WordPress.com, as my colleague Anne recently wrote, continues to be a space for people to tell their personal stories and amplify their voices. Today, International Day of Disabled Persons, we'd like to highlight a few perspectives and thoughtful reads to raise awareness of the myriad experiences of disabled people.
This reading list is merely a starting point -- be sure to explore more posts tagged with "disability" in the WordPress.com Reader, for example. We hope it introduces you to writers and disability rights advocates whose work you may not be familiar with.
Imani Barbarin at Crutches and Spice writes about life, current events, entertainment, and politics from the perspective of a Black woman with cerebral palsy. Read her reflections on the death of actor Chadwick Boseman, or the anniversary of the Americans With Disabilities Act (which turned 30 this year), excerpted below.
Prior to the pandemic, disabled people were told that the accessibility we needed was cost-prohibitive and unlikely to be implemented only to watch as the institutions that barred our inclusion make those tools available now that nondisabled people needed them. We called for polling places and voting procedures to be made accessible only to watch as politicians shut down polling places in predominantly black neighborhoods. We begged for businesses to be inclusive and accessible to disabled customers only for accessibility to be pitted against small businesses and workers' rights.
And now, unironically, they celebrate.
They celebrate not weighed down by their own words calculating the amount of acceptable death it would take to reopen the economy. They post our pictures celebrating their own "diversity and inclusion" without confronting the fact they only became accessible because of a pandemic and as they loudly push to reopen, they amplify our voices for now with no plan to continue to include the disability community as businesses start to reopen.
I'm angry.
But I am also filled with love and gratitude for my community.
#ADA30InColor at Disability Visibility Project
Founded by Alice Wong, The Disability Visibility Project is a community focused on creating and sharing disability media and culture. You'll find a range of content, including oral histories, guest blog posts, and a podcast hosted by Wong and featuring conversations with disabled people.
If you're not sure where to start, dive into the 13 posts in the #ADA30InColor series -- it includes essays on the past, present, and future of disability rights and justice by disabled BIPOC writers. Here are excerpts from two pieces.
More than anything, however, it was my blindness that allowed me to experience perhaps the biggest impact of this transition. Being able to attend a "regular" school as opposed to the school for the blind and take classes with sighted peers every day, becoming friends with classmates who have different types of disabilities, having Braille placards by every classroom door at a school not intended solely for only blind students, meeting blind adults with various jobs -- ranging from chemist to statistician to lawyer -- was my new reality. Even as a teenager, I knew it was a great privilege to be in this new reality -- America, where there were laws in place to protect the rights of disabled people to live, study, play, and work alongside the nondisabled. At the same time, this reality began to feel like a multi-layered burden as I began to form and understand different elements of who I am: a disabled, 1.5 generation Korean-American immigrant.
"Building Bridges as a Disabled Korean Immigrant" by Miso Kwak
Even with medical documentation on file, disabled BIPOC face added suspicion, resistance, and stigma from instructors, particularly for invisible disabilities. We are also stereotyped in racially coded ways as unreasonable, aggressive, and "angry" when we self-advocate. We are especially heavily policed in graduate and professional programs, and this is apparent in our representation -- while 26 percent of adults in the US have a disability, only 12 percent of post-baccalaureate students are students with disabilities. This is even lower among some ethnicities -- only 6 percent of post-baccalaureate Asian American students have a disability.
"The Burden and Consequences of Self-Advocacy for Disabled BIPOC" by Aparna R.
Alizabeth Worley is a writer and artist with moderate chronic fatigue syndrome. She writes about topics like health and interabled marriage (her husband has cerebral palsy). In a recent post, Alizabeth compiles YouTube clips of beautiful and inspiring wheelchair dances, some of which are from Infinite Flow, an inclusive dance company. Here's one of the dances she includes in her list, featuring Julius Jun Obero and Rhea Marquez.
Ira, the writer at Autistic Science Person, explores the parallels between queerness and disability, and the way other people make assumptions about their body.
I often put down Female for medical appointments even if there's a Nonbinary option, as I don't want to "confuse" them. It's just easier for everyone, I think. I worry about backlash I would receive, or the confused looks I would get if I put down Nonbinary. I think about people tiptoeing around my gender. I can't deal with even more self-advocacy in a medical visit as an autistic person, so it's just not worth it, I think. I'm reminded of the time I carried folding crutches to my unrelated medical appointment. Both the staff and doctor asked me why I brought crutches when I was "walking normally." I had to explain that I needed them on my walk back for my foot pain. Both explaining my disability and explaining my gender -- explaining the assumptions around my body is exhausting.
No matter what, people will make assumptions. Both ableism and cisnormativity are baked into our brains and our society. The things people have to do to accommodate us and acknowledge us involves unlearning their preconceptions. Society really doesn't want us to do that. This is why there is so much defensiveness for both providing accommodations and acknowledging someone's gender, pronouns, and name. People don't want to do that work. They don't want to be confronted with structural changes, the issue of gender norms, and the problems that disabled people face every day. They just want to go on with their lives because it's easier to them. It's easier for them to ignore our identities.
"The first Halloween my daughter could walk was the last Halloween that I could," writes Codi Darnell, the blogger at Help Codi Heal. In a post reflecting on her fifth Halloween in a wheelchair, Codi reflects on change, pain, and the firsts and lasts in her life.
It was all automatic -- all done without realizing the ways these simple acts of motherhood were deeply engrained in my identity. All done with zero understanding that something so simple could be snatched away -- and how painful it would be when it was.
Because a year later I would not hold her hand up the stairs or scoop her up and onto my hip. I wouldn't stand beside her at the door or see her face light up when -- in her big two-year-old voice -- she managed all three words "trick-or-treat". A year later, I would understand the fragility of our being and know intimately the pain of things taken away. But I would still be there.
At Kenyon Review, author Sejal A. Shah writes a personal essay on neurodiversity, depression, academia, and the writing life.
Maybe things would have turned out differently had I requested accommodations, had I known about the Americans with Disabilities Act (ADA, 1990), had I understood my "situation," as my aunt calls it, counted as a disability. The ADA law was amended in 2008 to include bipolar disorder. I began my job in 2005 and finished in 2011. It would have been helpful to know about the law and my rights under it.
I didn't know the laws then; I didn't know them until writing this essay. I looked normal; I passed. Would my career have turned out differently had I been willing to come out (for that's what it felt like, an emergence into a world that might not accept me)? I was certain the stigma of having a major mood disorder would have hurt me professionally. Even had I disclosed my disorder, HR and my supervisors may not have agreed to modifications in my work responsibilities. I would still have needed to advocate for myself -- would still have needed the energy to provide documentation and persist. For years, I had been ashamed, alarmed, and exhausted from trying to keep my head above water.
Project Me is the blog of Hannah Rose Higdon, a Deaf Lakota woman who grew up on the Cheyenne River Sioux Reservation. In "The Outside Looking In," Higdon offers a glimpse into her experience as a child who was born hard of hearing, and whose family had very little access to the support she needed. (Higdon is now profoundly Deaf.)
I look up as my uncle talks to me. I nod. I smile. And I pretend I know just exactly what is going on. The truth is I have no clue what he's saying or why he's laughing, but I laugh too and mimic his facial expressions. I would never want to draw any more attention to myself than necessary. You see, I might only be 5 years old, but I know just how important it is to pretend.
Organizer, attorney, and disability justice advocate Lydia X.Z. Brown calls on the tech industry to carefully consider how policy affects marginalized communities, looking at algorithmic modeling in hospitals, contract tracing and surveillance, and web inaccessibility.
For disabled people who are also queer, trans, or people of color, the deployment of algorithmic modeling increases the risk of compounded medical discrimination. All marginalized communities have long histories and ongoing legacies of surviving involuntary medical experimentation, coercive treatment, invasive and irreversible procedures, and lower quality of care -- often justified by harmful beliefs about the ability to feel pain and quality of life. These health care disparities are exacerbated for people who experience multiple forms of marginalization.
The Spoonie Authors Network features work from authors and writers about how they manage their disabilities or chronic illnesses and conditions. Managed by Cait Gordon and Dianna Gunn, the community site also publishes resources and produces a podcast. Explore posts in the Featured Author or Internalized Ableism categories, like the piece below, to sample some of the writing.
When my neurologist suggested that I get a parking pass, I turned it down.
"I'd rather that go to someone more deserving," I said. "There are people out there who are far more disabled than I am. Let the pass go to one of them."
"You have difficulty walking. What would happen if it was icy or there were other difficult walking conditions?" she said kindly. "This is for your safety."
I nodded and accepted the parking pass, even though I felt it made me look weak. I wasn't disabled enough to warrant a parking pass. I can walk. I didn't need it, I told myself.
"Not Disabled Enough" by Jamieson Wolf
More recommended sites:
Note on header image: Six disabled people of color smile and pose in front of a concrete wall. Five people stand in the back, with the Black woman in the center holding up a chalkboard sign that reads, "disabled and HERE." A South Asian person in a wheelchair sits in front. Photo by Chona Kasinger | Disabled and Here (CC BY 4.0)
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