Feature Issue on Disability Rights, Disability Justice
Determined to Share Our Truths
I believe that storytelling and media making are forms of activism. Culture change is hard, and we have to have more stories about us and by us to show the world our wisdom, innovation, creativity, and brilliance. I am determined to share our truths, prophecies, and warnings with the world, especially those created by marginalized disabled people, because our wisdom is vital.
My approach to Disability Visibility was to find works that were political, personal, and powerful. My hope is that the reader comes away with a sense of how creative, innovative, prescient, and diverse disabled people are, and I hope they realize there's no single definition for disability.
Ableism is baked into our society. Our society worships youth, health, and capitalism. Many of these things exclude and marginalize disabled people with structural barriers that impact our lives. Whether disabled people are seen or not, we exist, which is why Disability Visibility is integral to any movement that is rooted in justice and political change. Disabled people are changing the world, whether the world recognizes it or not. In many ways, the future is going to be centered on disability justice activism rather than disability rights.
I am determined to share our truths with the world, especially truths as told by marginalized disabled people, because our wisdom is expansive and vital. Disability justice came about because the Disability Rights Movement does not focus on the needs and experiences of folks at the intersection of race, gender, ethnicity, and disability. For a long time, it has been white, middle class, and centered on people with physical disabilities. Disability justice is about collective liberation and how we don’t leave anyone behind. People with intellectual and developmental disabilities have been excluded and sidelined by so many disability rights organizations and movements. By accepting people as whole and unique, and by making activism as accessible as possibl, people with IDD can and should be embraced.
Digital portrait of Alice Wong. Artist: Jen White-Johnson
Editor’s note: Last fall, author Alice Wong spoke at a lecture and discussion event at the University of Minnesota, along with several people with disabilities on staff or affiliated with the Institute on Community Integration. The following is a portion of her remarks, delivered virtually at the event as part of a first-year experience course for freshmen at the University’s College of Education and Human Development.
I believe that storytelling and media making are forms of activism. Culture change is hard, and we have to have more stories about us and by us to show the world our wisdom, innovation, creativity, and brilliance. As a writer and editor, I am determined to share our truths, prophecies, and warnings with the world, especially those created by marginalized disabled people, because our wisdom is vital. I create and amplify stories in order to change the culture and provide more richness to how we think and feel about disability.
My approach to Disability Visibility was to find works that were different in perspective and style, but were all political, personal, and powerful. My hope is that the reader comes away with a sense of how creative, innovative, prescient, and diverse disabled people are, and I hope they realize there's no single definition for disability and that the disabled experience is full of messiness, nuance, and complexity. I didn't want to tell our stories in an attempt to humanize us or gain empathy from others, because we don't need to prove our humanity or worth. We are not a monolith. We are complex and ever evolving, and I want my work to be part of this evolution. I would like readers to get a tangible sense of what the world is like as a disabled person in a non-disabled world and how they have a role in unlearning ableism and being a co-conspirator in helping us build a world centered on liberation and interdependence.
Baked In
Ableism is baked into our society. Our society worships youth, health, and capitalism. Many of these things exclude and marginalize disabled people with structural barriers that impact our everyday lives. Talila A. Lewis wrote, “Ableism is a system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, health/wellness, and/or their ability to satisfactorily reproduce, ‘excel,’ and ‘behave.’ You do not have to be disabled to experience ableism.”
Disability rights activists in the United States need to decolonize their thinking that we are the most advanced just because we have some legal protections. We need to think beyond the individual mindset that is foundational to our society and not judge other cultures that are different. Disabled people exist everywhere. Whether the word disability is used or not, language is dynamic, and the meaning of disability varies, which is instructive in that there is no single definition that is correct or superior to others. Regardless of geography, disabled people are still silenced, hidden, stigmatized, and dehumanized. Whether disabled people are seen or not, we exist, which is why Disability Visibility is integral to any movement that is rooted in justice and political change. As someone who struggles to get adequate healthcare services from our country's publicly funded programs, I raised my bony fist in solidarity with disabled South Koreans who were part of a protest that lasted more than 60 days in 2012 and that sought to change the humiliating classification and assessment practices the government used for their benefits systems. I felt pride and joy when I read about the 2022 protests at subway stations during peak commute hours in Seoul by Solidarity Against Disability Discrimination, South Korea's largest disabled advocacy group.
The fight against ableism and inequality is universal and there is so much to fight for together. In Canada, disabled people were very active in protesting the passage of a medical aid in dying bill that expanded the criteria on who is eligible, including people with a range of disabilities who are not terminally ill. Countries like Iceland and the Netherlands have an almost 100% abortion rate for fetuses with Down syndrome. A letter published in a Dutch national newspaper in 2017 stated that the freedom to birth disabled children should be limited by the “financial burden to society.” And this is intentional, as some countries are increasingly opting for a targeted approach, which means commercial companies, health authorities, and policymakers are targeting specific genetic conditions. While prohibiting the prenatal selection of other groups, the Netherlands has singled out Down syndrome as the primary target of its national screening program. It is the first country in the world that offers non-invasive prenatal testing unsolicited to all pregnant women. Mind you, I am 100% pro-choice, but disabled feminists have critiqued the eugenic and ableist framing on prenatal screening. I feel despair and am overwhelmed when I see the systemic violence and ableism everywhere that seek to eradicate us, and yet I know disabled people around the world are doing amazing things and it excites me to no end. Disabled people are changing the world, whether the world recognizes it or not. In many ways, the future is going to be centered on disability justice activism rather than disability rights.
In Disability Visibility, Patty Berne writes that to survive climate catastrophe, we need to look to queer and disabled folks.
“The forces of capitalism, racism, ableism, transphobia, and homophobia may have cornered us into a vulnerable position in this unprecedented moment in our planet's history, but the wisdom we've gained along the way could allow us all to survive in the face of climate chaos,” Berne writes. “The history of disabled, queer, and trans people has continually been one of creative problem-solving within a society that refuses to center our needs. If we can build an intersectional climate justice movement, one that incorporates disability justice, that centers disabled people of color and queer and gender nonconforming folks with disabilities, our species might have a chance to survive. Welcome to our world. We have some things to teach you if you'll listen so that we can all survive.”
New Direction: Toward Justice
As a writer and editor, I am determined to share our truths, prophecies, and warnings with the world, especially by multiply marginalized disabled people, because our wisdom is expansive and vital. I deeply admire Berne’s wisdom. She is someone I learned so much from and she is one of the key architects of the disability justice framework.
Nomy Lamm, a disabled performer and activist who is part of the early formation of the disability justice framework, said “disability justice challenges the idea that our worth as individuals has to do with our ability to perform as productive members of society. It insists that our worth is inherent and tied to the liberation of all beings like transformative justice, reproductive justice, and environmental justice. It implies a movement-building strategy and an anti-capitalist critique.” The Disability Justice Movement was created by disabled queer women of color activists in 2005, including Berne and others who challenged movements to more fully address ableism. Disability justice emerged because the Disability Rights Movement does not inherently centralize the needs and experiences of folks experiencing intersectional oppression. Rights are given to you by the state, but this is a rather small scope that doesn’t capture the values and priorities of those who live at multiple margins. For a majority of the history of the Disability Rights Movement, it has been white, middle class, and centered on people with physical disabilities. Issue priorities and the emphasis of legislation as the driver of social change are centered by those people. The Netflix documentary Crip Camp is one example of how early movements, while important, were not the most inclusive or diverse. I’m not saying that these two frameworks are diametrically opposed and of course what I am describing is a broad generalization and multiple movements have occurred throughout history by different groups of disabled people. One of the principles of disability justice is collective liberation and how we don’t leave anyone behind. People with intellectual and developmental disabilities have been excluded and sidelined by so many disability rights organizations and movements. By meeting people where they are, accepting that they are whole and unique, and by making your activism as accessible as possible, such as different formats and content in plain language, people with IDD can and should be embraced by people who practice disability justice.
Right now, I am working on the follow-up to Disability Visibility, called Disability Intimacy. I have a similar approach with this one, in that it's an incredibly diverse and nuanced collection of original and reprinted essays by disabled people. It explores how caregiving, community access, and friendship offer us alternative ways of thinking about the connections we form with others. I am having so much fun editing this collection and cannot wait for it to come out, but I’m still struck by how few stories of disability are being told. Where are memoirs by disabled people of color? Where are the memoirs by Asian American disabled people? I can count a few, but that's not enough. It's not my goal in life to be some unicorn, but that's sometimes how I am made to feel, and scarcity is a scam. Don’t believe it. There is a vast whiteness and representation of disability in all forms of media that is so outdated. In the last few years. I’ve been thrilled to see so many amazing books by disabled writers such as Goodbye, Again: Essays, Reflections, and Illustrations by Jonny Sun; Sipping Dom Pérignon Through a Straw by Eddie Ndopu; The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me by Keah Brown; What My Bones Know: A Memoir of Healing from Complex Trauma by Stephanie Foo; and Nervous: Essays on Heritage and Healing by Jen Soriano and others. While numbers don't exist, I suspect the percentage of books published by disabled authors is still disproportionate and paltry. It's wonderful to see more work out there, but the crumbs aren't enough. Disabled people, and disabled people of color, in particular, deserve and demand more.