“Disability Justice” is Simply Another Term for Love

 

This was the opening keynote speech at the 2018 Disability Intersectionality Summit, in Cambridge, Massachusetts on Oct 13, 2018. The official video recording of this keynote can be found here. 

 

[image of a pile of fall maple-like leaves in yellows and browns on the ground with a large green leaf on top.]

Good morning everyone. Thank you so much for having me. Thank you to the organizers of this—I know it takes an incredible amount of work to put something like this on. And it is often the kind of work that happens behind the scenes and goes unnoticed. Thank you so much for all you’ve done. And I want to extend special thanks to Sandy, who’s been in contact with me—thank you.

 

In addition to the beautiful acknowledgement of the land and indigenous people we had today, I also want to extend gratitude to the people who clean and care for this building. The people who mop and vacuum the floors, clean the toilets, take out the trash and maintain the grounds. The people who built this building and all those who have been displaced from where we are as well.

 

When I started out doing disability justice work, before it was even called “disability justice,” these spaces were so rare. I want people to not take this space for granted because so many disabled people would kill to be here and so many people don’t have access to this type of space. And I know that for a lot of us, this I our political work, this is our life and we seek out these spaces, we create them. I want us to keep remembering that so many folks will never have access to these spaces and how do we keep reminding our selves of who is not in the room? All the different people who are not here.

 

And I know there are brilliant workshops scheduled for today. Workshops that will break down the connections between disability and prisons and immigration and race and gender and sexuality and dance and activism and so much more. I know the analysis will be brilliant and much needed.

 

And I found as I was typing away at my computer, the things that were coming up were not only analysis, but also story and feeling; longing and love for all of you and how precious it is to be here together, even just for a day. To be in a space where we can center disabled people of color, disabled queer and trans folks. To be in a cross-disability space and how rare that is too. Analysis, of course, but heart and breathe and body, too.

 

Because I want to express gratitude for this space—a space to hold disability and intersectionality, a disability justice space—because for decades of my life I didn’t have any spaces like this. I didn’t even have conversations that could hold this. I didn’t have people in my life who I could talk to about these things. And it would have meant the world to me to have a space to talk about how disability, race, gender, adoption, survivorship, violence, cure, queerness and so much more connected and collided in my life, as a disabled child who had no one to talk to about my own lived experience. Who had no one who could support me as I navigated the medical industrial complex on my own as a disabled girl korean transracial and transnational adoptee, surrounded by white abled adults and doctors, nurses and practitioners who often didn’t talk to me about what was happening, except to tell me what a “good patient” I was.

 

As I was preparing my remarks for today, I realized that there was a deep sadness that kept bubbling up in me. A deep longing and aching for what I wish I had had and grief for all I never had. A grief for all the other disabled kids and youth out there who are also so very isolated and the disabled people who would give anything to be able to have this kind of space—many of whom don’t know that these kinds of spaces even exist. Who are surviving, isolated in their families or communities and don’t know that we are gathering here today—that people have been gathering like this.

 

Because that was definitely me. I didn’t know. I was so isolated. I was so alone. And I know that so many of us can relate to that.

 

Because that is often what happens: when we start to connect with our dreams and our visions and our longings, we often tap into our grief and our sadness; our heartbreak and sorrow for what we never had. For the ways we wished our lives could have been. For the spaces we wish existed. For all that still is not.

 

I wish someone had been there to talk about disability in a complex and nuanced way—to be able to hold (what we now call) disability justice. I wish I had known that there was so much more out there, especially during the hardest times; especially when I was inside the medical industrial complex experiencing so much violence. Especially on those mornings when my blisters were still raw from the days and weeks before, but I was forced to put on my painful brace. A brace that I didn’t need to be whole, but others needed me to wear so that I could be “the right kind of disabled child.” One who they needed to be seen as trying to be as abled as possible, trying to fix myself and my walk and my body to be something other than I was. Something other than I am.

 

Someone who now stands here after all the surgeries and the braces and the physical therapy and the forced healing, just as disabled as I was then. Because the cure didn’t work—as I knew it wouldn’t. It didn’t take, even though they really tried.

 

I think our stories are powerful and magnificent; and I hope you all will be able to share some of your stories here with each other because our lives so clearly encapsulate why we so desperately need these kinds of spaces. Our lives are illustrations of disability and intersectionality and there is a wealth of knowledge there for us to learn from and use.

 

And for so many of us, if we don’t tell our stories, who will? If we can’t share our stories with each other, whom can we share them with?

 

I often think about all the things needed to hold my story, just to name a few: someone who understands disability, ableism, abled supremacy; the medical industrial complex, histories and notions of cure, ugliness and the myth of beauty; race, white supremacy, orientalism, adoption, transracial adoption, transnational adoption, the commodification and ownership of children, immigration, forced migration; korea, diaspora, US imperialism, war, borders; the Caribbean, colonization, the US South, anti-black racism, slavery and the US slave trade system; misogyny, patriarchy, sexism, gender, domestic and sexual violence, child sexual abuse; feminism, queerness, queer people of color; rural lands, islands, rural communities. And how all of these intersect with each other.

 

I wonder what the things needed to hold your stories are? I wonder how many pieces of your story weren’t told because there wasn’t anyone who could understand and hold them? I wonder how many parts of all of our stories that we still have never told anyone because of this?

 

My story is just as much a story about korean adoptees and korea, as it is a story about disability, as it is a story about feminism and queerness and growing up on a rural island outside of the U.S. mainland.

 

A part of this symposium is not only revealing the connections of different systems of oppression, trauma and violence with disability; but also the connection of all of these things within our selves and our lives and refusing to cut ourselves and our stories up. Refusing to tell partial stories for other people’s convenience. Refusing to separate our work for the comfort of others.

 

Because this space should not be rare—this should be the norm. It should not be that we have to leave mainstream disability spaces (or even alternative disability spaces) to be able to be our full selves and have whole conversations—about our own lives. It shouldn’t be that we have to leave racial justice and people of color spaces to be able to fully name and examine how abled supremacy and white supremacy work hand-in-hand to oppress and target disabled people of color and all people of color at large. It shouldn’t be that we have to leave queer and feminist spaces to be able to talk about how gender oppression and ableism have deeply intertwined roots. And why it is just as important to abolish the gender binary, as it is to abolish abled supremacy.

 

It shouldn’t be that we have to go to the margins of the margins of the margins of the margins. And don’t get me wrong; I love living out there. There are amazing things and people out there. And it shouldn’t be that that’s the only place where we can be whole.

 

It shouldn’t be that we have to hold our tongues or risk backlash or be met with empty silence just to be able to talk about our own realities and the realities of our communities. Just to be able to talk about our own lives.

 

This is also a part of the isolation we face everyday.

 

In all of our sharp intersectional analysis, we must locate ourselves, our stories and where our lives live in all of their complexities: privilege, oppression, how we have been harmed and how we have been complicit in harm. None of here are innocent.

 

I think of this as a kind of access—liberatory access, that is. Because it is not enough to just make sure that we can get into the room or that the conversation is translated or that we can access the materials. And it is not enough for us to simply get to share what’s important to us (though I know that many times we don’t even get to share that), if no one knows how to hold what we are sharing; if no one knows how to understand and fully engage with what we are sharing. How many times have we been in rooms and shared our truths, only to be met with backlash, avoidance or blank faces and awkward silence because people have not done their own work to educate themselves to be able to meet us? Whether it is in white spaces, abled spaces, hearing spaces, neurotypical spaces? How many times has the conversation continued on as if we never shared at all?

 

I don’t just want technical and logistical access. I don’t just want inclusion, I want liberatory access and access intimacy. I want us to not only be able to be part of spaces, but for us to be able to fully engage in spaces. I don’t just want us to get a seat at someone else’s table, I want us to be able to build something more magnificent than a table, togetherwith our accomplices. I want us to be able to be understood and to be able to take part in principled struggle together—to be able to be human together. Not just placated or politely listened to.

 

I want this for us and I also want this from us. Because the moment we acknowledge intersectionality, it also means we must acknowledge and face ourselves. Because even within this room and out there on the live stream, there are many, many differences between us and between those that aren’t able to join us here. Some of us are immigrants, some of us are not; some of us are survivors of sexual violence, some of us are not. Some of us benefit from light skinned privilege and/or white passing privilege, some of us do not. Some of us benefit from anti-black racism, or hearing supremacy or a world built for cis people. I want us to do our work so that when people whose oppression benefits us, share their truths or their questions, we can meet them in those conversations. We can join them in principled struggle in conversations about activism, strategy, action, accountability and justice.

 

These kind of spaces (like the one we’re in today) often feel like tiny oases  in the middle of a desert, and that is real. And I would also like to offer that they can also serve as a microcosm of the world in which we currently exist and to think of them as any “safer” than anywhere else is an illusion. I would like to offer that multiple truths can exist and that one does not negate the other. This space can be both a welcomed respite from the unrelenting storm we are usually in and—both/and—it can also be a storm as well.

 

When I say “liberatory access,” I mean access that is more than simply having a ramp or being scent free or providing captions. Access for the sake of access or inclusion is not necessarily liberatory, but access done in the service of love, justice, connection and community is liberatory and has the power to transform. I want us to think beyond just knowing the “right things to say” and be able to truly engage. I want us to not only make sure things are accessible, but also work to transform the conditions that created that inaccessibility in the first place. To not only meet the immediate needs of access—whether that is access to spaces, or access to education and resources, or access to dignity and agency—but also work to make sure that the inaccessibility doesn’t happen again.

 

(This is also at the crux of transformative justice work I’m a part of: you work to not only address the harm and the immediate needs the harm created, but you also make sure that the harm does not happen again and that you are working to transform the conditions that allowed the harm to happen in the first place.)

 

Because, as we integrate disability justice into our political work more and more—as we grow it and cultivate it—we must also be mindful that it is not an easy fix, and if anything, disability justice will require us to work harder and dig deeper. Disability justice should not only be about our analysis and political work, but it should also encompass how we do our work and how we treat each other, as fellow disabled people with multiple oppressed identities and experiences. Because I know I am not alone when I say that some of my deepest wounds have come from other disabled people. I know I am not alone when I say that sometimes we can treat each other in more painful ways than those outside of our community have treated us.

 

As we work to change the world, we must also work to change ourselves. And we must support each other in that change. Ableism and other systems of oppression and violence have left their mark on us. We can’t, on the one hand, understand how devastating capitalism, misogyny and criminalization are and then on the other hand, pretend as if they don’t affect how we treat each other and ourselves. Because most of us treat ourselves in ways that we would never treat anyone else. Most of us are in an abusive relationship with ourselves and that helps to lay the groundwork for abuse in the world.

 

Because no matter how on-point our analysis is, if we can’t treat each other well, our work will not get far. Because the systems we are up against will require collective work—if we could have changed them on our own, we would have already done it—and collective work requires that we are in relationship with each other in some way shape or form.

 

It is always so amazing to me that disabled people, who are so incredibly isolated and exiled, will also isolate and exile each other. And I know most of us have been on both sides of this.

 

Now, I am not saying that we all have to be besties with each other or that people don’t need to be accountable for their actions and/or harm they have done—they absolutely do. What I’m saying is that disability justice requires us to understand intersectionality, and intersectionality requires that we learn how to hold and value difference and contradictions. (e.g. you can be both oppressed and privileged by the same identity. You can have survived harm and do harm. These are contradictions that we all hold. I’m sure that all of us have been harmed in this room and all of us have either harmed or participated in harm or looked away from harm in some way shape or form. Whether it’s via our privilege or whatever else it may be.) What I’m saying is that it is not only “those people out there” who need to change, but it is “us in here” as well. What I am saying is that isolation, exclusion and erasure has been destructively wielded against us and our communities, so why would we want to wield them against each other?

 

Because I would argue that “disability justice” is simply another term for love. And so is “solidarity,” “access,” and “access intimacy.” I would argue that our work for liberation is simply a practice of love—one of the deepest and most profound there is. And the creation of this space is an act of love.

 

And if we can’t love each other and ourselves, then what good is any of our work to get free? If we can’t reach out to break isolation and the walls we’ve put up between each other, as disabled people, then we will have already lost before we’ve won any political battle. What good is it if we can wage amazing campaigns, if we all end up hating each other in the end? If we can’t practice addressing the hard things between each other, then how will we ever have a fighting chance to address the hard things in this world that keep our peoples locked up and locked out?

 

We have to work to transform the world, but we can only do that effectively if we can work to transform ourselves and our relationships with each other at the same time. Because our work depends on us and our relationships with each other. And if anyone is worth it, it is us and the generations of disabled children and people coming after us. We have a responsibility to leave them a legacy worth fighting for. To leave them powerful stories of not only how we were able to shut down prisons and I.C.E., but also how we were able to come through harm together, for the better. How we were able to make amends with our disabled kin and heal together. One of the greatest ways to resist abled supremacy is by loving each other. How we were able to practice transformative love together in the face of fear, isolation and heartbreak. And I know that there’s a lot of heartbreak.

 

This is how we practice interdependence. This is how we practice trust and belonging and hope. This is how we practice disability justice in its most powerful and magnificent potential.

 

So, I hope you all have a wonderful symposium and thank you so much for having me.

 

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.

 

 

Access Intimacy, Interdependence and Disability Justice

My remarks from the 2017 Paul K. Longmore Lecture on Disability Studies at San Francisco State University delivered on April 11, 2017.

 

To watch and listen to the video of my talk, click here. (Thank you to the Longmore Institute on Disability for the video!)

 

[Photo of a fall leaf with reds, oranges and yellows being held up against a background of water and land in the far off distance under a cloudy sky. Photo by Mia Mingus.]

 

Good evening everyone and thank you so much for having me. Thank you for being flexible as I recovered from being very, very sick. It’s an honor to be here. Thank you to the people whose work has made this event possible (twice!) and for your work to make this event accessible—work that is so vital and, sadly rare, when it comes to social justice work.

I want to send a thank you out to everyone here and around the globe who are resisting—in big and small ways—the current administration, greed, toxic masculinity, white supremacy, fascism, colonization, environmental destruction, xenophobia, islamaphobia, and rape culture. Thank you. Thank you. Thank you.

I want to extend gratitude to not only the organizers of this event, but also to the people who work and care for these buildings, rooms and grounds. The people who built this building, dispose of the trash, and clean the floors and toilets. The people who work for this institution, but can’t afford to attend it or live near it.

Let us also acknowledge that we are always on native land (and this is no exception) and that communities and lands around the globe are being exploited so that we may sit here in an air-conditioned room together. Let us remember how interdependent our lives are, not only when it is convenient, but every single day.

 

I want to say unequivocally that disabled people are everywhere. We are one of the largest oppressed groups on the planet. We are part of political movements, even if you don’t know or don’t acknowledge that we are. No matter what community you’re working with, you are working with disabled people. (And given how violent and polluted our world is, those numbers will only continue to grow.)

Disability and ableism are not secondary issues, though they continually get treated as such. If you are a disabled person out there, I want you to know that our experiences as disabled people matter. Our experiences as disabled queer people of color matter—even if queer, people of color, and queer people of color communities don’t bother to include us in their events, social gatherings, strategies, movements, analysis and communities. We matter and our stories and experiences matter. It means something to be disabled. Never forget that.

Understanding disability and ableism is the work of every revolutionary, activist and organizer—of every human being. Disability is one of the most organic and human experiences on the planet. We are all aging, we are all living in polluted and toxic conditions and the level of violence currently in the world should be enough for all of us to care more about disability and ableism.

 

Access Intimacy

I would like to focus my remarks tonight on access intimacy, interdependence and disability justice. I want to talk about these because I think they are—especially access intimacy—an important example of how we can reframe our understandings of disability to help us in our fight for liberation.

For those of you less familiar with Access Intimacy, it is a term I began using and coined in the spring of 2011 in my essay, “Access Intimacy: The Missing Link.” And I want to be clear, I didn’t invent access intimacy, I simply gave a name to something that was happening in my life and I hope it’s useful to others. Just because you name something doesn’t mean you invented it.

From “Access Intimacy: The Missing Link:”

“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 unto itself…

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.”

 

Tonight I want to focus on access intimacy between disabled people and able bodied people because it has been the hardest for me to build. This is a huge part of my life because most of my access depends on able bodied people and because I don’t have paid or formal attendants, I am often relying on friends, coworkers and strangers for my access, as is the case for so many disabled folks.

For me, I understand Access Intimacy as something that can transform ordinary access into a tool for liberation, instead of merely reinforcing “inclusion” and “equality.” I am done with disability simply being “included” in able bodied people’s agendas and lives only when it’s convenient. I want us to tap into the transformative powers of disability, instead of only gaining access to the current system, or the burning house as the late Grace Lee Boggs would say, and doing nothing to change that system. We don’t simply want to join the ranks of the privileged, we want to challenge and dismantle those ranks and question why some people are consistently at the bottom.

Cultivating access intimacy is a way to directly challenge ableism and the relentless isolation that disabled people endure, especially disabled folks who are part of other oppressed communities. Access intimacy at once recognizes and understands the relational and human quality of access, while simultaneously deepening the relationships involved. It moves the work of access out of the realm of only logistics and into the realm of relationships and understanding disabled people as humans, not burdens. Disabled people’s liberation cannot be boiled down to logistics.

Access intimacy is interdependence in action. It is an acknowledgement that what is most important is not whether or not things are perfectly accessible, or whether or not there is ableism; but rather what the impact of inaccessibility and ableism is on disabled people and our lives. In my experience, when access intimacy is present, the most powerful part is having someone to navigate access and ableism with. It is knowing that someone else is with me in this mess. It is knowing that someone else is willing to be with me in the never-ending and ever-changing daily obstacle course that is navigating an inaccessible world. It is knowing that I will not be alone in the stunning silence, avoidance and denial of ableism by almost every able bodied person I have ever and will ever come in contact with. Access intimacy is knowing that I will not be alone in the stealth, insidious poison that is ableism.

The power of access intimacy is that it reorients our approach from one where disabled people are expected to squeeze into able bodied people’s world, and instead calls upon able bodied people to inhabit our world.

It challenges able bodied supremacy by valuing disability—not running from disability—but moving towards it. It asserts that there is value in disabled people’s lived experiences. In this way, it reframes both how and where solidarity can be practiced. Access intimacy is shared work by all people involved, it is no longer the familiar story of disabled people having to do all the work to build the conversations and piece together the relationship and trust that we know we need for access—that we know we need in order to survive. I know this has been the story of my life, especially with able bodied people of color and able bodied queer people of color.

 

Disabled people get told we must shrink ourselves and our desires to settle for living in the wake of an able bodied parade. And especially if we are part of other oppressed communities, we are expected to be grateful for whatever crumbs are thrown our way. In my life this has looked like a lifetime of political events by communities I am a part of that were not (and continue not to be) accessible—and where seemingly no one even pondered disability with no mention of it on any event information—or where access was done reluctantly or only for political show. It has looked like a lifetime of rich, passionate political conversations with people from my communities about everything under the sun except for disability and if disability was going to be talked about it was always me who had to bring it up. It has looked like friends from my communities inviting me to social gatherings and never once asking me or thinking about my access or differences in ability. It has looked like dates that were inaccessible and, in the worst cases, left me badly physically injured and bloody. It has looked like friendships that expect me to do all the work to educate them on disability and engage in conversations about disability and ableism. It has looked like a lifetime of supporting “my communities” in “their work” and them never showing up for anything related to disability.

It is easy to list these things off and analyze them, but it is harder to convey the way they have felt. It is harder to talk about how incredibly—sometimes unbelievably—painful these have felt when experienced. Queer people of color to-be-parents want to spend hours talking about how they will support their will-be children to explore their genders and sexualities outside of binaries, but when I ask them how they will support their child if they are or become disabled the conversation abruptly stops or I am told I am being “negative.” Or Asian, Korean or Korean adoptee communities don’t make their gatherings accessible and then I am asked, “why aren’t you more connected to those communities?” Or disabled communities who have no interest in talking about race, sexuality or gender and respond with hostility that you are being divisive when you explain that you cannot separate your disability from your other identities. Or the only access people you can find are white and there are “people of color only spaces” that you desperately need access to for your own survival as a woman of color adoptee. The ways that ableism and white supremacy work together so successfully to isolate disabled people of color continues to break my heart.

This is why access intimacy has been so important to me in my life. It has been an antidote to the pain and the extreme isolation that pound like crashing waves with no end. It has been a way to remember my magnificence and my dignity. It has been the tender balm and recognition of parts of me that most people would rather deny, avoid and pretend away.

And I want to be transparent, access intimacy is not easy to build. When it doesn’t happen magically and organically, it has been hard to create. It requires a lot of trust and faith and practice. And it has been lonely because not everyone is ready for it (or even a good fit for it) and it has taken discipline inside myself to not settle for crappy access when I don’t have to, which often means I have less access. And because we live in an able bodied society, most of the burden is still on disabled people (and will be for quite sometime) to grow it and introduce the concept to able bodied people in our lives. It is like anything else that transforms you, in that it is a thawing that will force you to inevitably question why you have gone so long without it and why it doesn’t exist in more places in your life, similar to the way that any kind of powerful alignment, love or joy does. It reminds me of the way that Audre Lorde talks about the erotic in her essay, “Uses of the Erotic”:

For once we begin to feel deeply all the aspects of our lives, we begin to demand from ourselves and from our life-pursuits that they feel in accordance with that joy which we know ourselves to be capable of.

 

Access intimacy is one of the main ways that I have been building interdependence in my life. I have been pushing myself to grow it and not just subsist on the little I have been able to find, most significantly with my partner, as is the case for many disabled folks. Engaging in building any kind of interdependence will always be a risk, for everyone involved; and the risk will always be greater for those who are more oppressed and have less access to privilege. In an ableist world where disabled people are understood as disposable, it can be especially hard to build interdependence with people you need in order to survive, but who don’t need you in order to survive. In an ableist context, interdependence will always get framed as “burden,” and disability will always get framed as “inferior.” To actively work to build something that is thought of as undeniably undesirable and to try and reframe it to others as liberatory, is no small task.

Especially as disabled people, we know what it means to live interdependent lives and it does not always feel revolutionary or enjoyable.

There will always be a difference of power between myself and able bodied people I am in relationship with. It will always be a choice for them to not have to engage in any work around disability or ableism. It will always be perfectly acceptable for them to never have to have conversations about disability or ableism, and certainly not any conversations that address their privilege, ignorance or question their ableist desires. They will never be expected to be in solidarity with disabled people and even if they are—even mildly or offensively—they will be applauded by the world for taking pity on us. The scales are already tipped and those of us who are on the sinking side know all-to-well what living in the shadows is like.

In my life, access intimacy continues to be a game-changer, a way to queer access into a tool we can use to get free. It has been a way to shift and queer how I and others understand disability and ableism. And because of the inherent interdependence of access intimacy—the “we” of access intimacy—it has transformed the kinds of conversations I am able to have with some of the able bodied people in my life. Access intimacy has helped me to orient my desires from a place of magnificence and moving towards the Ugly. It has required me to demand more from the people in my communities and settle less because I know things can be better. In short, it has sparked possibility inside of me that, growing up as a disabled child, I never had and never knew could exist. As a disabled child, I didn’t know that access could be anything other than the usual mixture of guilt, shame and isolation that always seemed so normal.

Access intimacy is critical to disability justice because there will never be any work with disabled people that does not include accessibility work. And it is important to note that access is often one of the biggest hurdles to doing work with disabled communities. Access is not some “optional way of life” for us—it is part of everything we do. It is part of everything I do. So, if we are working to transform the world for all of us, and not just some of us, access will be a huge part of this work. There is no liberation without disabled people.

 

Liberatory Access & Interdependence

We talk about the importance of making our movements and communities accessible and yes, that is important. We have to make our work and spaces more accessible. There is no way around it. Access is concrete resistance to the immense isolation that disabled people face everyday. But I don’t want us to just make things “accessible,” I want us to build a political container in which that access can take place in and be grounded in. Access for the sake of access is not necessarily libratory, but access for the sake of connection, justice, community, love and liberation is. We can use access as a tool to transform the broader conditions we live in, to transform the conditions that created that inaccessibility in the first place. Access can be a tool to challenge ableism, ablebodied supremacy, independence and exclusion. I believe we can do access in liberatory ways that aren’t just about inclusion, diversity and equality; but are rather, in service of justice, liberation and interdependence.

I have been calling this concept “Liberatory Access.” Liberatory access gets us closer to the world we want and ache for, rather than simply reinforcing the status quo. It lives in the now and the future. There is no liberatory access without access intimacy, and in fact, access intimacy is one of the main criteria for liberatory access. Liberatory access understands addressing inaccessibility and ableism as an opportunity for building deeper relationships with each other, realigning our selves with our values and what matters most to us, and challenging oppression.

Liberatory access calls upon us to create different values for accessibility than we have historically had. It demands that the responsibility for access shifts from being an individual responsibility to a collective responsibility. That access shifts from being silencing to freeing; from being isolating to connecting; from hidden and invisible to visible; from burdensome to valuable; from a resentful obligation to an opportunity; from shameful to powerful; from ridged to creative. It’s the “good” kind of access, the moments when we are pleasantly surprised and feel seen. It is a way of doing access that transforms both our “today” and our “tomorrow.” In this way, Liberatory access both resists against the world we don’t want and actively builds the world we do want.

Liberatory access requires a political container to live in and orient from and I believe that disability justice is that political container.

Access should be happening in service of our larger goals of building interdependence and embracing need, because this is such a deep part of challenging ableism and the myth of independence. The myth of independence is the idea that we can and should be able to do everything on our own and, of course, we know that that’s not true. Someone made the clothes you’re wearing now, your shoes, your car or the mass transit system you use; we don’t grow all our own food and spices.  We can’t pretend that what happens in this country doesn’t affect others, or that things like clean air and water don’t bound us all together. We are dependent on each other, period. The myth of independence reflects such a deep level of privilege, especially in this rugged individualistic capitalist society and produced the very idea that we could even mildly conceive of our lives or our accomplishments as solely our own. And of course, the other side of this is not just that it’s not true—not just that the emperor has no clothes, but that everyone else should pretend he’s fully clothed too. So, the Myth of Independence is not just about the truth of being connected and interdependent on one another; it is also about the high value that gets placed on buying into the myth and believing that you are independent; and the high value placed on striving to be independent, another corner stone of the ableist culture we live in.

Interdependence moves us away from the myth of independence, and towards relationships where we are all valued and have things to offer. It moves us away from knowing disability only through “dependence,” which paints disabled bodies as being a burden to others, at the mercy of able-bodied people’s benevolence. We become charity cases, a way for able bodied people to feel better about themselves and we in turn, internalize our sense of being a burden, sad, and tragic. All of this sets up a dynamic where disabled people feel like we have to be “liked” in order to receive basic daily access to live and where able bodied people feel entitled to receive praise and recognition for providing access. This is not access intimacy and this dynamic of disabled people being “dependent” on able bodied people shapes so many disabled people’s lives and is the foundation upon which so much domination, control, violence and abuse happens.

Liberatory access is something I work to practice in my life and political work. Whenever we have events, I always think, how can we build access intimacy into our access work and our political work at large? I think of liberatory access and access intimacy as things we can use to unhinge ableism. These are tools we can use in our work to confront ableism and all forms of oppression because disabled people are not only disabled: we are people of color, we are all different genders and sexualities, we are from different class backgrounds and cultures, we are survivors, bystanders and offenders—we are human. In our campaigns and at our conferences, we can ask our selves, how do we use this opportunity to practice parts of disability justice? How can we help grow access intimacy? Or what would liberatory access look like? In the same way that we would work to try and practice racial and gender justice, again, in service of things such as justice, building community, trust, love, we can work to practice disability justice.

 

Closing

In “Feeling the Weight: Some Beginning Notes on Disability, Access and Love,” I wrote:

These are the parts of disability justice and liberation that keep me up at night, that have hurt more than any ableist remark, that have left more scars than any surgery. This is the underbelly of ableism. This is what I fear we will be left to wrestle with after every building is made accessible and every important policy is passed.

In all of my work for disability justice, I always come back to the human parts of disability. The parts that we would rather not talk about. The parts that are not about the bills or budgets or laws or services. The parts that live under our skin and inside of our bones and cells. The parts that are buried. The parts that most of us have had to learn how to navigate on our own, if we learn to navigate them at all.

I love being disabled and my history of disability has been so drenched in trauma and sorrow, pity and isolation, silence and pain, shame and guilt, violence and abuse. I don’t know how to talk about disability without talking about these parts—without pulling them out of their hiding places and holding them out to show you and asking, where are yours?

I don’t know how to be disabled without being all of who I am: a queer disabled korean transnational and transracial adoptee woman survivor from the Caribbean non-mainland U.S., always searching for others who have had to learn how to live on the outskirts; who know how to survive off of longing and laughter. These identities and experiences are all part of each other and asking me—or anyone—to separate them is not only oppressive, it’s impossible.

Access intimacy has transformed my life and transformed my present, even if I can’t change my past. It is one of the ways I practice disability justice in my everyday life and one of the ways I ask others to do the same. Ableist access has shaped so much of who I am and every relationship I have ever had. When I think of all the oppressive forces in my life that demanded (often violently) that I shrink myself in order to survive, ableist access is easily one of the most prominent.

Access intimacy means so much to me, that it is hard to articulate. When I try and explain it the people with whom it exists, I never seem to do it justice. When I think about disability justice, I think about access intimacy because it has a direct affect on my daily life and makes love possible. And in any of our work for liberation, isn’t that what we should be working for: anything that makes love more possible? Anything that makes joy, healing and trust more possible? Anything that can take away the power and cruelty of oppression, violence, abuse and trauma?

Access intimacy makes love more possible in my life and in myself. And I will always be grateful for that. I’ll never understand the magic of it or how it works exactly, only that it softens my heart and let’s me exhale. Only that it gives me hope, as terrifying as hope can be when your survival has always depended on fear and the lesser of two evils. Access intimacy has been a lighthouse in the storm of ableism, beckoning me back home to love and reminding me that I never left.

Thank you.

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.

 

—

*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