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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7 Comments

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7 responses to “Access Intimacy, Interdependence and Disability Justice

  1. Brilliant! the incarnation of intimacy

  2. So beautiful! Thank you for writing and sharing.

  3. Pingback: Longmore Lecture 2017 Recap: “Access Intimacy, Interdependence, and Disability Justice” – Disability Remix Blog

  4. yiann

    I’ve been following your writing and work since I heard you speak two years ago at a queer student conference at de anza college. it meant a lot to see a queer asian womxn onstage and hear your words, i feel that i learn a lot from your insights.

    thank you for pushing us towards access intimacy– i am able-bodied, and recently have often been reflecting on questions around access. i will be reflecting on what to do next.

  5. Pingback: Mia Mingus Longmore Lecture Video Now Available! – Disability Remix Blog

  6. Thank you ! I found your blog through someone reposting the blog post about Forced Intimacy. I have worked in group homes and nursing homes and it opened my eyes to how I have discounted and made life difficult for them. Then I found this one -read it out of curiosity and as I read I kept saying to myself ” thats why !” I had some major health issues as a child -wasn’t expected to live past 20 without surgery. I especially liked the section where you talked about needing to depend on others for survival and being able to figure out who those “others ” were that you could depend on !! I realize now a lot of the rejection I faced was because people either sensed it or realized it (who wants to be friends with a girl who might collapse and die at your feet at any time ?) and so avoided me. While my health has improved after surgery the mindset is still there for a “just in case my heart DOES give out sometime” . Thanks for being so open with your life. It helped me realize why I had the relationship issues that i did and that they weren’t my fault.