Part 1 of 2
I was in a bar with other young disabled activists at this year’s Philadelphia Disability Pride when the conversation turned to the event’s sponsors. Unlike Pride Month, which is dominated by banks, beverage companies and fashion retailers, Disability Pride is sponsored primarily by health care organizations. The discussion focused on one sponsor in particular, Inglis House. Inglis started as an institution for “incurables” and now seeks to “maximize the independence of adults with physical disabilities” through day and residential services.
“I’m pro-choice,” said one person. “People should be able to choose that environment if they want, but it should be informed choice.”
As I listened, I was struck by my colleague’s use of “pro-choice.” As a long-time advocate for abortion rights, I have identified with the term for years. Never before had I considered what the framework offers disabled people.
Fundamentally, choice means agency over what happens to our bodies, minds and futures. For people with disabilities, these rights are precarious. The legacies of eugenics, sterilization and systematic institutionalization are close at hand.
And yet I think that the very things that underscore the movement for reproductive justice--access, choice and autonomy--are also what underpin modern disability rights and justice movements. Choice is the through line.
After World War II, many disabled veterans needed prosthetics, but faced few options. Initially, veterans were forced to accept a “one-size fits all” approach, without consideration for individual needs. In Accessible America: A History of Disability and Design, design scholar Bess Williamson shows how disabled white, male veterans worked with Congress to invest in the research and design of a variety of options for prosthetics. These veterans went against the prevailing narrative that they should “adapt to” or “overcome” their disability and accept the narrow options given. They “assumed that veterans could and should choose among a range of choices--like suits hanging in a store” (Williamson, Accessible America). They set an early example for advocating with government officials for choice.
That advocacy moved into more expansive realms in the 1960s, with the rise of the Independent Living movement. While choice in how disabled people receive care, and who provides that care, has been a long-time site of activism, this movement propelled that activism onto the national stage. Disabled student-activists in Berkeley, California “embraced a notion of independence in terms of being free to make life decisions for themselves, particularly in reference to living on their own rather than in institutions” (Williamson, Accessible America). They put forth a radical new vision: that “physical design was always related to a larger vision of independence for disabled people” (Williamson). They also formed relationships with their attendants that demonstrated interdependence and negotiation of power. In all of their work, members of the Independent Living movement centered the urgency of choice and access.
Decades later, disabled activists are still negotiating agency in care. ADAPT, a national civil rights organization for people with disabilities, seeks to pass the Disability Integration Act (DIA), which would expand choice in care services and supports. The DIA would ensure that more people are able to receive care at home, as opposed to in institutions, building on Congressional findings that “virtually all people with disabilities can live in their own apartment or house with adequate supports.”
While policy work moves along, individuals must negotiate personal choice in the interim. In their book Care Work: Dreaming Disability Justice, activist Leah Lakshmi Piepzna-Samarasinha documents how queer wheelchair users access safe attendant. One friend has organized an extensive network of friends to support her daily needs, while another prefers to hire vetted attendants.
In their stories, I hear echoes of World War II veterans emphasizing that a “one size fits all” model won’t work. I think about the veterans who were never offered prosthetics under the GI Bill--namely, black and women veterans--and how their needs might have also been different. I consider that as we pursue a framework of choice, we must center the communities among us that have repeatedly been denied it.