Medical Industrial Complex Visual

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

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

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

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

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

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

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

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

 

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

MIC Visual Version 2015.1 Fullscreen & Download

 

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

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

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

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

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

 

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

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

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

 

The Medical Industrial Complex Visual Outline

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

 

 

On Collaboration: Starting With Each Other

*Excerpts from the 5th Annual Queer & Asian Conference, “Collide, Connect, Create,” keynote address, delivered on April 28, 2012.

I would like to invite you to breathe, deeply. To remember why you do this work—this work for liberation. Think of the communities your work is in service of—hold them in your mind—feel them. What are your wishes and dreams for them? Let’s remember why we’re here, what brought us into this work of daring to create movements that value all of us; daring to assert that Queer Asian and Pacific Islanders matter; that we matter.

Let us ground in all those who have come before us and honor them. All the freedom fighters who have made this moment possible. All of the queer Asian and Pacific Islander (API) folks in particular that have gone the hard road of being the only queer person or the only person of color, or the only asian, or the only pacific islander. Let us ground in the legacy of racial justice and queer liberation organizing and community building, of immigrant justice work and radical women of color and trans liberation work. Everyone who has wanted something more than criminalization, isolation, shame, self hatred and invisibility.

Let us ground in and honor all of the people who are currently fighting for us. For all of us in this room—each and every one of us. For the first queer API person we ever met; or whose writings we read or who helped make it possible for us to be who we are. For the first time we were ever in a room full of queer APIs. For the queer APIs in the south, rural lands, small cities who don’t have access to this type of space and belonging. For the queer API folks who have families that do not support them. For everyone currently involved in and committed to building queer API community. For all of the people fighting for liberation in this country and around the globe in big and small ways whether they are working for food justice, reproductive justice, the community caretakers, child care workers, prison abolitionists, healers and radical educators.

And finally, let us ground in and honor those yet to come, the people who we do this work for. We hope we can give them intact queer API communities and organizing. We vow to be able to pass on concrete, substantial tools and learnings to them; and wish for them a deep sense of pride, belonging and dignity in who they are, in all of their complexities. Our work and our time is responsible to them and we work so that they may have a lighter burden to carry…

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

I want to specifically name my privilege as a disabled person, when so many of us are locked up in prisons, institutions, group homes, or in the back rooms of our families’ houses. I have a level of mobility that many disabled folks don’t have and I know it is a huge reason I am visible. As someone who is physically disabled and does not have mental or cognitive disabilities, I know how privileged it is to get to speak from the mic to a crowd full of people and be listened to…

I was asked to speak about collaboration and how we build alliances for social change. There is so much I could say about it, but really, to me, it comes down to our relationships. It’s not about the smartest analysis or the fanciest organizing campaign with sleek billboards, buttons and stickers. It’s about the quality of our relationships with each other, how well you can build community and how you treat people.

If we are truly committed to ending oppression and violence, then we must be committed to each other. Then we must live out of the simple truth that we need each other. We need each other. And this is where I would like to center my comments for today.

The best analysis in the world is useless if we don’t treat each other well. If we don’t invest our time and energy in learning how to love each other better, if we can’t build relationships that can last more than 2-5 years. If we can’t commit to practicing working out hard dynamics in our relationships or if we are recreating the very conditions we are fighting against inside of our collectives, organizations, and movements.

It doesn’t matter how much you know, if you’re not willing to work on your heart and your relationship with yourself. If you don’t know how to say, “I’m sorry,” “that really hurt my feelings,” or “I messed up.” None of this matters if you are interested in staying “right” all the time or always wanting to only talk about the places you’re oppressed and never talk about the places you are privileged.

All of us here know that oppression needs to be ended. All of us have been moved to come out here today. But then what? Our movements don’t lack people being inspired and motivated, it lacks what comes next: the day-in and day-out work to end oppression and violence that is not glamorous or easy.

Take the day-to-day work of being an ally to queer disabled API folks, for example. The work of learning about your able bodied privilege, valuing the voices of disabled queer APIs, making sure your events are accessible, fighting ableism in public and private, educating your fellow able bodied queer API comrades about their able-bodied privilege. As a queer disabled korean adoptee woman, I ask you, how are you connecting your identity as an able bodied person to your identity as a queer API? How are you connecting your fight for queer APIs to fighting ableism? How are you making sure that queer API community and family building is accessible for all queer APIs? How are you actively listening, valuing and learning about queer disabled APIs?

Because you can know about something and it doesn’t mean that your behavior is going to change. It’s the white middle class way of activism, isn’t it? If I know different, then I will do different, but we all know that it takes much more work to change. Good intentions are not enough. We need to practice. We have to be in it for the long haul.

Because hopefully what that sharp analysis should tell us, is that systems of oppression and violence are deeply embedded in our lives and world, intertwined with each other; and white supremacy and transphobia are not going to be ended in a campaign or in 5, 20 or 50 years. It is going to take a long time. And we have to be committed to each other through it. We have to think of our relationships as long-term relationships with each other, as people we will be working with and plan to know for the next 30, 40 years.

Any kind of systematic change we want to make will require us to work together to do it. And we have to have relationships strong enough to hold us as we go up against something as powerful as the state, the medical industrial complex, the prison system, the gender binary system, the church, immigration system, the war machine, global capitalism.

Because we’re going to mess up. Of that I am sure. We cannot, on the one hand have sharp analysis about how pervasive systems of oppression and violence are and then on the other hand, expect people to act like that’s not the world we exist in. Of course there are times we are going to do and say oppressive things, of course we are going to hurt each other, of course we are going to be violent, collude in violence or accept violence as normal.

We must roll up our sleeves and start doing the hard work of learning how to work through conflict, pain and hurt as if our lives depended on it—because they do. We have to learn how to have hard conversations and get skilled at talking about and dealing with shame, guilt, trauma, hurt, and anger. That’s the kind of skills building and workshops that I want to see at conferences! And not some new-aged privileged imperialist, “let’s go to India and get healed and work on our relationship disconnected from the rest of the world and injustice.” But rather, we are doing this in service of liberation because our movements, organizations, groups and communities are imploding from the inside. People get into fights and then we never see them in the same room again; most of our non-profits feel more like corporations with CEOs and dictatorships; break-ups divide entire queer communities or people are exiled or leave and never heard from again; activists are burning out or being traumatized by the very movements that seek to end trauma; campaigns fail because we don’t know how to listen and work together, so instead of coalitions, we have turf wars and undermine each other for next year’s grant that barley pays the bills.

We must work to transform our selves, each other and the systems we’re up against. The task in front of us is to learn how to value and practice individual, collective and systematic change together. There is no other choice. Someone once said, “ community is taking responsibility for the relationships in the group.” What if we moved from that place? What if we understood each other as our collective responsibility? What if we understood that we are all interconnected and what harms you will impact me—and THIS is why addressing power and privilege are so vital?

How can we demand accountability from the state, if we can’t even hold our selves and each other accountable?

How do we stretch for each other and learn to live past our lifetimes? How do we live in service of people 3-5 generations to come? How do we grow our skills to be able to center our vision and think long-term? That’s the kind of thinking I want us to have. Because, the truth is, most of us won’t live to see the kind of large scale change that we dream of, but we can do our best to lay the necessary ground work for the next generation to be able to take it and run.

I want to leave a legacy of useful tools and substantial work for the people coming after us. I want to be able to give them loving, intact queer API communities and API women (gender queer, trans and cis) who love themselves and each other. I want to give them a world free of sexual violence. But most of all, I want to be able to leave them with a legacy of stories of how people came through harm with each other, how they risked loving each other in the face of uncertainty, how they built family and community that centered resiliency and healing.

Because the truth is, we need each other. We need each other. I need you and each and every one of you make my life more possible. We owe our existence to each other in so many ways. I don’t know how you have survived, but I am grateful you are here.

Take some time to look around at each other. Connect with each other and realize all the brilliance in this room. Commit to each other and remember that every time we turn away from each other, we turn away from ourselves. Remember that loving each other as fellow queer API folks is loving ourselves. This is where coalition building, collaboration and building alliances across movements begins: with each other. Because movements, coalitions, communities… they’re all made up of individual, living, breathing people. What good is it if you claim solidarity and alliance with disabled people, if you don’t treat the disabled people you know well?

Commit to not letting go of each other, even when it’s hard—especially when it’s hard. Commit to finally learn that the ends do not justify the means. How many times do we have to learn that how we do the work is just as important as the work we do? Commit to thinking about after the meeting, after the protest, after the revolution. Commit to being a grounded force to end violence and oppression. Commit to being a grounded force for healing and community. Commit to learning about where each of you are different and how “our differences lie down inside of us,” as audre lorde talks about.

What I’m talking about is reinventing how we love each other and knowing that solidarity is love, collaboration is love. And really, isn’t that what queerness is about: loving? I am talking about growing and cultivating a deep love that starts with those closest to us and letting it permeate out. Starting with our own communities. Building strong foundations of love.

And I just want to be clear, I am not talking about love that isn’t accountable. I am not talking about staying in harmful and dangerous or abusive relationships. The kind of love I want us to grow is accountable and assertive. Really, I am talking about collective love, where we look out for each other…

I have been all over the country speaking for the past seven years and across the board, almost everyone I have met, has longed for community and love that will be able to be the foundation for justice and liberation. Community and love that are just and libratory. But most of us have been so hurt, experienced such harsh things, that we are afraid to try again. Each time community, political work or love fails us, it is that much harder to muster up the courage to try again. I know it’s hard. And I am not standing up here saying I am perfect at this by any means—far from it.

But what I am saying is that it is our only chance. We have to be bold. We have to be courageous. We have to be willing to risk again and again and again. In a violent and oppressive world, the work of love is never done.

Thank you.

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

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

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

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

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

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

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

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

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

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

Moving Toward the Ugly: A Politic Beyond Desirability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

[*share North Carolina story]

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

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

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

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

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

 

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

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

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

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

Magnificence has always been with us.

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

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

Thank you.

Edges

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

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

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

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

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

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

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

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

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