“You’re the lucky one. You’re not broken.” That’s what my daughter said to her little brother on a brisk fall morning, as I hurried them out the door, having gotten a late start on the way to her weekly therapist appointment. 10 years old, and she had already learned that the unbearable discomfort that comes with noise and texture; the inability to gauge social cues among her peers, the constant swing of mania to depression all have marked her as an outsider. There are no benefit concerts, no 5K runs, no classroom sensitivity pep talks from school counselors for kids like her. She has no other word for how she experienced the world. We tried to dress up the diagnosis as best we could. Painting a flowery picture with words like “unique”, “special”, “creative”, but she knows the world simply sees her as broken.
Having spent the last 20+ years talking a lot about disability, accessibility and disability justice, I wish I could tell you that the conversations are easier now, that the resistance is less fierce and the commitment deeper, but I can’t tell you that. In truth, the conversations are still pretty much the same, the resistance is actually a bit harder, and a deeper commitment still remains rather elusive. ’ve been around the disability block for a while, and I have a not so unique position in life. I myself have lived with “invisible” disabilities since my late teens. I'm the older sister of a brother who struggles with serious mental health challenges, and the parent of a neuro-spicey child. By necessity I have become quite the advocate, for myself, my family and my community
Today, what you hear me say, may be a deviation from what you're used to when it comes to framing a conversation around disability, I’m still leaning into it myself. Over the last several years, I’ve shifted my advocacy focus from a strong access standpoint, to a more nuanced understanding around the intersection of disability and oppression as a whole. Writer, educator and community organizer for disability justice Mia Mingus explains: “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..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.”
Disability Justice is a term that was coined in 2005 by Sins Invalid, a collective of disabled queer women of color, including Patty Berne, Mia Mingus, and the late Stacey Milbern. Disability Justice builds on the disability rights movement, taking a more comprehensive approach to help secure rights for disabled people by recognizing the intersectionality of disabled people who belong to additional marginalized communities. Disability justice is a framework that acknowledges the intersection of oppression, and centers the ways that disabled people experience the world through systems that are not built for us, especially the twice, thrice and more oppressed among us.
The work, the dismantling of a deeply ableist, racist, classist and homophobic system can seem beyond daunting, and I want to acknowledge that this shift of focus from a more palatable accessibility framework, to a disability justice understanding of interdependent liberation can feel… well maybe a little militant. And personally, I”m okay with that, because I think we as a society and a denomination are far beyond the pleasant politics of elevator access. Now, I'm not discounting the amazing work that has been and continues to be done by dedicated and fierce advocates for universal access.. What I know to be true is that we are trapped in a system that tells us that we, with our queer, black/and brown, twisted bodies and divergents minds, well we should be content with second or even third class citizenship, that our mere existence is a gift given to us because in the old days, well friends, we know what they did to us back then. Knowing that, I’m going to ask you today to approach this, perhaps new to you concept, with an open mind and generous heart.
My mother used to teach college students English Lit., and my childhood was spent with words, rolling them around in my mouth like a sweet candy and breaking them open so that I might relish their individual parts. I spend a lot of time thinking about language, and I deeply connect with the power of language to help us define and express our identities. Through my love of words, I learned that the Latin prefix “dis” d-i-s means “apart,” “asunder,” “away”. In fact, a google search for words similar to “disability” will render; “disorder” “dysfunction”, “affliction”, “aliment”, “infirmity”, “incapacity”, and “malady”. None of these words captures the beauty, the talent, the diversity or lived reality of my disabled community. Language, especially the language of “othering” in the United States comes from the limitations of a colonized framework. Disabled Cherokee scholar Qwo-Li Driskill notes that “In precontact Cherokee, there are many words for people with different kinds of bodies, illnesses, and what would be seen as impairments; none of those words are negative or view those sick or disabled people as defective or not as good as normatively bodied people.”
This is the problem with the language that surrounds the disability community, we as a community didn’t create it for ourselves. We have no other term to use, beyond one that explicitly frames our disorder or our perceived dysfunction over our humanity and our wealth of abilities. We’re then left to attempt to navigate a reality that is defined by our ability to participate in a political and capitalist system, one that determines our worth through a medical model of identity and by our ability to produce.
In both the political and medical model the “problem” lies with the individual, but what if, what if we were to start to see the experience of being disabled as an impairment within society at large, highlighted by our unwillingness to adjust our infrastructure and our understanding so that those with disabilities are not only granted access, but fully recognized as valued parts of our global community? How different would our world look and feel with an understanding that a person’s functioning is not the issue, but rather our society’s lack of accommodation and inclusion is the true disability?
In order to dismantle the systems of oppression that not only deny access, but also inhibit our bodily autonomy we must directly challenge the status quo. Author and Disability Justice advocate Leah Lakshmi Piepzna-Samarasinha says that “our focus is less on civil rights legislation as the only solution to ableism and more on a vision of liberation that understands that the state was built on racist, colonialist ableism and will not save us, because it was created to kill us.” These can be hard words to hear, but they are absolutely backed up by a not so distant history of institutionalization, forced sterilization, enforced poverty and eugenics. And make no mistake, our Unitarian Universalist ancestors in this country are a part of this tragic history. Leah goes on to say that “If collective access is revolutionary love without charity, how do we learn to love each other? How do we learn to do this love work of collective care that lifts us instead of abandons us, that grapples with all the deep ways in which care is complicated?”
I believe that it is here in the pursuit of revolutionary love that Unitarian Universalists can have a broad impact if, and only if, we are willing to stay at the table in new and expansive ways. This is going to take trust, on both sides, and a good bit of sacrifice. Because for far too long our denomination as a whole has relegated the disability movement to the back of the line. Our disabled Beloveds have been asked time and time again to sacrifice our own dignity and right to place all in the name of historical preservation and the love of our beautiful buildings. We continue to see congregations pat themselves on the back for making row cuts in the sanctuary, but yet won’t hire a Minister who discloses a disability because it might cost too much to make accommodations. And we will proudly dedicate an accessible stall in the downstairs restroom, but we will push adult beloveds with mental health challenges to the margins of our communities, because they make us uncomfortable and afraid.
Disability Justice is about disrupting the comfort of mere accessibility. It is the acknowledgement that we don’t want a place at the table, we want to flip the table, to build a new one that not only has a cut out and space, but comes with fidgets, with mics, and engaging multi-platform access. We want a table where we lift up the lived experiences of the marginalized, so that we can build an expansive community that centers love. A love that is present not in spite of our differences and challenges, but because of our humanity. As Unitarian Universalists we are called to use our privilege and power to challenge systems of oppression both within our congregations and our broader communities, yet we consistently fail to frame this conversation as a justice issue. I don’t discount the enormity of the conversation and the complexity of possible resolutions, but our faith begs us to at least try.
Freedom fighter Patty Betne says: “A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. These are the positions from which we struggle. We are in a global system that is incompatible with life. The literal terrain of the world has shifted, along with a neo-fascist political terrain. Each day the planet experiences human-provoked mudslides, storms, fires, devolving air quality, rising sea levels, new regions experiencing freezing or sweltering temperatures, earthquakes, species loss and more, all provoked by greed-driven, human-made climate chaos. Our disabled and other marginalized communities are often treated as disposable, especially within the current economic, political and environmental landscapes. There is no way to stop a single gear in motion — we must dismantle this machine."
I’ve painted a rather stark picture from what you may have encountered before. This way of shifting the focus makes many people uncomfortable, and I want to hold that as real and true, and encourage you to lean in, to wrestle some with that discomfort. In my experience, it is often those moments of disruption in my core understanding where I find the most beautiful realizations will grow. I have a theory, I’m sure it’s not original, but I suggest that our discomfort around people with disabilities is born out of our desire to avoid the mirror they hold for us. Because somewhere deep inside us we all know that our “able” bodies are a fleeting reality, a temporary state of being. Our discomfort comes not from our own fragile state of humanness, but the realization that to be disabled means that we too will then be othered, we will live in a system that does not see us as whole and worthy, a system that is designed to work against us at every turn.
Beloveds, that right there, is the space that we need to occupy, that is a space of a co-conspirator that will work with us, lifting up the lived reality of the most marginalized among us. And there is so much our temporarily able bodied allies can do, and it starts with putting your privilege on the line, and living our Unitarian Universalist values out loud in our congregations and in our world. I’m issuing you a challenge today, to spend some time researching the Disability Justice Movement, educate yourself on the myriad of ways that our laws, including the Americans with Disabilities Act, force disabled people into generational poverty. Spend time learning the history of the disability rights movement, one of many histories that are not taught in our schools. Learn about the 1977, 504 Sit-In, an occupation of the San Francisco Federal building by over 200 people that lasted for 28 days. Discover the March 13th, 1990 Capital Crawl, where 80 disability activists left their wheelchairs and adaptive mobility devices behind to literally crawl up the steps of the US capital to demand equal access. I’m challenging you to apply a disability justice lens to your favorite social justice issue, because I can promise you that it does apply, and if you can’t figure out how it applies, keep researching.
Our is a faith with Love with a capital “L” at our center. We cannot realize our vision of a world where the inherent worth and dignity of every person is realized unless we grapple with our failings and commit to a framework of interconnected mutual care. I know deep in my soul that there is a world waiting on the horizon where our differences are celebrated, our needs met with compassionate care and interdependence lifted up as a model of Beloved community. I know this is possible, because we have the chance now, to raise a generation that understands that we need each other, all of us, to not just survive but to thrive. I believe we can, because on that chilly fall morning three years ago, I watched my son step in front of my daughter and say, “You’re not broken, the world is.”
May we be the architects of repair.
Amen, Bless Be, and Ashay