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.)

In 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.

To the Other Side of Dreaming: Finding Housing & Putting Disability Justice Into Practice

Dear loved ones,

Stacey Milbern and I have decided to live together and create/cultivate interdependent queer disabled korean diasporic radical women of color home together.  We are embarking on a journey together to put pieces of disability justice into practice, love each other and live on the other side of dreaming.  A huge part of this is our need, as crips, as queers, and women of color, as korean (and all) diasporic people; we need each other and we need you.

We’re reaching out across our bi-coastal networks to move to the Bay, specifically Berkeley because of the level of access that can be found there for disabled folks. This is a huge, complicated and multidimensional decision that we have struggled with and we will be writing more about it to you, our loved ones and family, in the coming months.

But right now we need you. We need help finding a place to live and creating a community careshift collective.

Need One: Affordable Accessible Housing is Not an Oxymoron: We dream about an amazing 2 bedroom wheelchair accessible house/housing filled with love and lots of light in Berkeley, CA…  We hope to have a great landlord that understands disability justice, but it is not a requirement since we can use our crip super powers to work through anything and with anyone!

Need Two: Growing Collective Interdependent Access and Care Through the Cracks of State Systems: Evidently in this country, disabled people don’t move–and we certainly don’t move together.  Our systems for disabled folks are broken, we know this. And we are trying to leverage what we can to get to a place where we could live outside of them, but until then… We need to create a community careshift collective to support Stacey for the months she will be in Berkeley before her disability/medicaid services get started in California. Stacey is a powerchair user and we need people who could come to our home in shifts to help her do things like get out of bed, use the bathroom, get dressed, etc…  We dream of a group of community-minded, interdependent disabled and non-disabled folks to help out with Stacey’s daily access needs. We dream of moving beyond capitalist notions of “payment” for care/access and instead want to have conversations and inspiration-sessions with those interested in what we can all offer and give.  We especially invite folks who are interested in putting disability justice into practice and learning together with us.

Do you want to be part of creating collective access with us? Do you want to be part of creating something out of nothing that can hold us outside of the current broken and dignity-stealing systems we are up against?

Our first priority is housing. Please let us know of any information, contacts, or leads you have ASAP.  Please feel free to pass this on to loved ones of your own who might be able to help us.  Thank you!

To the other side of dreaming,

Stacey and Mia

Please contact us: miamingus[at]gmail[dot]com & staceymilbern[at]gmail[dot]com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Disability Justice Gathering in Detroit, June 21st

for all crips working on Disability Justice, join us!  This space is so needed and coming off of the disability justice track at the AMC, i think it will be a great place to connect, build community and do some shared visioning!  Please pass on to other disability justice crips you know who will be in Detroit!

–

Hello!

On June 21st (the purple note and light blue light of the yellow moon) there will be a community-organized day (light) in Detroit. This day (light) is for disabled folks who do disability justice work. We see disability justice as creating a world where people are interdependent and disabled people get to be their whole selves. We want to come together, share, strategize, dream, have fun, and build community.

We want disabled people to join us! Join us: if you are working to create a more whole and deep understanding of disability.* Join us: if you dream about a world that understands disability beyond just access; that understands ableism; where disabled people feel connected to each other; where you can talk about what it means to be a person of color AND queer AND poor AND disabled, instead of choosing just one (light blue). You do not have to be in an organization.

The details: June 21, 2010 (the purple note and light blue light of the yellow moon) from 1pm – 7pm (light blue blob after the middle to black in the dark), on Wayne State University in Detroit, MI.

We will start with lunch and end with a dinner. After dinner, we will have an open mic group time from 7pm -8pm (black blobs after the middle to brown blobs after the middle). Bring stuff (chapbooks, buttons, crafts) you want to sell or share with others!

Let us know if you are interested in joining us! You can let us know by emailing Mia at miamingus@gmail.com or calling Stacey at 910-722-9552. We need to know if you are coming by Wednesday, June 16th (pink, the brown note and yellow light of the yellow moon).

We will be making sure the space is scent-free, flash-free, has vegan food options, wheelchair accessible and sign language interpreted.

Please include your contact info and let us know if you:
1.) need childcare

2.) have food you cannot eat

3.) have an access need that we need to know about. (an example might be needing a person to help you understand what the group is saying or a ride to the space).

We value what all disabled people can bring. This includes people with psychiatric [mental], developmental or cognitive [thinking], chronic illness, and learning disabilities. Just so folks with allergies know, there will be at least one (light blue) assistance dog present. If folks send us their RSVP late, we will try to meet people’s needs as best we can. We will send out location info to people that RSVP.

To find out more, visit creatingcollectiveaccess.wordpress.com

In community,
Stacey, Leroy, Leah, Sebastian, Patty, and Mia

* This may include doing work around disability and race, militarization [war and control], class, environmental justice [land and control], gender, sexuality, incarceration [prison and control], reproductive justice [our bodies and control], citizenship [belonging to one country], violence, care, parenting and family.

Creating Collective Access–Check It Out!

Are you a crip and/or someone with a chronic illness that is going to be in Detroit this summer for the Allied Media Conference and/or the US Social Forum?

We know that for many of us, access is on our minds when it comes to traveling, navigating the city, movement spaces, buildings, sidewalks, public transportation, rides, the air, the bathrooms, the places to stay, the pace, the language,the cost, the crowds, the doors, the people who will be there and so so so much more.

Would you like to be connected to a network of crips and our allies/comrades who are working together to create collective access?

What is collective access?  Collective Access is access that we intentionally create together, instead of individually.

Most of the time, access is placed on the individual who needs it.  It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend.  Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people).

Access is complex.  it is more than just having a ramp or getting disabled folks/crips into the meeting.  Access is a constant process that doesn’t stop.  It is hard and even when you have help, it can be impossible to figure out alone.

We are working to create mutual aid between crips and beyond!  Things we are thinking about as possibilities for collective access in Detroit…

READ SO SO MUCH MORE HERE: http://creatingcollectiveaccess.wordpress.com/