Almost every time I see a new justice initiative, I repeat the same cycle: I scan the list of what justice means to the organizers.
Time and time again, I see justice declared for people of color, immigrants, members of the LGBTQ community, sexual assault survivors, and more. Justice is declared as a need for women, but not often for women with disabilities like me. A fire rises in me. I tweet something snarky. I delete it. I try again. I’m disappointed, but I feel let down so often that I can’t bear the weight of that discouragement. Anger is far more comfortable.
Disabled people are so marginalized that when marginalized groups gather, we’re still on the margins. Even in the Christian Bible, when disabled people enter the scene, they’re on the edges. Sure, those men lowered their disabled friend through a roof to see Jesus, but most sermons I’ve heard preached about that passage focus on the friends, not the man on the mat. I took notice. Either hide your disabilities, I learned implicitly, or stay in your place on the edges.
I’ve lived with scars, internal and external, and injuries to my knees and spine since I was a child. Unlike my daughter with cerebral palsy and son with autism, I wasn’t born that way. Childhood abuse made me disabled. Because no one told me that I had been innocent, I thought my disabilities were my fault. I made him mad, but I wasn’t ever allowed to be mad about it. I didn’t say no when he came to my bed in the middle of the night. I should have been tougher, so I didn’t break at their will.
I believed all of those lies. I believed I deserved my limp. I believed I was still bound by the family rules that whispered, Don’t say or do anything to make the family look bad. The shame I never should have carried and my societal observations about where disabled people belonged taught me to play small, to blend in, to pretend nothing was different about my body.
That’s not an option for every disabled person, but it was for me. I’m privileged not only in that way but also by being in majority culture as a white, straight, cisgender, U.S.-born, college-educated woman. Now my surgical scars and intermittent use of canes, rollators, and wheelchairs all give me away as being disabled, but I still live with privilege even in the disability community.
In the past few years, I’ve learned to wield that privilege to break the rules. I can be angry when society says disabled people don’t even get accessibility to that emotion. No, I won’t stay where I’m put. No, I won’t apologize when I request reasonable accommodations. No, I won’t applaud someone for finally treating disabled people like we’re fully human, because that’s simply what we deserve.
And no, I won’t hold my tongue or check my anger when your movement declares justice for all but only advocates for abled people. Your justice is unjust if disabled people aren’t included. We know our place, and it isn’t on the margins of your movement. No, we belong, and we’ll fight to be seen.
We just wish we didn’t have to.
Do you have healthcare? Thank a disabled person.
We’re the ones who put our bodies on the line, literally and figuratively, each time the Trump regime tries to kill us. No, I’m not being dramatic. Without access to affordable healthcare, many of us would die.
And? Our deaths wouldn’t be noticed by many of you. How do I know that? Because historically they haven’t been. We’re conspicuous when we show up, but few fellow social justice warriors notice when we’re absent. I’m not even mad about that anymore, just profoundly sad. My anger at being ignored has faded into grief.
ADAPT – a disability rights organization formed in the 1980s – is why we have wheelchair lifts on buses. They refused to stay in their societally-assigned places. They were angry. Protests involved physically blocking buses with their wheelchairs or crawling up the stairs of those buses as bodily demonstrations of how transportation access didn’t yet include us. The Americans with Disabilities Act (ADA) passed in 1990, largely due to the efforts and advocacy and anger of ADAPT members.
In the past couple of years, ADAPT protestors are the ones you’ve probably seen in the news, their wrists often cuffed behind the backs of their wheelchairs and their bodies assaulted as they’re forcibly removed from government buildings. They’ve been fighting for healthcare, not just for disabled people, but for everyone.
If you have access to healthcare, thank ADAPT for what they did with their anger on your behalf. (Also, follow ADAPT on Twitter and elsewhere. Maybe you didn’t know anything about them until 2017. It’s time to remedy that.)
Black Lives Matter, Including Disabled Ones
My three must-follow recommendations of disabled black women are Vilissa Thompson (creator of #DisabilityTooWhite), Keah Brown (creator of #DisabledandCute), and Imani Barbarin (creator of #DisTheOscars). On October 21, 2018, Barbarin tweeted, “Imma get in trouble for this, but IDGAF: Black people, your advocacy MUST include disabled black people. While you may think that we convey weakness and that disabled is the one thing we can’t afford to be, because of medical racism, disabled is the BLACKEST thing you can be.”
As I read her thread, I ventured over to the “what we believe” page of Black Lives Matter, remembering some subgroups of black lives were specifically highlighted there. Queer lives and trans lives are, as are women. Disability only appears in a list declaring that all black lives matter, but no specific action steps or commitments are named to demonstrate being for the lives of black disabled women like Thompson, Brown, and Barbarin. (For additional reading on this topic, Thompson wrote this excellent piece about disability solidary and black lives for the Huffington Post two years ago.)
I’m not here to dismiss #BlackLivesMatter. I’m all in. I want to champion ways in which the intersection of disability and race is done well, like this website of resources for students who are young, disabled, black, and proud, created by the HBCU Disability Consortium. Yet Luticha Doucette’s words are true, published last year in the New York Times: “Black Lives Matter has come under much deserved criticism by black and Latinx disability rights activists for lack of inclusion in their ‘woke’ spaces. We cannot be fully woke if we refuse to acknowledge our disabled brothers and sisters.”
To close out her Twitter thread, Barbarin declared, “We are a huge part of the black community because lack of access to healthcare in addition to local factors and the presence of discrimination while in doctors’ care means that we often aren’t believed about our symptoms or bodies until they become more serious diagnoses. So, get it together, we aren’t going anywhere. We need to be included. Period.”
For more of Barbarin’s insights on this issue, including a link at the end to donate to her Patreon, see this must-read piece: Black People Don’t Have to Inherit Their Ableism. It’s well-written but she also provides the source of where this ableism among the black community in the U.S. originated: white supremacy. It’s all connected when we strive for justice. And I can write this, as a white disabled woman, without being dismissed as an angry black woman, once again because of white supremacy.
Including Disabled Narratives in the #MeToo Movement
The #MeToo movement has focused on the stories of abled women, even though disabled women are four times more likely to experience sexual assault. When disabled women join in discussions of sexual violence, we often experience criticism for distracting from the issue at hand by making it about disability in our narratives. But what else are we supposed to do, if we – as women – experience assaults directly connected to being disabled? Are disabled women not fully female?
The National Council on Disability released a report in January 2018 titled “Not on the Radar: Sexual Assault of College Students with Disabilities.” In it, they cite research showing that 31.6% of disabled female college students were victims of sexual assault, compared to 18.4% of their non-disabled peers. Federal studies on campus sexual assault from the Department of Justice’s Office on Violence Against Women and the National Institute of Justice don’t even include disability as a demographic, while they do include race and sexuality. Furthermore, many college-based sexual violence education and prevention programs are not accessible to disabled students and are staffed by individuals with little to no training about disability.
This should make you angry. It makes me furious.
As Anna Wafula Strike, a British Paralympic wheelchair racer born in Kenya, wrote earlier this year, “As disabled women, we are constantly having to validate our existence, which is frustrating and exhausting. It often feels as though every box is ticked while we, disabled women, are left blank.”
The Women’s March Wasn’t Designed to Be Inclusive
I haven’t been able to attend a Women’s March event because of my disabilities, but I would have shown up if I could have… even though their platform has consistently excluded or insulted women with disabilities. Mia Ives-Rublee is a disabled woman and an Asian adoptee who reached out to the Women’s March organizers to make sure the 2017 event would be accessible. That question led to her becoming the leader of the Disability Caucus for the march.
This is common. When disability hasn’t been considered and a disabled person asks about inclusion, the answer is far too often an acknowledgment that nothing is in place and an invitation for the question-asker to take the lead. I’m grateful Ives-Rublee had the skills and desire for the role (and continues to lead the way), but I’m still angry that neither their platform or plans included us until we pointed that out.
My anger threatened to boil over when the logistics leader for the Women’s March boasted that the event would be “the largest assembly of people with disabilities in U.S. history.” I don’t love how he spun a movement that didn’t include us with their platform to be a disability-focused event, but I don’t even know if he was right about his facts. The annals of U.S. history include very little about disability, after all. Even when they do, the focus is usually on disabled men – with language like “the fathers of the ADA” – as pointed out by disabled women leaders Rebecca Cokley and Rebecca Vallas in this interview.
We’re Here to Stay
I could turn this piece into a dissertation if I explored all the research across justice movements in which disability is an afterthought or not even a thought at all. Solid pieces have been written about discrimination against disabled members of the LGBTQ community, even as one third of LGBTQ people have one or more disabilities. The National Coalition for Latinxs with Disabilities was created by leaders who “shared the experience of living fractured identities (in Disabled and Latinx worlds, respectively).” Lydia X. Z. Brown is an autistic, Asian-American, non-binary, queer law student who never intended to go into law but did so after they observed how much ableism existed in college and even in some autism-focused organizations. The outrage about Kavanaugh’s nomination and eventual confirmation to the Supreme Court heightened with sexual assault allegations, but few took notice at the news that he had ruled in 2007 in favor of elective surgeries being performed on disabled adults without their consent. Disabled child immigrants are treated cruelly and even sought for deportation in hospitals, an issue that isn’t new but is only recently getting national attention. Poverty and employment justice efforts often ignore the higher odds of being poor if you’re disabled or the legality of paying disabled people significantly less than minimum wage, even as little as one dollar an hour. We argue against the anti-Semitism of American Nazi white supremacists, without having learned that the first person euthanized in Nazi Germany was a disabled baby boy named Gerhard Kretschmar, whose death was used as precedent for killing almost 300,000 additional disabled people.
We don’t know because we aren’t taught. We’re not included even in lessons about diversity, as the diversity of ability and disability is usually absent from that education. I learned about the art of Frida Kahlo in a grade school lesson about diversity, but I didn’t learn about her physical disability and wheelchair use until I dug into disability studies.
I also remember learning about Helen Keller in school. The last detail taught, though, was when she learned to say water. I can still picture the movie we watched in class, with a cute white actress saying “wa-wa” over and over.
I don’t remember learning anything about her life after that. I haven’t forgotten; it simply wasn’t taught. History rewrote Keller’s story as one in which she, a disabled woman, stayed in her place on the margins. In reality, though, she grew up to be a socialist activist, included on a list of communists by the FBI in 1949. I wasn’t taught that because it didn’t fit with the narrative in which people with disabilities stayed in the shadows.
News flash: We aren’t in the shadows anymore. We’re here. We’re angry. We’re not going away.
And when you say you stand for justice, we’ll be there, holding you accountable to include us or admit that your brand of justice isn’t just at all.