Pro-choice: New visions

Part 2 of 2

Read Part 1 here.

When I think about pro-choice, reproductive justice and parenting for people with disabilities, I think about all of the freedoms of choice that we need to get there. I consider all of the choices that many able-bodied individuals take for granted, but are still contested for disability communities. I am trying to reckon with the ways that we are still at the margins of inclusion in the reproductive justice movement, even though that movement’s goals are central to our needs. 

There are more than four million parents with disabilities in the US, yet their positions are precarious due to government intervention. Pacific Standard reports that “nearly one in ten children in the US are at risk of being removed from their home by a child welfare agency simply because their parent has a disability.” These parents often have contact with child welfare systems early, and in turn are at greater risk for future referrals and cases. Furthermore, child welfare systems and the experts they work with often have little knowledge in how to work with disabled parents.

At the heart of the matter is this: our society still holds deep-seated beliefs that disabled people cannot parent adequately, or can only do so with an “able-bodied person to validate the decision for children or sign off on it,” as activist Keah Brown writes in Glamour magazine. Though Brown doesn’t plan to have children, she insightfully connects her concerns to disabled individuals who do. The commonality, of course, is choice.  Anti-violence campaigner Nicole Lee reports that in Australia, things are much the same. For disabled communities, reproductive choice is not uniformly distributed or respected, as Lee experienced first-hand when she received no counseling or after-care during her abortion, but had her capacity as a mother routinely questioned during her second pregnancy.

In 2017, five mothers with intellectual disabilities filed suit against New York City’s Administration for Children’s Services, which had taken their children from them. As I read about the suit, I was struck by one of the plaintiff’s reflections: “I want the workers to know that I really can tend to what I have to do, at my pace. Workers tend to rush things and assume things.” 

In her words I heard echoes of “crip time,” which no able-bodied ACS worker would likely understand. Is pro-choice, then, the freedom to live, and parent, on our time?

I believe the life of lawyer and activist Carrie Ann Lucas exemplifies how interconnected vision of choice are for people with disabilities. Lucas was a disabled woman who worked to protect and expand freedoms for parents with disabilities. She was one of two lawyers in the United States who litigated individual cases to protect disabled parents’ rights. She was also deeply engaged in organized protest (through ADAPT), public policy work and community activism. She was an adoptive parent to four children with disabilities. 

Ultimately, it was a lack of choice that killed Carrie earlier this year. In 2018, her primary insurance plan declined to cover the medication she needed for a lung infection, substituting it with a less effective medication. This caused severe complications, multiple hospitalizations, loss of speech and eventually, her death. 

You can read more about Carrie’s life and work here.

I think choice, and everything it contains--trust, autonomy, equity, interdependence, access--is our most urgent proposition. 

Forgotten, Yet Seen

It felt like my chair was pulled out from under me yesterday when I found out that Kyle Shenandoah, a friend and local community advocate, died last week. Kyle was a lifelong resident of a small section of southeastern Philadelphia called the Forgotten Bottom. Over the last several years, he continually sought new avenues to support his community. As his obituary reads, his goal was to “make his neighborhood...seen.” His legacy has much to teach those of us who are working to make disabled communities, and other marginalized communities, seen and included. 

It is imperative to know your community’s history.

In his Ted talk, Kyle recounts his desire to change the name “Forgotten Bottom” to something else, and how he set out to survey neighborhood residents about their opinions. He assumed that other people also disliked the name, but he quickly learned that folks actually appreciated it for a variety of reasons. He also found out that the name had an important, decades-long history. 

Listening closely to the history of those who have come before us, and have been part of the community for longer than us, is essential. In order to understand where our communities are going and how to lead them, we must understand how we arrived here today. We cannot make assumptions based on our own needs or preferences.

Consider community involvement every step of the way.

Kyle’s loss hurts deeply because he was so community-centered. He knew that change required understanding community needs, close listening and consensus-building. He carefully used his power as a young, educated Black man with social capital in a historically underserved and, well, forgotten, neighborhood. The questions that Kyle pushed urban planners and developers to ask about new initiatives are ones that we as stewards of disability community should consider:

Does it really benefit the community?

Does the community know about it?

Is there a conversation with the community afterwards?

As we work to create a world that is radically accessible to disabled people, these questions will keep us accountable. As Kyle said, “listening is always before leadership.”

Change requires long-term investment.

One of the most exciting projects that Kyle executed was the creation of a new bus route, SEPTA Route 49, that connected his community to other parts of the city, including major transit hubs. With this project, Kyle helped to ensure meaningful access for his neighbors. Yet this project took two years to plan, and two additional years to partner with community members to consult and refine. Kyle’s long commitment brought the project to completion. 

In the same way, many of the changes we seek to make require persistence, even though access for disabled communities feels (and is) urgent. When dealing with matters of inclusion and equity, transformation is slow. Kyle was an example of patient endurance.   

We can make change by acting as a conduit between community and big institutions.

Kyle provided many direct services to his neighbors, such as a Thanksgiving meal drive and yearly job fairs. But I most admire the way that he translated community needs to policymakers, developers and others who held power over his neighborhood. Kyle was able to seamlessly navigate between the Forgotten Bottom and the institutions of Center City. 

Kyle’s example illustrates to me the great impact of advocating with, not for, community. Serving as a leader with the time, ability and social capital to articulate community needs to policymakers is vital work. It may not always be the most visible or exciting, but it brings lasting change. 

As I look at Kyle’s image and hear his voice online, it is unfathomable that I won’t see him at another community hearing or run into him in the park. I don’t know how to process the fact that the very things we are fighting to improve in our movements--in Kyle’s case, safer streets and better traffic patterns in the Forgotten Bottom--are often the things that kill us. It is profoundly unfair. 

If you’re interested in contributing to Kyle’s funeral costs, you can do so here.

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.

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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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