Accessibility Beyond the Checklist
Making our work more accessible means taking on accessibility as a fundamental operating philosophy—in the 5th edition of This is Not Advice.
Welcome to the 5th edition of This is Not Advice, a non-advice column for premium subscribers of What Works. If you’re already a premium subscriber, thank you! If you’re not, I still think you’re great—and you can read a solid chunk of this column for free. Or, subscribe to get access to full-length columns and podcast episodes.
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Today's question is about a subject I've done quite a lot of work on myself, but one I am absolutely no expert on. It's about accessibility.
Learning that I am autistic at 38 means that I've lived the vast majority of my life not identifying as a disabled person. And in fact, I didn't realize how freaking ableist I behaved for almost as long. Today, I'm pretty quick to disclose my identity as an autistic person. But I'm much slower to identify as disabled—for reasons that will become clearer in a bit.
My goal here isn't to tell anybody how to do accessibility in their work, or the way they manage their teams, or the way they design their products (this is not advice, after all). Instead, it's to probe what we mean by accessibility and how that changes the questions we ask about how we include people.
Okay, here's the question, which comes from a small business owner:
I know there are all sorts of things I can do to make my work more accessible for disabled people—ALT text, multiple delivery formats, closed captioning, etc. But I don't want to just follow a to-do list. How can I incorporate accessibility at a deeper level in my work?
Accessibility work is a type of inclusion work.
And any type of inclusion work starts with a really basic question:
Who am I forgetting?1
When we seek to make our work more accessible, we aim to remember people who, for various reasons, experience challenges accessing certain spaces (e.g., physical, social, intellectual, etc.) The fewer barriers that one encounters and the more spaces one easily accesses, the more likely one is to forget those who run into obstacles to access.
Accordingly, our own identities shape who we forget. Without conscious intervention, we tend to forget about people whose intersections of identities fall somewhere beyond our own on the map of normative experience.
In fact, we might forget people who don't share many of our identities to the point that we stop relating to them as people. Joanne Limburg, an autistic poet, essayist, and novelist, writes that she realized her long-time conception of disabled people were not actually disabled people or their bodies at all. When she thought of disabled people, she thought of "metonymic representations—where the paraphernalia associated with disabled comes to stand for the people who use them."
Disability then becomes reified—a social construction turned into extra stuff. But, Limburg continues, even that reductive and alienating representation of disabled people fails to account for all those disabled people whose "paraphernalia" is hidden.
The Value of a Body
“They saw absence, lack,” writes philosopher Chloé Cooper Jones in her memoir Easy Beauty, ”But I, having only ever been in my body, did not feeling lacking.” Jones was born with sacral agenesis, a congenital condition that affects her pelvis and spine. Her body is visibly different from most other people’s. Early in the book, she tells a story about a biomedical ethics class she teaches—and specifically, a case study the class examines about two deaf parents going through IVF. They have produced four embryos—two hearing and two deaf. The question before the class was whether it was ethical for those deaf parents to only implant the deaf embryos.
I'll let you sit with that yourself for a moment.
Jones recounts how some students in the class argued the ethical dimension of autonomy, saying that, yes, people should have the ability to make their own medical decisions. Others saw it differently, of course. They said that autonomy, generally, is good, but not in this case since it would produce offspring that wasn't "normal." Another student said that while autonomy was an important part of the consideration, so was the potential cruelty of bringing a deaf child into the world. That a deaf person's life is worse than a "normal" person's life.
Finally, a favorite student declared that it was unethical because "it was dangerous to be deaf or disabled." Jones questioned the student on why it was dangerous to be deaf, and he said that crossing the street without being able to hear traffic is dangerous. Jones then gets him to admit that he crosses many business New York streets on the way to school—while wearing headphones that eliminate his ability to hear traffic.
He admits he was wrong and asks, "Why did I think that?"
She responds, "Because you weren't thinking," and then reveals that what she was really thinking was "Because you weren't thinking of a deaf person as a whole person." The student had forgotten that deaf people aren't defined by what's perceived by hearing people as a deficit. Or, as Jones said about her own life, "I, having only ever been in my body, did not feeling lacking." She continues:
Going up the stairs feels like going up the stairs. Walking feels like walking. It looks strange, I guess, to those who watch me. It looks lesser. But I had no reason to feel lesser. That would require lessons, for which I had many willing teachers. People make spaces I cannot enter, teaching me how forgotten I am, how excluded I am from “real life.”
It never feels good to be forgotten.
Being forgotten never makes you feel more whole. I know what it’s like to be forgotten. But more so, I know what it’s like to forget about people you care about—about their experiences, their needs, and their right to be recognized. Whatever I’ve learned about accessibility, I’ve learned because I’ve forgotten people and decided that I didn't want to hurt people like that again.
Most of us don't forget people out of malice or even willful ignorance. We forget people out of carelessness and a lack of curiosity. We forget that how we experience the world isn't how everyone else experiences the world—and we don't even think to ask. We forget out of urgency—stopping to consider who we’ve forgotten takes time we don’t think we have.
We forget that normal is just as much a socially constructed form as race, gender, or disability.
As a stop-gap, accessibility checklists are great tools.
They remind us, hopefully, that people who are engaging with our content, our websites, our programs, or working with us on projects might use screen readers, captioning, or voice recognition software. But checklists only go so far. The W3C Web Accessibility Initiative puts it this way, "Checklists, standards, and laws are important tools to help achieve accessibility—yet sometimes they get the focus instead of the fundamental goal of accessibility: meeting the needs of disabled people in the real world." Check out the whole project for a really excellent resource on internet accessibility!
A checklist can help you make your work more accessible. But checklists, by their very nature, are limited and reductive. Disability, as Limburg deftly portrays in her essay for Aeon, isn't a box you check—even if we constantly run into disability posed as a yes/no question. The thing about disability is that it's an identity that we'll all hold at some point in our lives, given we live long enough to experience it. A checklist approach to accessibility assumes that disability is something that is either on or off, constantly or never present.
And in this binary model, we learn that "non-disabled" is the desired condition. In a sentence I could have easily written myself, Limburg continues, "Like many autistic people—particularly those who, like me, have gone through most of our lives knowing that we were different but not knowing why—I have absorbed the lesson that it is safer to pass if one possibly can, and I’ve grown accustomed to putting in a great deal of exhausting effort in order to do so..." Being open about one's disability just trades one kind of work for another. Instead of the work of passing, disclosing a hidden disability means getting met with comments or squinting eyes that invite one to justify themself and their needs.
This is why check-list accessibility is not enough. What we really need, I think, is accessibility as a fundamental operating philosophy.
Accessibility as a Fundamental Operating Philosophy
Accessibility as a fundamental operating philosophy requires us to make a regular practice of asking who is being forgotten. And once we've discerned who we've forgotten (because nobody is perfect, especially on a first or second pass), we make adjustments to either include the people we’ve forgotten or explicitly recognize that we aren't able to accommodate them.
Accessibility as an operating philosophy looks something like this:
You write an article, you ask who you've forgotten. You design an app, you ask who you've forgotten. You propose a policy, you ask who you've forgotten. You offer a program, you ask who you've forgotten. Considering the often overlooked is just how you roll—because accessibility is your operating philosophy. And once we make the list of all the people we've forgotten (because for those of us with the most privilege, it will be many), we learn what they say they need or want—rather than telling them what they should need or want.
Accessibility as an operating philosophy requires orienting our whole project—whatever it might be—toward inclusion.
We don't make a thing and then make it accessible. We make a thing and use accessibility to make it better. "In the cultural imagination," writes Limburg, "a claim of disability is a demand for something – extra effort, extra attention, extra resources; or for something special – special treatment, special favours, special dispensations. To be disabled is to put other people to more than ordinary trouble." Accessibility as an operating philosophy resists and rejects this.
The social model of disability is core to making accessibility an operating philosophy. The medical model of disability—the model most often portrayed in media—operates by locating the impairment (another problematic concept) in the body of the disabled person. It's a defect to be fixed or mediated.
The medical model of disability makes for drama. If you’ve seen videos of deaf children hearing for the first time after receiving an implant, you seen a great example of this. But that drama comes from an assumption that it’s better for the deaf child to hear than for them to remain deaf. But many deaf disability activists believe that this moral value posture inherently devalues their own experience as whole deaf people with lives that are just as valuable and fulfilling as any hearing person’s life.
The social model of disability, in contrast, locates the problem with the built world and social norms. As a society, we create disability by not accommodating those in different bodies.
To illustrate, consider the humble sidewalk. I live on a main drag in our small town, and pedestrians routinely park along our street to access the downtown a few blocks away for special events or, you know, Saturdays. Anyhow, at both ends of our block, the sidewalk ends in a gentle slope rather than maintaining the same height as the curb. This is called a "curb cut." Today, they're ubiquitous. But before the 1970s, they were rare. Wheelchair users couldn't get around without relying on someone else to help lift them over curbs.
It wasn't until disability rights activists like Ed Roberts and Hale Zukas pressured local, state, and federal policymakers to stipulate certain accommodations for disabled people that things began to change. There's a really excellent episode of 99% Invisible on curb cuts if you'd like to know the whole story. People like Roberts and Zukas believed that not accommodating different modes of movement, learning, or perception infringed on their civil rights. They didn't want to be fixed or cured—they wanted to live independently with their differences.
Now, there are many forms of accessibility built into our infrastructure. More can (and should) be done, but we have come a long way.
The thing about the social model of disability and how it helps us think about the environments we inhabit is that the changes it inspires help lots of people. Curb cuts help parents and caregivers with strollers. Closed captioning helps people like me who can hear well but process dialogue more slowly than written text. And browser features that allow us to increase the text size of a website make it easier for us elder Millennials to keep working the 9-5 and the 5-9 will less eye strain.
This isn't to say that accommodations have to help non-disabled people to be justified. Not at all! Simply that it's a cool bonus that I'm super grateful for.
Beyond the Disability Binary
Accessibility as an operating philosophy starts with remembering disabled people and making it easier for them to participate on their own terms. But it shouldn't end there. And that's because the social model of disability also helps us to see that disability and ability aren't a binary (just like gender and sexuality). Like autism, the disability spectrum doesn't represent varying levels of disability (i.e., high-functioning or low-functioning). It represents different types of needs, impairments, and strengths.
Writing on the Association of American Medical Colleges website, Zina Jawadi describes the disability spectrum this way:
Unfortunately, disability is often perceived this way: A person either has the disability or does not. In reality, disability is anything but binary and instead is highly complex, nuanced, intersectional, and diverse, correlating with a wide range of experiences. ... Furthermore, disabilities can be short- or long-term, transitory or permanent, and can impact peoples’ lives to varying degrees at any given moment. Failure to appreciate the dynamic nature of disability can have profound consequences, not just for the individual trying to navigate their life but for society at large.
Accessibility as an operating philosophy asks us to consider any expressed need as valid and worthy of accommodation.
It also asks us to anticipate needs when we can and provide clear communication channels for anyone who needs an unanticipated accommodation to request one.
People who have “invisible disabilities” or don't identify as disabled should be able to express their desire or need for accommodation. And as workers, business owners, or managers, we shouldn't see that feedback as "needy" or asking too much. Or see the person making the request, as Limburg puts it, as "the attention-seeking, trouble-making, fraudulent scrounger."
This doesn't mean we'll be able to accommodate every need. Or that we should ignore our own needs in order to accommodate others' needs. But we can always affirm the needs and differences of those we work with. And we can reduce the friction associated with asking for accommodation in the first place.
Just Say No to Surprises
Speaking of limitations, we can extend accessibility as an operating philosophy even further. I might call this the Just Say No to Surprises strategy. A lack of accessibility is often hidden in products or programs sold online.
For instance, you sign up for an online class and add the class schedule to your calendar so you can participate live. A couple of weeks into the class, the schedule gets wonky. Surprise! Classes get postponed or rescheduled. You’re not exactly sure what the schedule is anymore. The instructor claims this doesn’t matter because everything is recorded. But it is a problem because you signed up planning to attend live, and you considered the price of the course in light of live participation. The lack of live participation as an option for you now means your needs are no longer accommodated by the program.
Or, maybe you agree to help out with a project outside your normal scope and without your usual work partners. When you check in with the group you'll be working with, you learn—Surprise!—that they work synchronously for extended periods, collaborating via Zoom and Slack throughout the day. You didn't anticipate this because your usual team works independently and asynchronously. This is a problem because the ability to work by yourself is critical to your performance and mental health. You don’t blame them for their very extroverted workstyle, but it won’t work for you.
These may or may not be issues that relate to disability. But they’re accessibility issues, for sure. Critical needs were forgotten. People were forgotten. What one person saw as an easy, breezy change was experienced by someone else (and, let's be real, probably many others) as a barrier to participation.
Eliminating surprises, upping transparency, and using clear and direct language foreground a broader approach to accessibility. They signal a business or individual's care for those who are often forgotten. They provide an open door to those who want to share their needs and ask if they can be accommodated.
The use of accessibility as an operating philosophy poses all sorts of interesting questions about how what you or I might consider "normal" is anything but. When we design an app, website, online course, argument, or any other creative project, we inevitably work with normative assumptions. Our ideal readers, target customers, and use cases are full of normative assumptions. Accessibility as an operating philosophy reminds us to disrupt those assumptions—to remember that normal is meaningless.
As I start to bring this to a close, I want to share a few lines from a novel—The Galaxy, and the Ground Within by Becky Chambers. It's the final book in the Wayfarers series, and it deals with the notion of hospitality in a multicultural, multi-special society. How do you accommodate a group of people who have drastically different physical, social, and emotional needs? Chambers writes:
There was no law that was just in every situation, no blanket rule that could apply to everyone, no explanation that accounted for every component. This did not mean that laws and rules were not helpful, or that explanations should not be sought, but rather that there should be no fear in changing them as needed, for nothing in the universe ever held still.
The same is true for accessibility. The rules and checklists are helpful. But they can't cover every situation, and there is no blanket rule that will ensure your work is accessible to everyone. Instead, we must be vigilant in the way we remember those who are often forgotten.
An excellent and accessible primer on thinking differently about bodies is The Body is Not an Apology by Sonya Renee Taylor. Or, for your listening enjoyment, check out Taylor’s interview with Brené Brown. I also recommend The Invisible Kingdom by Meghan O’Rourke for a look inside living with chronic illness and Strangers to Ourselves by Rachel Aviv for a closer look at the social conditions around mental illness. And Aeon has a great clip featuring a conversation about body politics between Judith Butler and Sunaura Taylor from a film by Astra Taylor about applying philosophy to the material world.