Pro-choice: New visions

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.

Learning from a radical past as we design an accessible future

My article on how technologists can apply lessons from disability activism to their work was featured yesterday on Technically Media. You can begin reading the article below, then click through to read the entire piece of Technically’s site.

While “accessibility” may bring to mind codes and standards, I’d like to invite you to consider something different: an exciting, radical history of activism.

Disabled communities have long worked towards inclusion in public space. Here’s what we can learn as technologists as we build the public space of the 21st century.

Click here to keep reading on Technically.

On our time

On the days when the hot, humid air weighs on my chest, or when my brain is exhausted after a long meeting, I walk slowly. My pace is measured and I feel other people rush by me. In the beginning it was even slower, and I remember wondering--I used to walk that quickly? 

I am moving on my time. On crip time.

(If you are not familiar with the term “crip,” pause here and read more.)

“Time is foundational in the production of normalcy,” according to feminist-disability scholar Alison Kafer, who writes on futures for disabled people in Feminist, Queer, Crip. What about those of us whose bodies and minds deviate from the norm?

I think about crip time when my gait and speech slow. I feel myself in its liminal space when I can’t find my words. I notice it in the way I am constantly planning for and managing the near future, while in the now. Will that party be too loud for me to attend? My friend suggested we meet at this restaurant, how do I propose a different one that is quieter or less crowded? I am mapping the waters of the future while sailing the present. Sometimes, I am still feeling the rocky currents of the near-past.

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Pushing back against the rising tide

A common refrain in accessibility efforts, both online and in physical spaces, is that “a rising tide lifts all boats.” I’ve said it myself, in many client meetings and in public presentations. The idea is that designing an accessible space or website makes it better for all users. In the case of technology, an accessible website is typically easier to navigate and more simply designed. In physical spaces, the way that curb cuts, ramps and other access features benefit people without disabilities has been well-documented as the “curb cut effect.” Sounds great, right?

But if you peer past the veneer of the rising tide, what are technologists and planners really saying? It seems that the message is “make it accessible because it’s good for people with disabilities and everyone else.”

What if equity for people with disabilities in public spaces--online and off--was reason enough?

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The same you

Earlier this year, actress Emilia Clarke, famous for her role on Game of Thrones, publicly shared her experience of surviving two brain aneurysms. In a first-person article in The New Yorker and follow-up interviews, she recounted exercising with her trainer one February morning in 2011, then suddenly feeling as if “an elastic band were squeezing [her] brain.” Her aneurysm led to a stroke. Clarke had no time for medical emergencies and brain damage. She was busy riding the wave of success from season one of Thrones. Clarke went public with her story to launch a foundation funding research into rehabilitation for brain injury and stroke for young people.

The foundation’s name? Same You.

I paused as I read the foundation’s name and mission on their website. I reflected on all of the longing and optimism wrapped up in those two words.

Same You.

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I'm done with rehab: Moving beyond cure

No one sent me to rehab, as the Amy Winehouse song suggests.

After my accident, I sent myself. Scared of the changes rapidly appearing in my body and mind, I asked for help.

I was methodical, attending speech therapy to address my slowed, foggy cognition, my sudden inability to focus and my stutter. After “graduating” from speech I moved on to physical therapy to remedy my shaky balance and consistent headaches. I wanted to feel strong again, to hike again, to resume my confident stride on cracked Philadelphia sidewalks. Finally in the summertime I began vision therapy to retrain my eyes, which, terrifyingly, were unable to hold focus and contact the way they were before. I didn’t want to be socially “weird” or “awkward,” I told the optometrist.

In short, I wanted to be me again. And I was counting on rehab to make it happen.

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Legibility, visibility: Envisioning meaningful inclusion online

This is the conclusion of a three-part series on legibility, visibility and access for individuals with disabilities. If you haven’t had the chance to read parts one and two of the series, I advise that you scroll back and start there.

As Aimi Hamraie writes in their work Building Access: Universal Design and the Politics of Disability, “access to public space is a litmus test of freedom.”

The Internet is our public space and built environment for the 21st century, much like our buildings and streets. It is where we socialize, learn, shop, apply for jobs and, increasingly, do those jobs. In the same way that accommodating people with disabilities in the physical environment has focused on adhering to standards (primarily the Americans with Disabilities Act) and serving those with legible disabilities, I assert that we are replicating this same “compliance regime” (Hamraie, Building Access) on the web.

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Legibility, visibility: "Disability made manifest"

Part 2 of 3

This is part two of a three-part series on legibility, visibility and access for individuals with disabilities, both online and off. If you missed part one, you’ll want to scroll back and begin there.

Since my accident in late 2017, I have continually wrestled with how to assert the differences that have felt overwhelming in my brain and body, but are often imperceptible to the naked eye. At times the changes have been noticeable in my slowed speech and gait, my stutter or my poor balance. But in most circumstances, especially for those who didn’t know me well before or met me after the accident, the needs that felt alarming inside of me were truly invisible. Though I didn’t have the vocabulary for it yet, I was trying to navigate illegibility.  

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Legibility, visibility: Who gets access, online and off?

Part 1 of 3

When you think of “disability,” what image comes to mind? A wheelchair user? A person using a white cane to support a visual impairment? Most of us think of individuals exhibiting difference that we can immediately perceive with our five senses. This is not an accident. Our modern architectural and sociological systems have conditioned us to associate disability with “legible” devices like wheelchairs or canes that (crucially) facilitate access to buildings and streets, asserts disability scholar Aimi Hamraie. This is most evident in the the International Symbol of Access (ISA), which was adopted in the 1970s.

To be clear, this legibility in our built spaces has been hard-won through work by disability activists. But the work is not over.

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Web accessibility: It begins at your front door

Hello there. I’d like to inaugurate this as a space to reflect on accessibility and inclusion. I write from the lens of a woman who is researching and designing for the web every day, but always bringing my own experience with disability to the table. And I know that what happens on the internet and off have everything to do with each other.

If you are thinking about web accessibility as an issue confined to your screen, I invite you to take a step back from your computer. Way back. All the way back to your front door.

Too often designers and developers view accessibility as a mere checklist or a set of standards to be met. I frequently observe an intense focus on conforming to the Web Content Accessibility Guidelines (WCAG). While the WCAG have created a common standard that improve the web experience for many users with disabilities, they also fail to push technologists to ask bigger questions about disability and access in our products and our industry. They excuse us from examining who can get through the door and contribute to the work we’re doing. I want to use this space to change that conversation.

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