a weapon.  It has always taken the form of an exclusive club; and supposed protection against violence, isolation and pain, but this is a myth.  It is not true, even for those accepted in to the club.  I don’t think we can reclaim beauty.

Magnificence has always been with us.  Always been there in the freak shows—staring back at the gawking crowd, in the back rooms of the brothels, in the fields fresh with cotton, on the street corners in the middle of the night, as the bombs drop, in our breaths after surviving the doctor’s office, crossing the border, in the first quiet moments of a bloody face after the attack is done.  Magnificence was there.

Magnificence was with me in the car rides home after long days being dehumanized, abused and steeled in the medical industrial complex.  It was there with me when I took my first breaths in my mother’s arms in Korea, and a week later those first days alone without her realizing I wasn’t going home.

Magnificence has always been with us.

If we are ever unsure about what femme should be or how to be femme, we must move toward the ugly.  Not just the ugly in ourselves, but the people and communities that are ugly, undesirable, unwanted, disposable, hidden, displaced.  This is the only way that we will ever create a femme-ness that can hold physically disabled folks, dark skinned people, trans and gender non-conforming folks, poor and working class folks, HIV positive folks, people living in the global south and so many more of us who are the freaks, monsters, criminals, villains of our fairytales, movies, news stories, neighborhoods and world.  This is our work as femmes of color: to take the notion of beauty (and most importantly the value placed upon it) and dismantle it (challenge it), not just in gender, but wherever it is being used to harm people, to exclude people, to shame people; as a justification for violence, colonization and genocide.

If you leave with anything today, leave with this: you are magnificent.  There is magnificence in our ugliness. There is power in it, far greater than beauty can ever wield. Work to not be afraid of the Ugly—in each other or ourselves.  Work to learn from it, to value it.  Know that every time we turn away from ugliness, we turn away from ourselves.  And always remember this: I would rather you be magnificent, than beautiful, any day of the week. I would rather you be ugly—magnificently ugly.

Thank you.

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Edges

This post is inspired out of a recent conversation with the magnificent Wheelchair Dancer.  As two physically disabled women of color, a conversation about our edges is complicated.  There are many edges and, for me, it is hard to know where to begin and how to enter.  Our conversation began around a table in the sun one afternoon with not nearly enough time to share everything. We decided we would continue it here on our blogs and post our thoughts on the same day at the same time.  Her post can be found here

I am grateful for this space to talk about my edges, a place to lay down some of the swirling mass inside my head and body.  When I think about edges, I think about my limits, the places where I need to stop in order to take care of myself.  I think about my physical limits particularly, as someone with a physical disability, and how far is “too far” to push my body.  Many times this was dependent on actually being able to feel my body—a complicated task for so many of us.

As someone assigned female at birth and socialized as a disabled girl and woman of color by white adoptive parents, my emotional edges have seemed impossible to find.  I have always felt that because I have physical limitations, I can’t have emotional ones.  It has felt like I’ve had to learn how to hold emotional space for others, in order to redeem my physical “shortcomings.”  As a girl and woman of color adoptee it felt like this was a way to “fit in,” to not be a burden, a way to finally feel wanted.  It was a way that I could give back, instead of always being made to feel like I was taking too much, instead of constantly being called “lazy.”  A way I could hold other people and have them be dependent on me, instead of the other way around. Pushing past my emotional edge has looked like giving too much emotionally, denying my own emotional needs for the sake of others, holding emotional intensity even when I didn’t want to or wasn’t ready to, shrinking, never sharing my emotions with people or learning how to make others feel emotionally (comfortable) close to me, but rarely having people I felt emotionally close to or comfortable with.

This strategy of emotional edge pushing also aligned with being feminine and indeed, as people who are (socialized to be) feminine, we are taught that it is our job to take care of other people’s emotions, denying our own.  As a disabled girl of color, wanting to try and find any way into “woman,” not having emotional edges seemed to be almost desirable; or rather, it seemed like it would make me more desirable.  The cruel cutting twist that heteronormativity seemed like the only route back to being desirable after ableism had pushed me out and adoption had pulled (taken) me away, and left me with a life-size puzzle of asian-disabled-womanhood to put together on my own.

I have lived a life of pushing myself too far, well past my edge, partly to survive and partly because I had no clue where my edge was.  And this is still true in so many ways.  Ableism is so seductive, so alluring, so all-together-spell-binding, that I find myself erasing my edges and redrawing them, until I become laid up sick in bed or physically injure myself.  I am constantly navigating access or connection, “my edge” or being with community.  The pull of connection and relationships, is always what gets me.  It excites me and makes me abandon my edge.  It is the part of me that foolishly thinks I can be someone who can party hop, work a 14 hour day and then go and socialize, doesn’t need sleep, doesn’t need to bring my wheelchair.  It is internalized ableism.  It is the seduction of ableism.  And it has been the only way I have been able to be part of queer people of color community and social justice community in any real way.

I know what’s at stake.  The edge is no mystery.  I know that disabled and sick people are coerced in small and big, covert and blatant ways everyday to harm ourselves by systems, institutions and the very people we love and who love us.  I know that the life I have lived, the amount of people that I know, the relationships I have been able to build, the access to love, sex, desire, laughter and community that I have had are a direct reflection of (and have been dependent on) me pushing past my edge.  Otherwise, I could not have been part of the work that I so love and the communities that have saved my life.

This should not be the way it has to be.  We cannot keep asking our kin to harm themselves to feel like they belong or to be worthy of connection.  We cannot keep expecting that ableism (and capitalism) will do the work for us to keep disabled people segregated or propel us to push, those of us who can, past our edges.  This is what I think about when I think about edges.  I know I am one fall, one slip away from a very different edge; one that doesn’t have as much give and take.  One that cannot do stairs, even on a good day, even with enough shame to motivate me.

I am learning to find my edge.  My edge is different on different days.  Some days I can feel my body, some days I can’t.  Some days the pain makes it too hard of a place to be.  Some days I can handle what is revealed from feeling, some days I can’t.

There is memory there, mixed with blood and bone, cells and tissue.  There is history that you cannot turn away from embedded in these veins.  There is a telling of war and pain, division and separation, loneliness and longing, humiliation and violence, resiliency and returning.  There are stories of a land, a family, a body, a heart, a life.  Knowing my edge means knowing all of this, as well as when I feel tired and when I need to rest.  Knowing my edge means knowing myself and all the ways my body (heart) has been pushed past what was good for it.  It means knowing inside and out that belonging does not have to be proven or earned or sacrificed for; it is for all of us.  For all of us.

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Changing the Framework: Disability Justice

How our communities can move beyond access to wholeness

(Written for the RESIST Newsletter, November, 2010.  Initially posted on the RESIST website.)

spider web stretched between rocksIn my time doing social justice work, I have found that disability is something most people know very little about—and that includes seasoned, fierce and well-respected community organizers and activists. People usually think of disability as an individual flaw or problem, rather than as something partly created by the world we live in. It is rare that people think about disability as a political experience or as encompassing a community full of rich histories, cultures and legacies.

Disability is framed as lacking, sad and undesirable: a shortcoming at best, a tragedy at worst. Disabled people are used as the poster children of environmental injustice or the argument for abortion rights. For many people, even just the idea that we can understand disability as “not wrong” is a huge shift in thinking.

Towards interdependency

Our communities and movements must address the issue of access. There is no way around it. Accessibility is concrete resistance to the isolation of disabled people. Accessibility is nothing new, and we can work to understand access in a broad way, encompassing class, language, childcare, gender-neutral bathrooms as a start.

We must, however, move beyond access by itself. We cannot allow the liberation of disabled people to be boiled down to logistics. We must understand and practice an accessibility that moves us closer to justice, not just inclusion or diversity.

As organizers, we need to think of access with an understanding of disability justice, moving away from an equality-based model of sameness and “we are just like you” to a model of disability that embraces difference, confronts privilege and challenges what is considered “normal” on every front. We don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them.

In no way am I saying that accessibility is not important—it most definitely is. We cannot have disability justice without it, but we want to question a culture that makes inaccessibility even possible. Just because disabled people are in the room doesn’t mean there is no ableism (a set of beliefs that favors non-disabled people) or that people won’t pretend we’re invisible.

This work is about shifting how we understand access, moving away from the individualized and independence-framed notions of access put forth by the disability rights movement and, instead, working to view access as collective and interdependent.

With disability justice, we want to move away from the “myth of independence,” that everyone can and should be able to do everything on their own. I am not fighting for independence, as much of the disability rights movement rallies behind. I am fighting for an interdependence that embraces need and tells the truth: no one does it on their own and the myth of independence is just that, a myth.

The power of disability justice

Disability justice has the power to not only challenge our thinking about access but to fundamentally change the way we understand organizing and how we fight for social change.

It has the power to bring our bodies back into our conversations. What do we do with bodies that have limitations, that are different (no matter how much we want to change them)? How do we acknowledge that all bodies are different, while also not ignoring the very real ways that certain bodies are labeled and treated as “disabled?”

Disability justice activists are engaged in building an understanding of disability that is more complex, whole and interconnected than what we have previously found. We are disabled people who are people of color; women, genderqueer and transgender; poor and working class; youth; immigrants; lesbian, gay, bisexual and queer; and more.

We are pushing for an understanding of how ableism affects all of our movements for justice. We are drawing connections between ableism and other systems of oppression and violent institutions. We are pushing for a more nuanced and fierce interrogation of the medical industrial complex and understandings of health, wellness and healing that aren’t rooted in ableist notions of bodies and what is considered “normal.”

We are trying to understand how we can build organizing and community spaces that are mixed-ability, cultivating solidarity between people with different disabilities. We are working to move together, as disabled people, through a world that wants to divide us and keep us separate.

Disability is not monolithic. Ableism plays out very differently for wheelchair users, deaf people or people who have mental, psychiatric and cognitive disabilities. None of these are mutually exclusive, and are all complicated by race, class, gender, immigration, sexuality, welfare status, incarceration, age and geographic location.

Finding home

As a queer, disabled woman of color, disability justice feels like a political home for me, a place where I can engage in conversations about disability and race and gender and queerness and capitalism and more.

I tried to look to the disability rights movement, but I saw very few leaders who reflected me, and I found that, for the most part, disability was being talked about as an isolated single issue. Having been involved with racial justice, queer liberation, reproductive justice and feminist movements most of my life, I have rarely encountered spaces that addressed disability or connected it with other issues.

What does it mean to not have the luxuries of deciding when to use the bathroom in the place where you live, having alone time or going to visit a loved one in their home? How do we re-imagine relationships that center interdependency? How do able-bodied people move from simply “supportive allies” to political comrades who are actively incorporating a disability justice understanding into their work and lives?

We cannot fight for liberation without a deep, clear understanding of disability, ableism and disability justice. The bodies of our communities are under siege by forces that leverage violence and ableism at every turn. Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable. How do we build across our communities and movements so that we are able to fight for each other without leveraging ableism?

I imagine a world where our organizing and activism is less segregated, where our movements and communities are accessible and don’t participate in the isolation of disabled communities. I imagine places where we fight for whole and connected people, families and communities.

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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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Wherever You Are Is Where I Want To Be: Crip Solidarity

clasped hands with boldly colored thread twisted around each wrist.I want to be with you.  If you can’t go, then I don’t want to go.  If we are traveling together, sharing political space together, building political family together, then I want to be with you.  I want us to be together.

We resist ableism dividing us.  I resist my disability being pitted against your disability.   We will not be divided.

What does crip solidarity look like?  Between crips?

We are traveling, trying to track down food.  My chair can’t go into this restaurant, your dog isn’t allowed in that restaurant; so we will order in.  You can’t fly to the meeting, so we will come to you—all of us.  They won’t let you go to the bathroom because they say you’re “too slow”, so we will demand they do—and make them wait for you—together.  Sometimes we are comrades, sometimes we are strangers, but we will stay together.  We move together.

I know what it is like to be left behind, left out, forgotten about.  I know you know as well.  We vow to not do that together, to each other.

I am not “giving-up” an evening out with able bodied friends.  This is a glorious evening in with crip love as opposed to a night out without you (and without parts of me).  Loving you more helps me to love me more.  Loving me means loving you.

Because the truth is, I am continually giving-up the able-bodied-washed version of myself that people have come to know.  What I came to know as a disabled child because I never knew things could be any other way.  For most of my life it has been easier to perform a survival able-bodied-friendly version of myself, rather than nurturing the harder to live disabled-self-loving version of who I ache, desire and need to be.  Because it has often meant the difference between a-little-bit-more-connection and a-little-less-isolation.  But what is the point of connection, if you still feel isolated and alienated from your self?  And what is that connection built upon and from?  How do I want to be connected?

And it is not easy.  But being together helps.

And when taxis won’t take us because of one of us, or both of us.  And I can’t use mass transit, but you can.  Then we will use our crip super community powers and do what we do best: make shit happen; make something out of nothing; and survive, one ride, one pill, one stop to rest at a time.  Together.

We will find other ways (create our own ways) and talk liberation and access and interdependency with our comrades.  We will weave need into our relationships like golden, shimmering glimmers of hope—opportunities to build deeper, more whole and practice what our world could look like.  We will practice what loving each other could look like every day.  Courageously.  And we will help each other to do it, in the face of seductive ableism; in the face of isolation as queer people of color, again; in the face of isolation from political community and movements, again.  We will help each other love each other and, in doing so, love ourselves.

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Desiring Revolutionary Bodies and Movement(s)

I believe that disabled people have so much to give and so much to teach from our lived experiences.  We have so much that our movements can learn from.  We have so much to learn from each other, cross-disability.  I believe that disability justice can be something that shifts and changes how we have been taught to organize; how we have been taught to move.  There are many different ways of moving through the world.  And the more I learn, the more mistakes I make, the more victories I have, the more time I take to reflect, center and listen to myself and those around me, the more I keep coming back to disability justice.

For so long I have tried to (been forced to) squeeze myself into ableist ways of doing things.  The way I thought about activism and the revolutionary body was never with disability at the center.  And I was so hungry for things that reflected me, that I settled for crumbs: a little queer here, a little people of color here, a little Asian here, a little feminist here, a little woman of color there.  And part of it was that I wasn’t raised by disabled parents and family members and the community I was raised in, though disability was everywhere you looked, never talked about disability—and certainly not in a political way.  And I was so used to doing without and being separated from pieces of myself—being cut right down the middle; having to survive on crumbs as a transracial and transnational adoptee of color, that I didn’t ask.  I didn’t say what I knew inside:  something is wrong.

And I was seduced by ableism, as we all are, as I still fight against.  The seduction of ableism is so strong, sold to us as so absolutely desirable that we don’t notice when there are no disabled people in our lives.  We don’t notice when we never have to think about disability and ableism.  In fact, we prefer it that way.  The seduction of being desirable—of even the possibility of being desirable—is enough to keep us hooked.  As I fight against the ableism inside of me, it at once forces me to shift and queer what desire means.  It at once forces me to shift and queer what I desire.  It forces me to shift and queer racist, gendered and capitalist notions of desire; of who and what is desirable.

And as revolutionaries, I believe we have to shift and queer the kinds of revolutionary bodies, minds, thinking, and movements that we desire as well.

Most of us are beating down the door, trying to get in to have access to the skills, conversations, strategy and knowledge that is kept at the top/bottom of stairs, bound by language, locked by pace.  Most of us are aching for cross-movement work with an integrated anti-ableist analysis and commitment that includes (but doesn’t stop at) access; that understands access within a political framework.  Some of us have turned away completely—why should we fight to be a part of something that doesn’t even want us?  That doesn’t even include us?  That doesn’t even desire us—that doesn’t even know the first thing about how to desire us; about how we want to be desired?  Some of us will not or cannot turn away, because these are our people too, we are you and you are us—how can we be divided?  You are my people too, am I not yours?  So we have carved out ways that we can stay connected anyway we can, pushing for more; slowly and firmly.  And many of us have felt all of these at one time or another.  And all of us are doing our work: to survive, create, organize, fight, build community, build movement, and tell our stories.

Someday we will all look back at the segregation of our organizing and movements. How many cross-movement, social justice, multi-issue organizations, groups, collectives working for liberation would dare move forward with all men or with all whites?   Someday we will talk about the days long ago when non-disabled folks never included disabled people, politics, histories and legacies in their work.  Because it is our work, we are each other in so many ways.

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