Finding Each Other: Building Legacies of Belonging

*Opening keynote speech at KQTcon 2018, the first national LGBTQ Korean conference in the United States, in New York City on 4/7/18.

 

To listen to the live recording from the conference, click here: KQTcon 2018 Keynote. (Thank you to Asia Pacific Forum for the recording!)

 

[photo of the words “queer korean” and a heart below them written in light in the air at night next to a fire.]

Thank you so much for having me here today.

 

I want to extend gratitude to the folks on the planning team who put this conference together. Anyone here who has ever put on a big event knows that it takes a lot of work. And specifically, I want to acknowledge, not only the logistical and grunt work put into this conference, but the work it takes to go from having an idea to actually deciding to make it a reality. It takes a lot of initiative and courage to put yourself out there like that and step into leadership. So, I want to appreciate all of the different types of labor that you all have put into this.

 

Thank you, because I grew up in and spent most of my life in places where I never had access to any kind of spaces like this. So, I don’t take it for granted and I know how much this kind of gathering would have meant to me when I was younger. I hope none of us take this space for granted because there are so many queer and trans Koreans who would give anything to have and be in this type of space; would give anything to be here.

 

I want to send gratitude to the people who built and care for this building every day and all the unseen and forgotten labor that goes into that. The people who clean the toilets, dispose of the trash, mop and vacuum the floors, care for the grounds. The people whose land this originally was as well as all of those who have been displaced since then.

 

 

I’m honored to be speaking at the first national gathering of queer and trans Koreans in the US. Thank you for inviting me to be here. Thank you all for being here and for being part of this space.

 

I want to acknowledge what it means to have someone like me speak at this conference. What it means to have a queer physically disabled Korean transracial and transnational adoptee woman survivor raised in the Caribbean speak in this space. I never thought that anything like that would happen. I am queer Korean and yet, often times I’ve learned that “queer Korean” or “Korean” doesn’t always mean or include me. And I am sure that many of you have also felt this.

 

I want to acknowledge what it means to have a visibly, physically disabled Korean speak, when most queer and korean specific events or events put on by queer Koreans rarely, if ever, mention accessibility on their event information. Queer and trans Koreans who rarely, if ever can even engage in a conversation with me about what it means to be queer and trans, korean and disabled. How can we talk about gender without talking about bodies and disability? How can we talk about what it means to be Korean without talking about the impact of violence, imperialism, colonization, war, militarization and legacies of abuse and separation on our bodyminds, psyches, hearts and relationships? And that is completey connected to ableism.

 

I want to acknowledge what it means to have an adoptee speak when so many queer Korean spaces haven’t done the best job at making space for us. When so many of us are queer and share the experience of finding “queer and trans family” and searching for our people, our history, our place within the korean diaspora. When we represent the pain of separation, unthinkable survival and resilience in the face of life-altering violence, returning, reunification and the unbreakable longing of Korea and the Korean diaspora.

 

I say all of these things because it is not lost on me that many of the reasons I was invited to speak, are the very things that have made it so hard for me to be part of queer and trans Korean, and Korean american community. I say this because whenever we come together it is our differences that get emphasized and the contradictions they represent become more acute. And we have a lot of differences. We may all be queer Koreans, but we are also many more things. When I think about what it means to be queer and Korean, I cannot separate it from all of who I am.

 

I can’t separate it from being an adoptee or being disabled or growing up in the Caribbean or being a survivor. I can’t separate it from growing up in a small, rural feminist community, surrounded by lesbian and straight women who worked side-by-side to respond to violence against women and children. I can’t separate it from the reason I was even on that island in the first place. Can’t separate it from the surgeries I had once I got to the US that I can’t even remember because I was so young. Can’t separate it from growing up as a visibly, physically disabled child. Can’t separate it from coming into my queerness in the South, in a vibrant and loving queer community that was predominantly Black. Can’t separate it from navigating QTPOC spaces with a visible, physical disability. Can’t separate it from my Korean mother asking if the reason I don’t have a husband is because of my disability.

 

How do you divide-up and measure longing? My longing for queer people and queer love. My longing for Korea and a family to which I will both always belong and never belong. The longing to be able to have at least one conversation with my Korean mother without a translator before she dies. The longing for queer Koreans who want to hold all of who I am, not only when it’s convenient or for political gain. The longing for both queerness and Koreaness, which led me to the most magnificent love I have ever known (or known of) with a queer Korean from the South.

 

I say all of this to say, what is Koreaness? What does it mean if it means something so very different to all of us? What does it mean to be Korean specifically in the US, in this historical moment as the fears of nuclear war rumble through the country? What does it mean to be part of the Korean diaspora in the US, given the role of US imperialism, war and occupation in Korea? In this historical moment of US racial and immigrant justice movements as the legacy of state sanctioned violence against Black people continues to roar forward, against a backdrop of ICE raids, deportations and seething anti-immigrant contempt.

 

I say this to ask, where does my story fit into the legacy of queer and trans Korean people and community? Where does your story fit? And how can we commit to sharing our stories with each other—our whole stories—without fear of losing each other? Because the one thing I know about queers and Koreans is that we know how to find and hold on to each other—sometimes to a fault. We know how to take care of our own, even if we are strangers to each other, because we know we are never truly strangers to each other. And we know we are all we have.

 

For example, I think about the ways that queer APIs in the South would stretch for each other and take care of each other. I think about the times when I opened my home to strangers, without hesitation, who needed a place to stay or a meal to eat or a safe person to be with. I think about the times when that same loving care was extended to me and how these were the ways we learned how to survive. These were the ways we knew we would survive because we did not have the luxury that queer APIs did and do in other parts of the country. This was one of the ways we built small islands of belonging in the middle of a raging river.

 

 

In preparing to write this keynote, there was a part of me that thought, What do I have to say that’s even worth anything? A lifetime of isolation and not belonging anywhere doesn’t go away easily. But then I thought, if I don’t belong here, where else would I belong? How can I not belong here, when I am queer Korean? How can my story not belong here, when my story is queer Korean? As queer and trans Korean people, if we don’t belong to each other, then to whom else do we belong? If we don’t love and accept each other, then who else will?

 

Because on the one hand, it’s true, I don’t belong anywhere, like many of you also probably feel. And on good days, it can feel like a slow, dull, throbbing ache, while other days, it can feel acutely, excruciatingly unbearable. Belonging can be a hard thing to believe in. It can be a hard thing to believe you deserve. It can be a hard thing to be able to even feel.

 

Most days the canyons that loneliness and isolation have carved out inside of me feel impossible to cross. They feel insurmountable and I know most of you in this room have those moments too. But then I think about the powerful legacies I am a part of and the people who have risked their lives for me to have a shot at something more than hopelessness. I remember all the people we’ve lost to loneliness and despair and isolation and longing and pain, whether their own or someone else’s. And I muster myself up and I choose to try; I choose to leap; I choose to love and reach out—to you and to myself. I choose to share; I choose to trust.

 

In that spirit, I want to share a little bit of my story with you; my queer Korean story. It is not the full story by any means, but it is a practice of hope; a practice of trust; a practice of love for you, my kin; and a practice of risk—because hope, trust and love are always risks we take with each other and ourselves.

 

 

I am a queer disabled Korean transracial and transnational adoptee. I was adopted from Korea at 6 months old, by white parents on to the small island of St. Croix in the US Virgin Islands. I was adopted a hair before the peak of Korean transnational adoption and I am one of the few Korean adoptees that I know of who were sent to the USVI.

 

I contracted polio before I was shipped to the US and I arrived in the US needing immediate medical attention and spent most of my childhood in and out of doctors and practitioners’ offices. Most summers I had a surgery on either my ear or my leg—or sometimes both.

 

I experienced so much trauma and violence in the medical industrial complex (MIC) that even now, I still try and avoid it at any cost. On top of the regular onslaught of ableism that disabled children face, I was also sexually abused in the MIC. I know it had everything to do with being a disabled girl of color; being a tiny Korean girl whose body was handed over to a white male establishment by white parents who didn’t know how dangerous that was. I know that the violence of adoption helped to normalize the violence I experienced within the MIC, both the gross abuses of power, as well as things that are still considered standard practices. It was impossible to separate the violent erasing of my disabled self via ableism from the violent erasure of my Korean self via transracial and transnational adoption.

 

I wore a large fiberglass brace on my leg until midway through college and it was excruciatingly hot under the Caribbean sun. It would give me blisters and pain and I hated wearing it. It often made me stand out, along with my limp and being Asian, and to this day, I don’t know what it is like to not have people constantly stare at you; constantly watch you. I often think that disability and being a Korean adoptee contributed to my ability to be a public speaker: I am used to being a spectacle and having people stare at me. People ask adoptees of color just as intrusive and offensive questions as they do visibly physically disabled women of color. You are public property, a game show riddle to figure out, a problem to solve.

 

I never felt like my body was my own. It always felt like someone else’s. It was always a never-ending barrage of how it was wrong: too disabled, too ugly, too awkward, too un-feminine, too undesirable, too Asian, too Korean, too uncontrollable, too tragic. Something to be pitied; never desired, never loved.

 

I was raised in a very rural, tight-knit feminist community. The year I was adopted, my adoptive mother, along with 9 other women started the Women’s Coalition of St. Croix, a direct service organization that helped victims of domestic violence, rape and sexual assault. Before that, there were no services on the island for people to go to and because of this, they became a catch-all for families in crisis. I went to countless Take Back the Night marches and helped stuff envelopes and make purple ribbons. I learned early on that violence was everywhere. It was systemic and more than just a couple of “bad apples.” It was happening in every community.

 

In the early days of the Coalition, I would play in the hallway with kids while their mothers sought support. I remember being young and having our neighbor from up the street and her two children spend the night at our house, so they could catch a plane and escape off the island in the middle of the night to escape her abusive husband. I remember going to court cases about domestic violence with my adoptive mother and playing with the other kids while our mothers met for hours on end at meeting after meeting.

 

I am a child of the movement and I witnessed women organizing for themselves when no one else would.

 

I grew up around Audre Lorde and Gloria Joseph, meeting Angela Davis and getting to hear her speak, getting to watch Sweet Honey and the Rock perform and having conversations about oppression at the dinner table. I learned about oppression from an early age and tried to engage my classmates in conversations about their white or male privilege in grade school. But even through growing up in such a politicized community, no one ever taught me about ableism or what it meant to be Asian, East Asian or Korean. No one ever connected the violence they were fighting against with the violence I was experiencing within the MIC. We never talked about my parent’s roles as colonizers on the island or what it meant for a white straight couple to adopt Korean children and decide to raise them on an island with virtually no other Korean people.

 

I was lucky that I got to grow up around proud lesbians (women of color and white women) who had been with their partners for years, and who were as normal to me as the “you can’t beat a woman” T-shirts we wore for the annual Women’s Race fundraiser. I was lucky to be surrounded by lesbian and straight women who consistently got called “dykes who hated men” and “wanted to break up families” because of the anti-violence work they were doing. Lucky that all through my adolescence, my adoptive mother would tell me over and over, “You know, Mia, if you or any of your friends are gay, it’s O.K. You can always come and talk to me about it.” And though at the time, I thought I would die from sheer embarrassment, I look back now and know how lucky I was, as a queer youth to have that kind of support. I wouldn’t fully come into my queerness until the end of college, but I know that no matter who you are—that was rare for that time.

 

I didn’t grow up culturally Korean and had no support in figuring out how to move through the world as an East Asian woman (adoptee with a disability) in the Caribbean and later the South. I remember another queer Korean adoptee once describing it as being faced with a giant puzzle she was left to figure out on her own, with no picture to follow and no instructions to go on. I remember feeling her words in my heart when she spoke and the way her grief, frustration and resilience seemed indistinguishable from each other in that moment.

 

Even when I was asked to speak at this conference, I was surprised, because my story is not usually the queer Korean story told, but it is a queer Korean story. What do we mean when we say “queer Korean?”

 

My story is not the story most people want to hear or are used to hearing. It’s too disabled or not disabled enough; too adoptee or not adoptee enough; too survivor or not survivor enough. It’s not Korean enough, not Asian enough, not immigrant enough, not queer enough, not Caribbean enough, not American enough. It is, I’m sure, like a lot of your stories: complicated and full of contradictions; full of the hard and soft. It’s not easily categorized into neat boxes and requires people to hold multiple truths at the same time.

 

And yet, it is part of the queer and trans Korean diaspora. And so am I. As are you and your stories.

 

I belong everywhere and nowhere at once. We belong everywhere and nowhere at once.

 

 

I know it can be hard just to show up. It can take a lot of courage just to be present. Belonging must be built and grown collectively. And that is part of what we’re doing here today: the work of building and creating belonging. It is a skill we can learn and teach others, a practice we can always be engaged in and a decision we can choose to make at any given moment.

 

I want to acknowledge all of you, for the labor of showing up and being present (especially those of you who were nervous about it), as well as all of those who aren’t able to be with us.

 

There are many who will never know queer Korean community or some who have been so burned by queer Koreans and queer Korean community that they have given up on it. Or those who are afraid to be part of queer and trans Korean community. Or those who long for it so badly, at the very same time that it terrifies them.

 

We often crave, the very things that scare us: love, community, belonging, vulnerability, trust, accountability, family. It reminds me of that James Baldwin quote: “Love takes off the masks that we fear we cannot live without, and know we cannot live within.”

 

I witness this all the time in my transformative justice work. I witness people being terrified of that which they desire most. Whether it is healing, accountability, trust, transformation, vulnerability, truth, belonging or courage. So, they often find endless ways to push it away, distract themselves with something else or they continue to choose their masks again and again.

 

We will all be faced with moments when we have the opportunity to risk lowering our masks—to risk true vulnerability with each other. Those moments when we have a chance to soften and let someone else in and let ourselves out. Those moments when we risk being hurt or having our hearts broken or bruised. Those moments when we can feel just how ill-fitting our masks really are.

 

And we don’t always choose to lower our masks. Many times we choose to tighten our masks closer to us. None of us are perfect and we are all growing. As a queer Korean I talked to earlier this week said, “I’m flawed and we’re all flawed.”

 

But I think everyone who is here for this conference is, in some small way, loosening their mask, even as we cling to it. Even as we peek out a little from behind it. Everyone here, even if it’s small, is letting their desire for queer Koreans, and queer Korean desire, be seen and recognized. Even if many of us would also roll our eyes at the thought of “queer Korean community,” or at the thought of “community.” A lot of us have become jaded and rightfully so. It’s not enough to come together and talk about the good things, we also need to be in principled struggle with each other because that’s how we grow and deepen our connection with each other.

 

I told a queer Korean friend of mine about this conference and they said in a long sorrowful sigh, “I just don’t know what queer Korean community holds for me anymore.” I told another and they scoffed, as if to say, that’s a nice idea, but it’s not possible—or worse, it’s not worth it.

 

Because after all, what is “community?” What is this thing, “community,” that we talk about so much? This thing that we romanticize to no end and that has let so many of us down, even as we refuse to let it go completely? We talk about community all the time, but many of us struggle to know what that actually means and how to actually build it, especially when so many of us are so isolated.

 

I travel from coast to coast and most people I meet do not feel connected to a community. This is especially common for those of us living in the west or under capitalism. Many people don’t even know what community is or how to know if they have it. Folks want to be connected to community, but they don’t feel they are. Even those who are thought of as “in community” often feel lonely and isolated too. And across the board, most people don’t feel like they belong.

 

Maybe this is just a part of what it means to be part of a diaspora. Always feeling in-between; always feeling that familiar longing and grief for what was lost, what was taken, what never should have been. I am part of different diasporas and each one pulls at me constantly. And each one holds that constant refrain: I am, but I’m not; I am, but I’m not.

 

I am Korean, but I’m not Korean. They are my family, but they’re not my family. That is my home, but it’s not my home.

 

I was 25 when I returned to my Korean mother and family for the first time since being given up for adoption when I was a week old. I remember many days, especially in those first days as I struggled with jetlag, waking up on the floor in my parent’s room surprised to find my mother sleeping next to me with her hand in mine. This was a language for which we did not need a translator; a language that couldn’t be translated, even if we had spoken the same language. I remember silently watching her sleep, as she had probably watched me. I remember wishing that I knew her and that she knew me, and knowing that I am her daughter and yet I am not. Knowing that though we share blood, a laugh that fills a room, and an experience that fundamentally changed both of our lives forever, we were also strangers in many ways.

 

We are, but we’re not. We ‘re not, but we are.

We belong everywhere and nowhere at once.

 

 

One of the things I always think of whenever I think about queer and trans Koreans is the way that so many people I know and love stay connected to their families. Though their families often do not understand or are hostile to their queer and trans identities, they refuse to let each other go. Though they might have to hide who they are, for decades, maybe even their entire life, they continue to return to each other. To me, there is something so powerful about that kind of love.

 

I know it is not perfect and there are many painful complexities about it. I know that the silence that is expected in return for connection is dangerous, harmful and neither just nor right nor fair. I know that it can be hard to tell guilt, shame, denial and abuse from love. And—both/and—there is something so deeply magnificent about the ways that we can still love and care and show-up for each other, even through our pain. In the ways that a heart can break and still keep loving at the same time. And how in so many ways, that has everything to do with who we are as a people, both as queer and trans people and as Korean people.

 

I think about the ways that we find each other as queer and trans people, the way that we find each other as queer and trans people of color—as queer and trans Koreans. The ways that we are often raised outside of our queer and trans communities and culture and language and history, but how we find our ways to each other and teach, create and grow our culture together. And I think about how this mirrors many Korean adoptee’s journeys.

 

I think about the many queer and trans Koreans that I’ve known who did not live on the coasts or in big cities and how we were able to find each other and stay connected, even in the face of incredible isolation—we still held on to each other.

 

“Family acceptance” is not just about our biological or immediate families, it is also about “family” in the ways that queer folks have reclaimed that term and made it our own—made it into a balm for our lives. I’m talking about the way queer and trans folks make up our own kind of family. We are kin.

 

It’s not enough to only talk about the homophobia and transphobia we face inside Korean community and family, because we also do damage to each other. We also reject each other, abuse each other, push each other away and fear one another. We also gloss over our differences in favor of convenience, denial or fear. And in many ways it can be even more painful because we are each others kin—we are each other’s queer and trans Korean kin. The stakes are so high and the fall is so great when things go awry—those canyons are so deep. And we often don’t have resources to turn to, as queer and trans people of color, and many of us suffer in silence for years, sometimes for entire lifetimes.

 

We have a lot of work to do within our community, our relationships and our selves.

 

We have to prioritize healing, both individually and collectively because they cannot be separated from each other. I would bet that most of us in this room have at one point or another struggled with our mental health. I would bet that most of us have experienced some type of abuse either from our families, within our relationships or even within our organizing. All of us have trauma and we all carry generational trauma in our bones, breath and cells.

 

How can we work towards any kind of liberation, if we can’t treat each other well? If we can’t build and rebuild trust when it is broken? If we can’t build healthy relationships? If we can’t let each other be human and make mistakes? If we can’t take accountability for harm we’ve caused? If we can’t support survivors in their healing and people who have harmed in their accountability? Most of us can’t even navigate conflict well, let alone violence, harm or abuse.

 

How can we ask other people to treat queer and trans Koreans well, if we can’t even treat ourselves and each other well?

 

What I want for us is healing and transformation. I want us to fight with everything we have to invest in building the skills and commitment we need to be able to face ourselves and each other—and to do it lovingly. To be able to speak our truths and tell our stories and our secrets without fear of losing each other. I want us to be able to risk being vulnerable again and again because you cannot build trust without vulnerability, and true love cannot exist without trust. I want us to call on our queer super powers of desire.

 

As queer people, we know the power of desire and we know how political desire is. And I’m not just talking about who you sleep with, I’m talking about desire in a much more expansive way. I’m talking about desire as that which pulls us towards liberation and that which pulls us towards aliveness. I am talking about that hunger that won’t let us sleep and makes us ache for something more, something true.

 

I want us to learn to desire the true, the messy, the complicated—the human. I want us to desire each other as queer and trans Koreans. I want us to desire queer Korean family and community. I want us to desire queer Korean love.

 

I think about what it means for those of us who continue to show up for this thing that we call “queer Korean community.” Even through our heartbreak and disappointments, even through our hesitations and fear. This is the kind of love and desire that I want us to continue to practice. This is the kind of hope that I want us to live into and pass on to the next generation of queer and trans Koreans who will struggle to find their place and wonder if they belong. Let us be able to meet their longing and fears with our longing and love, so that we may be able to embrace them and all of who they are with all of who we are, whispering, “Yes. Yes, you belong.”

 

 

 

 

 

 

 

Forced Intimacy: An Ableist Norm

Photo of my wheelchair in a dark room, silhouetted against a doorway, with a large shirt outlined in lights hanging against a dark wall.

“Forced Intimacy” is a term I have been using for years to refer to the common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world. This often takes the form of being expected to share (very) personal information with able bodied people to get basic access, but it also includes forced physical intimacy, especially for those of us who need physical help that often requires touching of our bodies. Forced intimacy can also include the ways that disabled people have to build and sustain emotional intimacy and relationships with someone in order to get access—to get safe, appropriate and good access.

 

I have experienced forced intimacy my entire life as a disabled child, youth and adult. I am always expected to do the work of opening myself up for others’ benefit, education, curiosity or benevolent oppression.

 

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable—whether we want to or not—about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

 

Forced intimacy is the opposite of access intimacy. It feels exploitative, exhausting and at times violating. Because I am physically disabled and use a manual wheelchair, I often experience forced intimacy when able bodied people push my wheelchair without my consent or when I am in situations where I have to be pushed by people I do not feel safe with, know or who are actively harassing me while pushing me. This often happens when I am traveling and have to rely on strangers for my access needs. I cannot count the number of times a strange man has pushed my wheelchair in the airport, while saying offensive and gross comments to me. These are the moments where disability, race, gender, immigration, class, age and sexuality collide together at once, indistinguishable from one another.

 

Another example of forced intimacy is when I am somewhere and need an arm to lean on while walking, as I often do, and I have to be physically close to and touch someone I do not want to. This happened much more when I was growing up as a disabled child and youth, before I had more say over my life and the people in it. Forced intimacy is also my entire experience in the medical industrial complex with doctors, nurses, brace makers, physical therapists and practitioners, none of which I ever consented to. It is also the many moments in my daily adult life when I have to share more information than needed to get access for events I would like to attend from folks, including “comrades,” who do not post any accessibility information on their event pages or flyers, but have an “accessibility needs” section on their Google forms. Tip: if you don’t provide any accessibility information about your event, then I cannot assess what my access needs will be. Am I supposed to list out every single access need I might ever possibly have, simply because of your ignorance?

 

Even in writing this essay, I am pushing back against the ableist notion that disabled people should just be grateful for whatever we get—whatever crumbs are thrown our way. Well, at least they even had an “accessibility needs” section on their form. And most importantly, I am pushing back against the forced intimacy and emotional labor I am supposed to constantly be engaged in so people won’t be “mad” at me, because as disabled people know all too well, able bodied people will not help you with your access unless they “like” you. This is a very real and dangerous caged reality that I and many other disabled people live in and it is one of the main reasons why forced intimacy exists.

 

Able bodied people treat access as a logistical interaction, rather than a human interaction. People I don’t know or who have never even had a conversation with me about disability casually expect to be my “access person,” without realizing that there is significant trust and competency that must be built. People assume that I will accept any access—again, any crumbs—thrown my way and of course that I should be ever-grateful for it. They don’t realize that consent exists on both ends. Sure, I know how to survive and get by with ableist access, that is a skill I will never lose as long as I am living in an ableist world; but I am also working for a world where disabled people get to be human and have consent over our bodies, minds and intimacy.

 

The contradiction of having to survive in the oppressive world you are trying to change is always complicated and dehumanizing.

 

One of the reasons that forced intimacy has been so prominent in my life is because there is an inherent intimacy to access—or at least, in my experience, to my access. When someone is helping me with access, I am vulnerable; I am interdependent with them, even if they don’t realize it. There is a magnificent vulnerability to access and to disability that is powerful and potentially transformative, if we would only tap into it. Sadly, in an ableist world, access and disability get stripped of their transformative powers and instead get distorted into “dependent,” “burden” and “tragic.” Forced intimacy is a byproduct of this and functions as a constant oppressive reminder of domination and control.

 

Though I have written here about forced intimacy as it relates to disability and access, it is in no way relegated only to ableism. I have experienced forced intimacy as it relates to other forms of oppression as well, and it manifests itself in all kinds of different ways. It has been a constant part of my life and my experience as a queer disabled korean transracial and transnational adoptee woman survivor. The forced intimacy of transracial and transnational adoption, for example, is a never-ending black hole for so many of us.

 

I cannot account here all of the many ways that forced intimacy has so fundamentally impacted and shaped me, that is for another piece of writing. I ache for the day when that will no longer be the case, especially for future generations of disabled children.

 

 

Medical Industrial Complex Visual

The following is a visual* of the Medical Industrial Complex (MIC) and is offered as a tool for our work for collective liberation. It was created so people could begin to get a sense of what the MIC is and all it encompasses. I have found that many people understand the general concept of the MIC, but don’t always know what it actually is beyond hospitals. The MIC cuts across all of our work and continues to be a major site where ableism is manufactured, perpetuated and fed. Any of our work to challenge and transform the MIC and its influences must have a sharp analysis of and and understand the history of ableism. For example, when fighting for healthcare, let us remember that we cannot simply fight for the right to receive care, but also the right to refuse care.

This is an evolving visual that will continue to be updated. At the bottom of this post, is a non-visual breakdown in outline form. This is not an exhaustive listing of every single part of the MIC, but rather an overview, offering examples of the many sites, sectors, professions, fields and institutions that make up the medical industrial complex. There are many more we could add. For example, there could be a whole other section dedicated to animals, especially the ones that are part of our food source, and all the genetic engineering, drugs, hormones, supplies and services that they receive. It is important to remember that the impacts of the MIC ripple out and are felt past what is listed here.

The Medical Industrial Complex is an enormous system with tentacles that reach beyond simply doctors, nurses, clinics, and hospitals. It is a system about profit, first and foremost, rather than “health,” wellbeing and care. Its roots run deep and its history and present are connected to everything including eugenics, capitalism, colonization, slavery, immigration, war, prisons, and reproductive oppression. It is not just a major piece of the history of ableism, but all systems of oppression.

Oppressed communities have had long and complicated histories with the MIC. From the continued targeting of disabled bodies as something to fix, to the experimentation on black bodies, to the pathologized treatment of and violent attempts to cure queer and trans communities. From the humiliating, lacking or flat-out denial of services to poor communities, to forced sterilization and dangerous contraceptives trafficked to young women of color. From the forced medicalization used in prisons today, to the days when the mental institutions used to be the jails, and the ways that “criminal” and “mentally disabled” are still used interchangeably. From the lack of culturally competent services, to the demonization and erasing of indigenous healing and practices. From the never-ending battle to control populations through controlling birth, birthing and those who give birth in this country, to the countless doctors and practitioners who have raped and sexually assaulted their patients and the survivors who never told a soul. From all the violence that was and is considered standard practice, to the gross abuses of power.

In flushing out what the MIC is, we are naming a system. We are calling attention to the systematic targeting of oppressed communities under the guise of care, health and safety. Like other oppressive systems, there are many individuals within the MIC that do good work. There are many people who went into the MIC intentionally to serve their communities because they want to change the system and provide reliable and safe care to those who need it. There are many people working inside the MIC who see first-hand its bureaucracy and hypocrisy. They help many of us find loopholes, shortcuts and life rafts through.

We are not saying that there are no useful or helpful things within the MIC. It has saved many of our lives or the lives of people we love. We are not anti healthcare or science, but are rather exposing the reality that many of us are dependent on the MIC while we are simultaneously trying to change it and ultimately build alternatives to it. Many of us don’t want to have to turn to the MIC, yet have few other viable options. And still many of us are fighting for access to current (or better) services within the MIC. There are no easy answers and the contradictions we are living in are often painful and unjust. Similar to our work to resist and challenge capitalism or to create alternatives to the police and prisons, resisting and challenging the MIC is rife with complexity and there is so much we need that we don’t have yet.

We are asking, why we have so few options when it comes to our healthcare needs? And why insurance and pharmaceutical companies get to call the shots on the kind of care we receive—or don’t? Why don’t we talk more about the ways that forced medicalization has become part of our prison system? Or how non-western and alternative healing practices are often no less ableist than western medical practices? We are asking, what could “health,” “wellness,” “care,” “accessibility” and “sustainability” look like in practice, outside of theory? We are revealing where and how the MIC is already in our lives in ways we might not have thought of before. We are urging us all to connect the MIC to our political work, because healing, wellness, care, “health” and disability are part of whatever liberatory work we are engaged in.

This offers us tremendous opportunities for coalition and cross-movement work because we all have a shared stake in our individual and collective wellness and healing. If anything, the damage the MIC has inflicted on our planet should be enough for us all to dream and invest in building alternatives. We have so much shared ground when it comes to being able to answer the ever-present question, “What could true wellness and care look like for our communities?”

 

[The image shows a visual layout of the Medical Industrial Complex, which is written at the top in large letters. Just under it, there is a thin, long box that contains the words: Profit, Power, Control, Exploitation, Ableism, Oppression, Violence, Trauma. There are four main quadrants, each in a different color with large matching colored arrows connecting the outer broad categories to inner underlying motives: “Science and Medicine” is connected to “Eugenics;” “Access” to “Charity and Ableism;” “Health” to “Desirability;” and “Safety” to “Population Control.” Subcategories and main categories within each quadrant, are listed in large and small boxes that are all connected to each other with lines, forming a web-like effect, filling the entire page. (There is a complete listing of all the boxes by quadrants below.) In the bottom right corner there is small grey lettering that reads, “Posted on leavingevidence.wordpress.comVersion: 2015.1]

MIC Visual Version 2015.1 Fullscreen & Download

 

In this visual, there are 4 distinct sections that make up the underlying core motivations of the MIC: Eugenics, Charity and Ableism, Population Control and Desirability. These are part of what allow the MIC to continue to be profitable. Not only do they anchor each of the 4 sections shown here, but they permeate through the entire MIC. For example, Eugenics anchors Science and Medicine, but is absolutely a part of how we have been taught to understand Safety and is a cornerstone of Population Control. Desirability anchors Health , which includes everything from the Alternative and Natural Medicines Industry to Cosmetic Medical Procedures. Charity and Ableism anchor Access and reminds us how access is still understood as charity, rather than justice. Population Control is often done in the name of Safety, but is most certainly a part of Science and Medicine as well.

Since nothing listed is mutually exclusive and many of these boxes overlap, there are connections that can be made throughout the entire visual. For example, the Mental Health Industry boxes are intentionally positioned to slide right down into the Prison Industrial Complex, especially given that the largest mental institution in the U.S. is part of a county jail in LA. The same is true for the placement of Bio-colonialism and Cosmetic Medical Procedures since they both so aptly reflect the motivations of Eugenics and Desirability, respectively. Non-profits were included directly next to Charity and Eugenics because of the ways that they have helped to framed how we understand things such as “cure” and “rescue,” and dutifully fundraised millions of dollars in the process.

What would it mean to not have to be afraid of going to the doctor? To be able to trust that the care and treatments you are receiving will not only take care of your body, but the planet and future generations as well?

I am inspired by the possibilities that can be grown out of the rich fertile ground where disability justice and healing justice meet and overlap. I ache for more healers that don’t continue to perpetuate ableist notions of how bodies should be (or strive to be) and for disabled folks who don’t have to only know “healing” as a violent word because of our histories of forced healing, cures and fixing. I get excited about practitioners who have accessible spaces and practices that can hold all kinds of bodies and minds; and collective access and care that allows more and more disabled people to be less and less bound to the state.

I hope this visual continues to evolve and serves as a useful tool for different kinds of liberatory work and I look forward to creating more versions. I hope this is the beginning of all kinds of different tools (i.e. more visuals, writings, breakdowns, art and education) for understanding the MIC because there is so much work to be done.

 

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*There are many important people who helped create this visual from its inception 6 years ago, to the huge mass of colorful webs it is today. The original version of this visual was created in collaboration with Cara Page and Patty Berne for the January 2009 workshop, “Re-envisioning the Revolutionary Body: Disability, Race, Queerness and the Possibility of Cross-movement Building.” Deep thanks go to both of them for their ongoing work for healing justice and disability justice.

Over the last 6 years, I continued to rework the visual by adding more information, re-organizing the layout, and re-formatting it. I played around with many different breakdowns before finally settling on this 4-part framework of Eugenics, Charity and Ableism, Population Control, and Desirability. I asked for (and got) a ton of feedback on it from great individuals across the U.S. and Canada who attended workshops and talks I gave. Friends and comrades also gave feedback and much needed support on formatting, arranging and content.

I would especially like to thank two fellow disability justice activists who have been pivotal in thinking through the content of the MIC with me in the last 3 years. This visual would not exist as it is today without them and they have given so much of their time and heart to both the larger framing, as well as the minutia. They have asked to remain anonymous, due to safety concerns of being public about their disabilities, so I will just say, “thank you, thank you, thank you.”

 

The Medical Industrial Complex Visual Outline

• Profit, Power, Control, Exploitation, Ableism, Oppression, Violence, Trauma
• Science and Medicine  —  Eugenics
  • State/Private Hospitals, Clinics, Health Centers
    • Medical Practices, Examinations, Surgeries, Procedures, Equipment, Suppliers
  • Medical Schools
    • Medical Curriculum, Studies, Research, Experimentation
    • Doctors, Nurses, Practitioners
  • Pharmaceutical Companies
    • Multi-National Corporations, Distributors
  • Bio-colonialism
    • Scientists, Researchers, Genetic Testing, Vaccines
    • Reproductive Control, Sterilization, Contraceptives
    • Assisted Reproductive Biogenetic Technologies
• Access  —  Charity and Ableism
  • Assistive Devices, Equipment and Services
    • Prosthetics, Braces
    • Wheelchairs, Canes, Walkers, Ventilators, Vans, Lifts, Needles
    • Physical Therapy
  • Non-Profits
    • Service Provision
    • Advocacy, Fundraising
  • State Disability Services and Programs
    • Department of Mental Health, Case Workers, “Doctor’s Note”
    • State Provided Care (Nurses, Personal Attendants)
    • Federal, Regional, State, County, City
• Safety — Population Control
  • Prison Industrial Complex
    • Prison Psychiatric Wards, Forced Medicalization and Institutionalization
    • Healthcare Provision and Facilities for Prisoners
    • Lethal Injections
  • Drug and Addiction Facilities and Programs
    • Drug testing
  • Assisted Living
    • Group Homes, Nursing Homes
    • Elderly, Sick and Disabled
• Health —  Desirability
  • Mental Health Industry
    • Public/Private Institutions and Services
    • Therapy, Psychology
    • Psychiatry
  • Non-western and Alternative Healing
    • Schools, Research, Practices, Beliefs
    • Practitioners, Leaders
    • Faith-based and Forced Healing
  • Alternative and Natural Medicines Industry
    • Multinational Corporations, Distributors
  • Cosmetic Medical Procedures
    • Surgeries, Supplies, Drugs

 

 

On Claiming My Movement: Disability and Reproductive Justice

(*From PEP’s Winter 2008 Newsletter)

It is not a coincidence that I ended up working in a movement that is fundamentally rooted in the idea that certain bodies are valuable and others are not; in a movement that is so connected with the world of healthcare and medicine–the reproductive justice movement.  Reproductive justice and disability are connected on a deeply fundamental level.  Disabled people, issues, history, politics and analysis allow us to see parts of reproductive justice that we would otherwise never know.  After all, how can you talk about bodies without talking about disability?  How can you ignore the fact that disabled women are forcibly sterilized or given dangerous contraceptives to control their menstrual cycles for the convenience of their caretakers and institutions?  How can we learn to fight for not only the right to receive care, but also the right to refuse it?  How can we forget that female bodies were historically coded as “disabled” because they were “different” and had “different abilities” than male bodies?  Or that ableism is so easily and successfully used as a mechanism of reproductive oppression?

As women of color, people with disabilities, LGBTI and queer people, and survivors of violence and trauma, the struggle to claim our bodies for ourselves–in all of our bodies’ curious, strange, beautiful and glorious ways–cannot be separated from reproductive justice.  As communities whose bodies have been owned, experimented on, institutionalized, hospitalized, medicalized, colonized, imprisoned, enslaved and controlled, we have been told that our bodies are wrong, perverse, shameful, bad, and most importantly; that our bodies are not ours; that they belong to the state, our parents, husbands, partners, doctors, children, families, communities, god(s), and so on.

I grew out of a very strong feminist, activist, close-knit community working to end violence against women and children.  Early on, I learned about sexism, racism, economic injustice and homophobia; that there was no hierarchy of oppression; that systems of oppression were connected to each other, intersected and overlapped.  Despite such a strong framework, no one ever taught me to think of disability in the same way and connect it to being Asian American, a woman, young or queer.  No one ever taught me that being disabled was a powerful way to move through the world or that disabled communities had rich and vibrant cultures of their own.

I was taught to claim my body as a girl, female, and woman, but not as a disabled person.  When it came to my disability, my parents looked to doctors, healthcare providers, medical experts and brace makers.  I was not the expert on my body; they were.  It never occurred to anyone that the ability to claim my body as a girl was dependent on my ability to claim my disabled body as a disabled girl.  No one ever realized that my experiences with the medical industrial complex as a disabled child would ultimately discourage me from seeking medical services (reproductive or not) in the future – or that standing in my underwear in front of male doctors as they studied me was any different than standing in my underwear in front of any old men as they studied me.

Growing up disabled, my body profoundly affected how I viewed the world and in turn, how the world viewed me.  School became a site where the politics of beauty, disability, race, sexuality and gender collided.  I never saw disabled women (let alone disabled women of color) in powerful roles, being desired or desiring, raising families or claiming their disability as a political identity, rather than an individual flaw or tragedy.

One of my earliest memories of consciously claiming my body for myself was deciding not to wear my brace any more.  For years I wore a brace on my right leg; I had to get them re-made or re-fitted almost every year as I grew out of them.  I had some that went from my foot to my knee and some that went all the way up to my hip.

For a long time I did not question my brace.  It was just the way things were, like stairs, people staring at me when I walked, or feeling ashamed of my disability.  Among many things, my braces were hot (often made of plastic and or fiberglass), and  in the Virgin Islands Caribbean weather, they itched, pinched my skin, and gave me painful blisters which I would try to prevent by wearing more socks or padding.  Like my parents, I had come to believe that I “needed” to wear my brace.  But something began to change as I entered middle school. I began to ask questions: why should I have to wear something so painful everyday that is supposed to “help” me?  If they can send a man to the moon, then surely they can make a comfortable and useful brace for my leg?  In the beginning I had small acts of resistance: the daily morning fight about putting my brace on or bringing a change of shoes and changing out of it once I was at school–this went on for years.  Finally I was “allowed” to not wear my brace some days, and it was not until I was in college that I was able to choose not to wear my brace everyday.

For me, my brace represented the medical establishment’s grubby little hands on my body, forcing me to adhere to a standardized, able bodied norm of how bodies are supposed to be, look, act and move.  When I wore it, I could hear horrible brace maker’s voices in my head, “that’s an ugly walk,” “walk down the hallway again and this time, try and make it prettier,” “this brace will make you have a normal walk,” or “don’t worry, you’ll be able to hide the brace under your clothes–boys won’t even know it’s there.”  It represented years of someone else deciding what was best for my body and the invasion (physical and mental) of my body at a young age by people who never asked me what I thought about having multiple surgeries done at the same time; how I felt being told that my body was “wrong” and “something to fix” over and over again. All that time, I never knew that there was a whole movement out there of disabled people demanding justice and a right to our existence.

The ownership and entitlement of the medical industrial complex of my disabled body is, in my mind, no worse than the ownership and entitlement of the system of white supremacy of my body of color; or the system of male supremacy of my female body.  In fact, they are so connected and mutually interdependent that they are impossible to separate.  Claiming my body has been and continues to be a pivotal process in my own life.  Knowing and learning to understand my disabled body as powerful, beautiful, valuable and desirable has been central to my activism in the reproductive justice movement.  For me, reproductive justice will always include a radical analysis of disability and ableist supremacy because they are part of each other and they are a part of me.