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.

Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit

This post was originally written for the INCITE Women of Color Against Violence blog.

This summer, Detroit was an opening for me. And not just because it was the first time that there was a Disability Justice track at the Allied Media Conference (AMC) or because of any workshop or plenary I attended. Detroit was an opening for me because I got to spend over a week creating collective access with a group of twenty-three disabled folks and our non-disabled comrades. I got to spend eight days getting a glimpse into a different world and experiencing a kind of interdependency that let me loosen my shoulders; that let me breathe.

Creating Collective Access (CCA) was about re-thinking how we, as disabled and chronically ill people, engage in movement spaces. This was about imagining something more and knowing that we had to do it for ourselves because it is so rare for movement spaces to ever consider disability and access in ways that go beyond logistics; in ways that challenge the ableist culture of our work. This was about being very clear that we wanted to shift the individualized and independent understanding of access and queer it and color it interdependent. This was about building crip solidarity. We wanted to create a liberated space. We would pool our resources: body and ability, financial, material and more. We would not just think about disability as separate from class, age, race, queerness, family, children, gender, citizenship, violence, but we would understand it as intimately connected. We would think, not just about “conference and workshop time,” but we would also think about social time and what social spaces were accessible and how we would make sure no one was isolated or left out. Because in our movements much of the relationship building, socializing and bonding is done in very inaccessible ways in very inaccessible places—we know this all too well.

It all started with need.   About a month before the AMC, access was the number one thing on our minds.  What will we do?  How will we get to food and afford enough personal attendants to come with us?  Who will push wheelchairs?  How much walking will there be?  Who will help you go to the bathroom?  How will we manage the pain, the schedule, and the pace?  Where will we stay and will it be accessible (the majority of community housing just wasn’t an option)?  How much will access cost?

We were hit with the reality of having to be in another city for an extended period of time, under intense conditions; the same intense conditions that frame most conferences.  We knew it would be long days, stretching into late nights.  We knew everyone would be stretched thin and we knew that meant something totally different for us.  We knew we could make it through, by squeezing ourselves, as we’ve done before, into ableist practices of how bodies should function and perform, but we also knew what that would mean for our bodies (and our hearts) while it was happening and once it was all done.  We wanted to be able to stay in our bodies as much as possible, take care of our disabled selves, and be part of the community that was coming together for the AMC and the USSF.  We wanted to be whole and connected to ourselves, each other and other activists and organizers—was this possible?

We started to dream: how could we use this as a way to build community, put disability justice into practice and deepen our understanding and analysis of what it means to do this work together?  What if we invited other crips to do this with us—crips who were coming to the AMC and were probably agonizing over the very same things?  What if we did community care in a way that made space for many different kinds of bodies?  What if we made a commitment to each other to move together and centered our access and care around queer and trans crips of color?  What if we tried to create the kind of world we want to live in?  We do it in our disability justice work, so why not try and create it for the time we’re in Detroit?  CCA began as a hope and a dream to make what we need.  CCA is a reflection of the courage, resiliency, and creativity that disabled folks have in the face of an inaccessible and ableist world.

The bottom line was we needed each other.  Interdependency is not a choice.  We were not going to be able to get through the AMC and traveling to another city without each other.  We didn’t know what the environment would be like, how many people would be there and what kind of access needs would arise on-the-spot, as they always do.  We would be building the plane as we flew it.  The thought of thousands of social justice folks from the left converging at the USSF was an anxiety-provoking access nightmare, in and of itself.   But we knew if we had each other, we would be okay.  Together, the three of us, three queer crip women of color, got to work.

We drafted and put out a call to other disabled folks who were coming to Detroit and who wanted to be part of a community-led access effort.  We made a blog, explaining what we were trying to do and our vision.  We were clear that this was interdependent and we invited people to be part of creating this with us.  Leah worked to get scent free information out to folks and create a scent free room, while Stacey and I worked on a basic structure for access and communication. We scrambled with three weeks to go and came up with a model of pods.  We knew the disabled people who were coming would already have some type of access plan in place and we knew it would be with people they trusted and had relationships with.  Together, each grouping formed a pod and our goal was to connect the pods to each other.  We asked people to tell us about their pod’s access needs and what they could offer and contribute.  It was broad.  Some people were able to walk and get food, others were better at coordinating; some people had access to credit cards and others would need cash to be available; some people had personal attendants or able bodied friends/family members with them who could also help with getting food, driving and pushing wheel chairs.

I had done collective access before, but with three people, including myself; or for a disability justice meeting or when traveling with one other disabled comrade.  I had never done anything like this before with twenty-plus people, half of whom, I had never met before, on our way to a city that many of us had never been to, all in a container of shifting how we understood access, past just survival.  This time, we were all jumping together.  And we flew.

We called ourselves the Pod People and we worked seamlessly together with great affection and enjoyment.  It was truly a collective effort, centered around a simple value of care.  Everyone pitched in getting food, helping to serve food, audio describing, reaching, pushing, texting, calling, asking, offering.  We schemed together to get more accessible rooms opened for us in the dorms, access to a refrigerator and the accessible shower key from the dorm staff.  Everyday, we had lunch and dinner together, no one had to worry about not being able to eat because they couldn’t get into a restaurant, couldn’t get to the grocery store or couldn’t walk far enough.  And no one had to worry about being isolated while they were eating, as often happens to disabled people when they are in movement spaces.

When there were social events, we all talked about it and had two groups, the folks who wanted to go and the folks who wanted to stay in; we made sure no one was left out and checked in about access all the time.  We stayed up the first night after dinner talking about disability and race and queerness and invisible disabilities and coming out as disabled and bodies and gender and geographic location and our struggle to find community.  Some people were just starting to identify as disabled, having never called themselves “disabled” out loud before.  Others had been doing disability justice work for years and still others had been doing this work for decades.  A lot of us were trans, gender queer and gender non-conforming, most of us were women of color and almost all of us were queer.  We formed an almost all disabled space that centered all of who we were.  Amazing.

One of the most important pieces of CCA for me was a continued commitment to move together as crips and comrades.  Every time I attempt to move through the world with other disabled folks, I am always so astounded at how hard it is for disabled people to stay together, literally.  I watch how the world separates, isolates and divides us, so that we cannot move together.  I watch how it is constructed for us to move with non-disabled people, instead of each other; and how it discourages folks with different disabilities from moving together.  Trying to move with a group of disabled people with different disabilities is very hard, takes enormous amounts of problem-solving, energy and creative solutions.  To me, one of the most powerful opportunities of CCA was another chance to figure out how we can stay together and what it would take to create a world where we understand the weight of what “access” means.  So that when I say something is inaccessible, you don’t just think “there’s no ramp” or “there are no places to sit” or “there’s no close, accessible, free parking.”  Instead, you feel. You feel the weight of what inaccessibility means to us.  You understand inaccessibility to mean isolation, shame, exclusion, disappointment, loneliness, anger, privilege, sadness, loss of community and disconnection.  For eight days, it was amazing to be with people who know what “accessibility” means; who know and feel the weight of it; and who are working to transform it.

I learned so much and was rejuvenated from my time with the pod people.  Disability requires us to re-think “independence” and how we engage in movement spaces, down to how we think, move and communicate, down to our very bones.  As movements committed to social and economic justice, where are the disabled people in our communities, organizations, bases, and movements?  Are they isolated?  How are we re-imagining access in ways that include, but are not limited to disability; that encompass class, language, gender, mamas, parents and children?  What would access beyond logistics look and feel like?  Access that allows people to not just be included, but maintain their dignity and connection to their communities?  How do we care for each other in ways that allow us to stay connected to our bodies and stay connected to each other in order to build the kind of world that can care for us all?  We are learning and trying and learning and practicing and learning again.

With my deepest gratitude to the pod people: I will forever be changed.

For Caster Semenya, With Love

This is an outpouring of love for Caster Semenya. Wrong is not her name. What is wrong is the way she has been treated in global media. As three queer women, we have struggled with our own relationship to the feminine as it has been constructed in mainstream society. As a black woman set adrift in a sea of whiteness, it was hard to see myself as beautiful. My curves and skin color made me unattractive in my world. As a white, feminine woman who is also intersex, I have struggled hard to come to peace with my body. Doctors and the world around me have told me I am defective or have denied my existence entirely. As a disabled Korean adoptee, I grew up as an outsider, rarely seeing people who moved like me or reflected me in my community or in the media. I was constantly told that my body was something that needed to be “fixed;” that it was “wrong;” and that it, that I, was “undesirable.” We engage with each other as comrades, three queer women uniquely shaped by our lived identities and experiences. We were the odd ones out, queered by our bodies, but later we claimed our queerness with fierce intention and pride. Now we choose our difference, embrace what sets us a part from a constrictive mainstream. It is for these reasons that we feel a deep kinship with Caster Semneya. Her story unfolded internationally without her consent and knowledge. We write to right wrongs done to someone whose only crime was daring to be all that she is…

As disability justice activists, we must connect how ableism gets leveraged in service of heteronormativity, in service of white supremacy, in service of misogyny. Ableism gets used all the time to divide us and we must fight it at every turn. How do we begin to understand that it was Caster’s extraordinary able-bodied and gender-non-conforming abilities that threatened ableist notions of gendered bodies and propelled the exposure of her gender through the use of a medical “gender test” to expose her sex. This is not just about defining what a “woman” is, it is also about defining what a “normal body” is and what “able-bodied” is and what it is not; it is about defining what “intersex” is and what it’s not.

We must understand how the medical industrial complex and science are being used to profit off of our bodies and medicalize our genders, our abilities, and render, in this case, an 18 year old intersex South African black woman a spectacle for the world to stare at, gawk at, and examine—at her expense. We must see how this spectacle is connected to the spectacle made of disabled bodies everyday behind closed doors, in sterile white rooms, under florescent lights, in homes, at family dinners, birthday parties, a trip to the mall, to the park, down the street.

To read the full blog post, visit:  http://4castersemenya.blogspot.com