Tag Archives: belonging

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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November 6th

tree in fog

[Photo of a tree in the forrest surrounded by fog. Photo by Mia Mingus]

 

Today is November 6th, the day I was brought to the adoption agency to be adopted, the day the adoption agency recorded as my birthday, and the day I celebrated as my birthday for 25 years. It is the day I left my birth family, never knowing if I would return. It is the day I left my first home, my first land. It is the day that a strain of longing was born inside of me for something that I do not even know how to name or explain. It has eaten away at my insides, at times turning me into an empty shell of myself. It has taught me how loneliness can be a comforting friend.

 

My birthday, as is the case for many adoptees, is a complicated web of sticky feelings, some of which I decide to feel or not feel and some that overtake me without consent, pulling me in, down, back and under. November 6th got recorded as my birthday by an industry that profits off of the erasure of my birth family, the convenient construction of someone with no past. My life did not begin when I was placed for adoption; I was already here. Today is not my birthday.

 

I hate the confusion that surrounds my birthday. People still getting confused, “so which birthday do you celebrate?” “When is your real birthday?” Since finding out the truth, sometimes I would rather deny my birthday all together, no celebrations, no worries about what or how birthdays are supposed to feel like to someone who does not even know how to think about her own birth.

 

It only marks another diasporic year that I have spent separated from pieces of myself that may or may not even exist; pieces of my self that made me, created me, but don’t know me. It only marks a deep sadness at having celebrated something that was so wrong for so long, something that wasn’t real, the way sometimes entire decades of my life have felt.

 

It is a part of me, but it is not a birth. It is more like a death, a loss or a closing. And it means talking about things that sit so close to my heart, things that I don’t even completely know how to hold, let alone say. I have been missing korea before I even knew what “missing” was.

 

Having been ripped from one piece of earth and shoved into another, sometimes I think the only land I know, the only land on which I belong, is the shifting tides of the ocean. The place that has always brought me solace and has been able to hold my shifting adoptee disabled korean queer girl self. Sometimes I think that what so many of us are doing, the bravery of finding home and attempting to create it, is something I know nothing about. Something I have no business being a part of. I have no home, but myself, and even that isn’t always true. Belonging is something I know nothing about. Living on the other side of dreaming is nothing I know about, having only ever had dreams, distant blurry memories, to keep me alive.

 

I know I existed before November 6th, even if there is no trace, even if I can’t remember how my mother smelled or my sisters’ six inquisitive eyes gazing at me. I know I knew something about home at sometime, even if it, like everything else got re-written and stamped and filed away.

 

Maybe all adoptees find home in their own ways, maybe some of us never do; maybe our homes are in the leaving, in the moving; in the shifting of the wind that carried so many of us past the horizon. Maybe I belong nowhere; maybe that is how they like it—a living, breathing, constant experiment.

 

36 years ago I left my very first home for another temporary home, a foster home, before being adopted. Six years ago I left Atlanta, the first place that ever really felt like home, to build home in Oakland. Maybe this is a re-birth of some sort, into a second chance at belonging and creating home, a kind of returning all on to itself.

 

I know I knew something about home at sometime, maybe I will find it again.

 

It was not erased, just like me.

 

 

 

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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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everywhere and nowhere

I was talking with my father last night, my adopted father, and telling him that I always felt pretty disconnected from my family that I was raised in, both immediate and extended.  I never felt like I belonged.  I don’t even know what that means, ‘belonging.”  As a transracial and transnational adoptee, queer, disabled, woman of color; all of it.  I  never felt deeply connected to them.  Always felt odd; outsider.

So often it feels like a splitting.  Like a fracturing inside of me.  In a million different pieces; pulling one way and another at the same time.

We belong everywhere and nowhere at once, those of us living with multiple oppressed identities.  We make our homes out of debris, migrating when the storms come—learning how to survive through the rain and snow.  We make our home on the outskirts; on “this thin edge of barbed wire” (Gloria Anzaldua) and learn how to live without comfort.

Sometimes we have traded in parts of ourselves, just to know what it’s like to sit by a warm fire and sleep through the night.  Just to have a break, take a breath and loosen our shoulders.  But, I have found, comfort is never worth splicing myself open or erasing parts of myself.

We try and explain our lives through broken words and “well, it’s kind of like this” or, “no, no, it’s both and.”  But how can you explain the complexities of a life?  How can you explain the silent tearing of ableism?  The way the ocean feels?  The smell of garlic?  Or the color crimson?

I try and explain to my white parents what life was like as an adoptee disabled queer girl of color and we wade through together trying to make sense of a life witnessed from the shore and experienced below the surface.

I say, “I just don’t know where I belong.”  And they are silent because they know.

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