Editor Ruby here today to talk to you about Disability Pride Month. Did you know it’s Disability Pride Month right now? It is! Editor Andrea wrote a round early in the month about disability pride, and we found it was tough to ask about some of the luminaries in the field because public knowledge about disability activism is so low. Enter: this Friday Know-It-All.

There’s an almost limitless amount of things to talk about when it comes to disability activism, pride, and community. This is in no way a comprehensive overview! See the resources at the bottom to learn more. Here are just a few of the people and concepts we wish we could ask about:

Let’s start with Judith Heumann. You may be familiar with Heumann’s work if you saw the excellent documentary “Crip Camp.” Heumann is often called the Mother of the Disability Rights movement for her long life of activism. She had to sue both to attend school and to become a teacher as a wheelchair user. She led the 504 Sit-In in 1973, which led to the first ever federal protection for people with disabilities: Section 504 of the Rehabilitation Act. A 26-day sit-in at the San Francisco federal building kept this important regulation, which laid the foundation for the Americans with Disabilities Act, from being defanged by the Carter administration behind closed doors. Heumann’s memoir is called “Being Heumann,” which is just a killer pun. Heumann passed away this March, and you can read the tributes to her work and life here.

Heumann was a co-founder of the Berkeley Center for Independent Living, so let’s talk about the movement for independent living. That’s going to take us on a detour through the medical and social models of disability. Ready? Let’s go! The “medical model” of disability is a term coined by social worker R.D. Laing in a 1971 essay, basically talking trash about things as they stood. Within the medical model, disability is understood to be a problem located within the individual person, which can be treated by Western medicine. The only goal is finding a cure to allow the individual to fit into abled society just like anyone else.

In contrast, the social model of disability places the site of disability outside the body – we are disabled by our environments, not our bodies. This phrase was coined in the 1980s by Mike Oliver, a British academic who was the first ever professor of disability studies. In Oliver’s framework, impairment exists in the body, but disability is social. For example: I am very nearsighted, a serious impairment. However, at this point, there’s basically no stigma to wearing glasses (and in fact some people wear them who don’t need them), many options are available, and optometry is… well we’re not going to say any health care in America is accessible, but it’s normalized and most places have at least one optometrist. I am not disabled by my impaired vision, because society has built structures to accommodate a (certain!) range of vision difference. In contrast, a wheelchair user like Mike Oliver is faced with constant social and physical barriers – buildings that are only accessible by stairs, unshoveled or broken sidewalks, doors that aren’t wide enough for a chair, and that’s not digging into the patronizing, hostile, and/or demeaning social treatment wheelchair users often encounter. When we locate disability outside of the body, we have a much wider range of options for supporting disabled people.

(Sidebar: there are critiques of the social model of disability, particularly from people with chronic illness. While the social model views impairment as neutral, people who live with chronic pain may find their conditions to be inherently negative on their face, regardless of the accommodations they’re able to access. Being in pain sucks!)

Let’s get back to the independent living movement! Independent living is grounded in autonomy and the right of disabled people to access the same services and resources as anyone else. I’m actually just going to take a direct quote from Dr. Adolf Ratzka, a German disability rights activist: “Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect. Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own.” The Berkeley Center for Independent Living grew out of activism by Berkeley students who needed a place to live that they could access in order to make the school accessible.

One last idea: let’s talk about the difference between disability rights and disability justice. You may have noticed that almost all the activists named so far are white – the disability rights movement in the ’70s and ’80s (and let’s be honest, through the present) has a real tendency to forefront and be driven by white people whose primary grievance is best understood through a lens of disability. The idea of disability justice was created by the Sins Invalid collective in 2005, led by Patty Berne, Mia Mingus, and Stacey Milbern. Disability justice understands disability as one facet of an intersectional movement for justice. The Sins Invalid 10 Principles of Disability Justice include anti-capitalism, cross-movement and cross-disability solidarity, collective access, and collective liberation. Just a few examples of how this shows up! The experience of a wealthy wheelchair user who can afford to have their home retrofitted to meet their needs is going to be wildly different than someone who depends on Supplemental Security Income to survive and can’t own more than $2,000 of assets, ruling out owning a home. Roughly half the people killed by police in the United States have a disability. Black children are much more likely to be diagnosed with oppositional defiant disorder, while white children are more likely to be diagnosed with ADHD, resulting in a huge disparity in the types of treatment, services, and being put on the school to prison pipeline. That’s just a few examples! Disability justice takes a more holistic vision of how we can rebuild a society that works for every body, rather than trying to integrate disabled people into society as it exists.

I could talk about this all day, but instead I’m going to leave you with some opportunities for further reading:

Read everything Leah Piepzna-Samarasinha has ever written, starting with “Care Work”
Check out the #StaceyTaughtUs syllabus, honoring the life and work of Stacey Park Milbern, who died after her medical care was delayed by COVID in May of 2020
If you’re into fashion, check out Shelby Lynch’s work on reclaiming control over her life through fashion
“Exile and Pride” by Eli Clare is a foundational text about the intersection of disability and queerness
This interview with Keith Jones and Leroy F. Moore digs into the creation of Krip Hop Nation

Happy Disability Pride Month! And that’s a small fraction of what there is to know-it-all today.