Moving Toward the Ugly: A Politic Beyond Desirability

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

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 is.  We 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.

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.

Access Intimacy: The Missing Link

There are many ways to describe intimacy.  For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy.  But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it.  This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape.  I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability.  I think Access, as a framework, is powerful for so many of our lives.  Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy can also happen in many different ways for mamas and parents, women of color, queer and trans folks, etc…  Anyone can experience access intimacy.

I have never had words for access intimacy before.  For years, I would feel it or crave it, but not know how to describe it. It has always been just out of reach; just beyond my grasp.  I have mistaken it for emotional or political intimacy, sexual attraction or romantic desire.  I have mistakenly assumed that it would be there based on one’s identity or experience.  I have grappled with how to describe the closeness I would feel with people who my disabled body just felt a little bit safer and at ease with. There have been relationships that carried emotional, physical and political intimacy, but sorely lacked access intimacy.  And there have been relationships where access intimacy has helped to create the conditions out of which emotional, familial and political intimacy could grow.

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs.  The kind of eerie comfort that your disabled self feels with someone on a purely access level.  Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years.  It could also be the way your body relaxes and opens up with someone when all your access needs are being met.  It is not dependent on someone having a political understanding of disability, ableism or access.  Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives.  Together, we share a kind of access intimacy that is ground-level, with no need for explanations.  Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access.  I don’t have to justify and we are able to start from a place of steel vulnerability.  It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are.  It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

In my life, access intimacy is something that has been hard won, organic or at times even felt magical.  It has taken me by surprise, showing up with people that I never would have expected to have that kind of “access connection” with.  It has been exciting and relieving, like a long slow exhale.  I don’t know where it comes from or how it happens.  It has felt like an unspoken, instinctual language between different people, like an entirely unique way of being able to communicate and connect.  Similar to meeting someone you just “click with,” access intimacy has felt like a distinct form of attraction, desire and energy on to itself.

Access intimacy is something I am coming to understand that I need in my life; something that I cannot (and don’t want to) live without.  I need it to literally be my whole self because access is such an intimate part of my life as a queer physically disabled woman of color adoptee.  Without it, relationships exist under a glass ceiling or split by thick frosted windows, with huge pieces of myself never being able to be reached. Without it, there is survival, but rarely true, whole connection.

Access intimacy is not just the action of access or “helping” someone.  We have all experienced access that has left us feeling like a burden, violated or just plain shitty.  Many of us have experienced obligatory access where there is no intimacy, just a stoic counting down of the seconds until it is over.  This is not access intimacy.  There have been numerous relationships in my life where I have loved people very deeply, but never fully felt safe with them around my access.  So many relationships where I knew I could only ask for or share so much, without getting snapped at, chided or being punished with reluctant passive aggressive access.  So many times where I was too afraid, because of the lack of access intimacy, to speak up and voice what I needed or what I couldn’t do, resulting in being isolated or getting very badly physically hurt from pushing myself too hard, in some of the worst cases.

Access intimacy is not charity, resentfulness enacted, intimidation, a humiliating trade for survival or an ego boost.  In fact, all of this threatens and kills access intimacy.  There is a good feeling after and while you are experiencing access intimacy.  It is a freeing, light, loving feeling.  It brings the people who are a part of it closer; it builds and deepens connection.  Sometimes access intimacy doesn’t even mean that everything is 100% accessible.  Sometimes it looks like both of you trying to create access as hard as you can with no avail in an ableist world.  Sometimes it is someone just sitting and holding your hand while you both stare back at an inaccessible world.

It has looked like relationships where I always feel like I can say what my access needs are, no matter what.  Or i can say that I don’t know them, and that’s ok too.  It has looked like people not expecting payment in the form of emotional currency or ownership for access.  It has looked like able bodied people listening to me and believing me.  It has looked like people investing in remembering my access needs and checking in with me if there are going to be situations that might be inaccessible or hard disability-body-wise.  It has looked like crip-made access.  It has looked like crip solidarity.

In the last half decade of my life I have been able to experience many different forms and levels of access intimacy.  Before that, I was not even in a place where I could have had access intimacy with anyone.  It has only been in the last seven years that I have come into myself as a politically disabled person enough to begin to experience or desire access intimacy, even on superficial levels.  Looking back, there have been only a handful of relationships in my life where access intimacy has existed.  And in most of them access intimacy was not instant, but built and cultivated, with me bearing the brunt of the work.

For the first time in my adult life, I am experiencing access intimacy that is not just painstakingly built over years, conversation by conversation, but is already in fertile existence, ready to grow.  For the first time in my life I am in disabled community meeting sick and disabled folks and experiencing a kind of mutual access intimacy that feels like family.  For the first time in my life, I am in relationships with able bodied queer people of color experiencing access intimacy that is beyond explanation and belief.  For the first time, this year, I am experiencing a level of access intimacy in my intimate relationships and home life that I have never experienced before.  It has been both amazing and saddening, now having something that actually cares for me.  And it, like emotional intimacy, is also a deep risk because it would be devastating to lose and requires maintenance.

Now, when I describe relationships, I include access intimacy along with my many other descriptors.  I am watching it, studying it, bearing witness to it as it grows, evolves and shifts and as I learn all the different ways that access intimacy can exist.

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.)

In 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 interdependence

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 interdependence? 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.