Tag Archives: ableism

Forced Intimacy: An Ableist Norm

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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Access Intimacy, Interdependence and Disability Justice

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

 

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

 

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

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

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

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

 

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

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

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

 

Access Intimacy

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

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

From “Access Intimacy: The Missing Link:”

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

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

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

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

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

 

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

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

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

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

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

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

 

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

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

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

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

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

 

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

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

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

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

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

 

Liberatory Access & Interdependence

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

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

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

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

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

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

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

 

Closing

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

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

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

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

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

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

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

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

Thank you.

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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 and 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 of many different small boxes with text in them, varying in sizes. Each quadrant is in a different color. The boxes are all connected to each other with bolded and thin lines, forming a web-like effect, filling the entire page. There are main categories and subcategories differentiated by bolded text. The boxes are organized according to the outline listed below. In the outer four corners are 4 large boxes with Bolded text. The top two on either side read “Science and Medicine” and “Health” and the bottom two on either side read, “Access” and “Safety.” In the middle of all the little boxes, in the middle of the visual are four large boxes that correspond to the 4 outer large boxes. The top two read, “Eugenics” and “Desirability” and the bottom two read, “Charity and Ableism” and “Population Control.” There are 4 large arrows behind the boxes that connect each outer corner large box to it respective middle large box. Science and Medicne is connected to Eugenics; Access is connected to Charity and Ableism; Safety is connected to Population Control; and Health is connected to Desirability. In the bottom right corner there is small grey lettering that reads, “Posted on leavingevidence.wordpress.com Version: 2015.1]

[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 of many different small boxes with text in them, varying in sizes. Each quadrant is in a different color. The boxes are all connected to each other with bolded and thin lines, forming a web-like effect, filling the entire page. There are main categories and subcategories differentiated by bolded text. The boxes are organized according to the outline listed below. In the outer four corners are 4 large boxes with bolded text. The top two on either side read “Science and Medicine” and “Health” and the bottom two on either side read, “Access” and “Safety.” In the middle of all the little boxes, in the middle of the visual are four large boxes that correspond to the 4 outer large boxes. The top two read, “Eugenics” and “Desirability” and the bottom two read, “Charity and Ableism” and “Population Control.” There are 4 large arrows behind the boxes that connect each outer corner large box to its respective middle large box. Science and Medicine is connected to Eugenics; Access is connected to Charity and Ableism; Safety is connected to Population Control; and Health is connected to Desirability. In the bottom right corner there is small grey lettering that reads, “Posted on leavingevidence.wordpress.com Version: 2015.1]

MIC Visual Version 2015.1 Fullscreen & Download

 

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

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

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

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

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

 

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

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

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

 

The Medical Industrial Complex Visual Outline

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

 

 

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

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

forsythia

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 from 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.

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Moving Toward the Ugly: A Politic Beyond Desirability

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

water color painting of an octopus done in greens, yellows, oranges and pinks.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 isWe 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.

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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.

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Changing the Framework: Disability Justice

How our communities can move beyond access to wholeness

(Written for the RESIST Newsletter, November, 2010.  Initially posted on the RESIST website.)

spider web stretched between rocksIn my time doing social justice work, I have found that disability is something most people know very little about—and that includes seasoned, fierce and well-respected community organizers and activists. People usually think of disability as an individual flaw or problem, rather than as something partly created by the world we live in. It is rare that people think about disability as a political experience or as encompassing a community full of rich histories, cultures and legacies.

Disability is framed as lacking, sad and undesirable: a shortcoming at best, a tragedy at worst. Disabled people are used as the poster children of environmental injustice or the argument for abortion rights. For many people, even just the idea that we can understand disability as “not wrong” is a huge shift in thinking.

Towards interdependency

Our communities and movements must address the issue of access. There is no way around it. Accessibility is concrete resistance to the isolation of disabled people. Accessibility is nothing new, and we can work to understand access in a broad way, encompassing class, language, childcare, gender-neutral bathrooms as a start.

We must, however, move beyond access by itself. We cannot allow the liberation of disabled people to be boiled down to logistics. We must understand and practice an accessibility that moves us closer to justice, not just inclusion or diversity.

As organizers, we need to think of access with an understanding of disability justice, moving away from an equality-based model of sameness and “we are just like you” to a model of disability that embraces difference, confronts privilege and challenges what is considered “normal” on every front. We don’t want to simply join the ranks of the privileged; we want to dismantle those ranks and the systems that maintain them.

In no way am I saying that accessibility is not important—it most definitely is. We cannot have disability justice without it, but we want to question a culture that makes inaccessibility even possible. Just because disabled people are in the room doesn’t mean there is no ableism (a set of beliefs that favors non-disabled people) or that people won’t pretend we’re invisible.

This work is about shifting how we understand access, moving away from the individualized and independence-framed notions of access put forth by the disability rights movement and, instead, working to view access as collective and interdependent.

With disability justice, we want to move away from the “myth of independence,” that everyone can and should be able to do everything on their own. I am not fighting for independence, as much of the disability rights movement rallies behind. I am fighting for an interdependence that embraces need and tells the truth: no one does it on their own and the myth of independence is just that, a myth.

The power of disability justice

Disability justice has the power to not only challenge our thinking about access but to fundamentally change the way we understand organizing and how we fight for social change.

It has the power to bring our bodies back into our conversations. What do we do with bodies that have limitations, that are different (no matter how much we want to change them)? How do we acknowledge that all bodies are different, while also not ignoring the very real ways that certain bodies are labeled and treated as “disabled?”

Disability justice activists are engaged in building an understanding of disability that is more complex, whole and interconnected than what we have previously found. We are disabled people who are people of color; women, genderqueer and transgender; poor and working class; youth; immigrants; lesbian, gay, bisexual and queer; and more.

We are pushing for an understanding of how ableism affects all of our movements for justice. We are drawing connections between ableism and other systems of oppression and violent institutions. We are pushing for a more nuanced and fierce interrogation of the medical industrial complex and understandings of health, wellness and healing that aren’t rooted in ableist notions of bodies and what is considered “normal.”

We are trying to understand how we can build organizing and community spaces that are mixed-ability, cultivating solidarity between people with different disabilities. We are working to move together, as disabled people, through a world that wants to divide us and keep us separate.

Disability is not monolithic. Ableism plays out very differently for wheelchair users, deaf people or people who have mental, psychiatric and cognitive disabilities. None of these are mutually exclusive, and are all complicated by race, class, gender, immigration, sexuality, welfare status, incarceration, age and geographic location.

Finding home

As a queer, disabled woman of color, disability justice feels like a political home for me, a place where I can engage in conversations about disability and race and gender and queerness and capitalism and more.

I tried to look to the disability rights movement, but I saw very few leaders who reflected me, and I found that, for the most part, disability was being talked about as an isolated single issue. Having been involved with racial justice, queer liberation, reproductive justice and feminist movements most of my life, I have rarely encountered spaces that addressed disability or connected it with other issues.

What does it mean to not have the luxuries of deciding when to use the bathroom in the place where you live, having alone time or going to visit a loved one in their home? How do we re-imagine relationships that center interdependency? How do able-bodied people move from simply “supportive allies” to political comrades who are actively incorporating a disability justice understanding into their work and lives?

We cannot fight for liberation without a deep, clear understanding of disability, ableism and disability justice. The bodies of our communities are under siege by forces that leverage violence and ableism at every turn. Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable. How do we build across our communities and movements so that we are able to fight for each other without leveraging ableism?

I imagine a world where our organizing and activism is less segregated, where our movements and communities are accessible and don’t participate in the isolation of disabled communities. I imagine places where we fight for whole and connected people, families and communities.

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