Decoding Accessibility and Sparking Wonder
Questions about accessibility are really questions that wonder about who gets to be together and how they gather.
At a recent speaking gig, my handler asked me to hold out my wrist. When I did, she flicked a reflective neon slap bracelet on my outstretched arm. My inner child of the nineties thought that was pretty damn cool. “This is just in case security stops you later,” she told me as she escorted me to the backstage area.
That bracelet indicated to anyone on the lookout that, yes, I belong here. I have access to this space.
The “backstage pass” is a classic form of access control.
It exists for very good reasons. If anyone and everyone could move freely backstage, performances would be interrupted, performers might get stressed out, and chaos would ensue.
Who gets granted that backstage pass (or very cool neon slap bracelet) is pretty straightforward. There’s a list of people who qualify based on their relationship to the performance or performers, and everyone else doesn’t qualify. And sure, sometimes you can buy your way to a backstage pass.
When it comes to backstage accessibility at a concert or conference, you’re either on the list, or you’re not. Either you qualify, or you don’t. But few social spaces are so clear-cut when it comes to access. Yet, the question of access is embedded in every social space. Anywhere there are two or more people, there are implied questions (and answers) about who belongs and who doesn’t. This is true online as well as offline.
Typically, the "question of access" online is considered in technical terms.
How does this website need to be designed? What ALT text is appropriate for this image? Are captions available for this video? And obviously, knowing the technical aspects of accessibility is important.
But if accessibility stops at the technical requirements, we forget that there are people on the other side of those checklists and manuals. We forget that even the most rigorous checklist can’t account for everyone and their experiences. We forget to ask critical questions that seem obvious when it comes to a backstage pass but are readily dismissed when it comes to most other social spaces.
This is the third installment in my five-part series on decoding empathy. In the first installment, I examined what empathy actually is and how we’ve come to think of it as a necessary skill for work despite our inability to define it. In the second installment, I talked with Chloé Nwangwu about recognition, visibility, and brand strategy.
In that previous piece, I mentioned disability studies scholar Tanya Titchkosky. Today, we’ll dig deeper into Titchkosky’s work, including what she calls a “politics of wonder,” and we’ll learn from accessibility educator Erin Perkins.
Keep reading or listen on the What Works podcast.
The Intersection of Access & Empathy
Accessibility doesn’t arise from a checklist of technical requirements or types of people. Accessibility is the result of a “complex form of perception,” argues Tanya Titchkosky in her book, The Question of Access.
I'd call that complex form of perception empathy. Not only knowing but actively perceiving the world as full of people who are not you and may not have the same access to social spaces that you do.
Considering access as a form of perception makes it easier to see how we forget to wonder about who, what, why, how, when, and where of access. Even for a disabled person, perceiving access (or lack thereof) is learned. "Growing up, I was very fortunate to have parents that really advocated for me," explains accessibility educator Erin Perkins, who is deafblind, "I always had everything provided to me access-wise—interpreters, captioning, all of it."
Erin started her career as a graphic designer. Design has been a passion for her since high school. But she got laid off from her graphic design job in 2017. As she started to regroup, Erin decided to try her hand at working for herself.
In the process, she realized that there were all sorts of people a new business owner could learn from online. "I started trying to learn from them," she tells me, and quickly realized, "none of their videos were captioned. None of the stuff is." When she reached out to see if they could accommodate her learning needs, they told her that they didn't know how.
"I've invested my money into this, and yet, I can't get the same experience as the person that's hearing," Erin recalls.
In effect, Erin had purchased a backstage pass—but still wasn’t able to access the backstage.
Erin figured that if it was just a knowledge issue, she could learn and then pass on that knowledge to those who needed it. She soon discovered that making accessible content wasn't straightforward. She thought to herself, "If I have trouble understanding this, how can I expect any other small business owner to understand this?" And with that, she started to shift her work into accessibility education. Her goal was to make accessibility as easy as possible for other small business owners.
This strikes me as an incredibly generous response to being unrecognized. I asked Erin if she ever responded to lack of access with, let’s say, stronger feelings—and sure enough, she had. Sometimes, her cynical internal response would be, "Have you never met a disabled person before? If you haven't, that's a problem. Your world is very closed." Anger, frustration, annoyance—she felt it all.
When it came to people who ran bigger companies with teams of people to help, she interpreted their helplessness as not caring about her or other disabled folks. But with smaller businesses, especially those where one person was doing everything, she could understand their challenges.
Recognizing Barriers to Access
Erin's incredulous question, "Have you never met a disabled person before?" struck me as important. I'd venture to guess that everyone has met a disabled person. But that doesn't mean that they recognize the person they met as disabled.
"A lot of us were raised, especially Millennials, with the vision that a person with a disability is in a wheelchair," Erin explains. After all, that's the literal symbol for disability. But being a wheelchair user is only one way disabled people show up in the world. As an adult, Erin would often meet new people who would tell her that they had no idea she was deaf. "How [is] a deaf person supposed to look?" she'd think.
"Not all disabilities are visible," of course.
In fact, the Centers for Disease Control (CDC) just released data showing that 1.5% of all adults in the US are experience "significant activity limitations from long COVID." That's more than 3.5 million new people potentially dealing with an invisible chronic illness and disability since the advent of the pandemic. Add to that conditions like dyslexia, chronic pain, traumatic brain injury, or vertigo (and many more), and it's clear that disabled people are a diverse bunch with varied needs.
Erin tells me that part of life as a disabled person is education. "It's explaining to people that you cannot... [judge] a person by the way they look," she explains. Especially today when our social experiences are often mediated through devices that don't allow us to see (literally and figuratively) the whole person. "Because we meet a lot of people virtually now, you would not know if they had a disability unless they explicitly told you," she points out. "Somebody could have an amputated leg, and you would never know because you're looking at them on the screen."
A Politics of Wonder
That's why we need what Tanya Titchkosky calls a politics of wonder. She writes, "It is possible to nurture a desire to wonder about the everyday act of perceiving disability." In the process, we start to question our assumptions about what's "normal" and who is "naturally" excludable.
Cultivating a politics of wonder sounds poetic—but its implications are radical and material.
If your body and cultural markers resemble the mythical norm, there are probably a lot of forms of access that you take for granted. Further, you probably assume that others have a similar level of access to yours—unless there is ample evidence to the contrary, such as the presence of a wheelchair.
Choosing to wonder calls all of that into question.
You wonder, as Titchkosky puts it, "who is together with whom, how, where, when, and why?" You might even start to wonder how your access to social spaces varies. Choosing to wonder about the nature of access and what it means changes everything.
I often wonder about how much more someone has to work—how much more effort they have to expend—to have access to a space or relationship. To play off Chloé Nwangwu's terminology from the last installment, what is the inaccessibility tax that people pay to be here?
"I am always doing more work than a hearing-abled human being," Erin tells me. She often opts not to wear her hearing aids in public because "the world's noisy, who wants to hear all of this stuff?" I couldn't agree more. But that means she also has to interact with the assumptions of the hearing public. First, they assume she can hear. Fair enough. But then she'll indicate that she's deaf—but she can't speak it out loud (even though she could) because the moment she does they assume she can lipread. On top of all that calculus, she's educating strangers in real-time.
When she was in Austin, Texas recently, she got to experience life with a little more access. Austin, she explains, has a "pretty big deaf community" which means there are more people ready and willing to communicate with deaf people on their own terms. "I would order my food, and then the person behind the register would [ask] me a question, and I'd [say] 'Oh, I'm deaf,' and they didn't even flinch," she recalls with a smile. "That was the most amazing part, they just quickly adapted. And they didn't put that burden back on me."
Oh, this is how it feels—the burden's not placed on me.
That's just it—choosing to wonder, to question the who, what, why, and how of 'how of we come together,' helps to balance the burden. Instead of a lucky, "normal" few floating through life with ease, everyone can pitch in and do their part to make our social spaces as accessible and inclusive as possible.
Access & Entrepreneurship
So, if you're a small business owner or independent worker who wants to choose wonder and share the workload, what do you do? Erin tells me that the first thing she recommends is to "get out of your own bubble." While you might have created your product or service for someone who experiences the world in a way similar to you, you need to take a step back and ask, "What about people [who] are not like me?"
Erin says most people who consider buying from you won't speak up and tell you they have a disability. By getting out of your bubble and meeting (or following) people who experience the world differently, it'll be easier to anticipate needs you wouldn't have considered otherwise.
Erin also recommends starting with how you approach social media, especially if that's where people find out about your business. Plus, social media apps are increasingly making accessibility tools easy to use and built into the user interface. That means adding things like captions, transcripts, and ALT text is much more straightforward than it used to be. Other techniques, like describing visuals in your text posts or using camel case hashtags (i.e., capitalizing the first letter of each word, as in #PhilosophyOfWork), are simple to utilize.
Checklist accessibility isn't really accessibility at all—but that doesn't mean the items on the checklist aren't important. They are. And what's more, those checklist items—ALT text, camel case hashtags, captions, transcripts, etc.—can be tools for expanding our perception and inspiring wonder. The same goes for other tools like introducing yourself with your pronouns or acknowledging the land and its people. These are tools that remind us to wonder about who is gathered together and who is excluded.
Open-Minded Empathy
Part of my thesis for this series on empathy is that "it's not empathy if it's a projection." Often, our performance of empathy takes the form of knee-jerk responses to what others share about their experiences: "I know how you feel," or "Ugh, me too!"
"The way I practice empathy," Erin tells me, "is not necessarily trying to ... relate to how that person feels because there's going to be a point where I'm never going to get that feeling." Sometimes, the external indicators of empathy (e.g., "I totally get it") make someone feel less understood rather than more.
This is something I regularly experience when I share my identity as an autistic person. I find that people often take my honest descriptions of my social experience as hyperbole (when, if anything, I'm underplaying my description to sound less odd!). Because they assume I'm exaggerating, they'll tell me that they're "the same way." I'm sure some of them are. But most aren't—our experiences are different and that's okay. Since it's very difficult to communicate my lived experience, I just want to be taken seriously when I make that effort.
Erin explains that she practices being open to learning what others teach her about their own experiences. "I feel like we find that balance with each other," she reflects.
Empathy requires curiosity. It requires wonder. It requires recognizing all of the different ways people feel, experience, and relate to the world.
The Spark of Wonder
If your circle of recognition shuts down your curiosity and wonder instead of sparking it, it's time to expand that circle.
"In the business world," Erin explains, "it can be challenging ... to find and make friends with all kinds of people." But you can follow people who experience the world differently from you. You can ask others who you should connect with. You can speak out about your commitments and values in a way that invites people to share their experiences with you.
In fact, I met Erin through Ash Wylder, who found me through
. And Ash also introduced me to an upcoming guest in this series, Leonie Smith. I met Chloé Nwangwu through Pam Slim. The list could go on and on."My network is constantly growing," Erin tells me, "because of the desire I have to meet and get to know as many people as possible." Erin encourages others to "step out" and remember "People don't bite, we're all good, we all want the same thing."
Mistakes will be made.
"I put my foot in my mouth," admits Erin. "We all have to be willing to admit that [we] made mistakes, move on, learn from them, grow from them, and [our] world will get that much better."
Erin's email signature contains the reminder, "It's progress, not perfection." She wants others to know that you don't have to be perfect to meet people who are different from you. You don't have to have all the right language and say all the right things. There is no prerequisite for expanding your circle of recognition, so long as you care and come prepared to learn from your mistakes.
Practicing Self-Empathy
I think empathy is really all about progress, too. Empathy isn't something you have or you don't. It's a complex form of perception, one that we can expand, deepen, and hone.
When Erin says she isn't perfect and that it's progress, not perfection, that matters, she reminds us that we all have something to learn about access. Tanya Titchkosky refers to this as our "half and half" nature.
"We are all, in some sense, half and half," she writes, "a part of and apart from where we find ourselves." Half in the circle of recognition and half out of the circle of recognition. And so part of the lesson I take from my conversation with Erin as well as from Titchkosky's work, is that we need to cultivate self-empathy.
Maybe self-empathy sounds like an oxymoron.
But self-empathy acknowledges that there are parts of ourselves that we treat as other, that we don't fully understand, that we don't have full access to. Self-empathy recognizes that there are parts of ourselves we deny or disparage simply because they remind us of our distance from the mythical norm.
I don't know anyone who hasn't molded themselves to fit a little more comfortably into the containers that school, work, family, and community have provided for us. There are parts of ourselves we hide, parts we disown, parts we fail to explore. Society teaches us not to wonder about our own identities and the ways those identities make it harder to access certain spaces. We learn to perceive our differences as deficits rather than facts that deserve accommodation.
A couple of years ago, I read a paper by sociologist Catherine Tan on the self-narrative impact of late autism diagnosis. In this paper, she coins the term "biographical illumination." Biographical illumination is the process by which a diagnosis like autism reshapes one's self-narrative from "What the hell is wrong with me?" to "Wow! It all makes sense now!" Before biographical illumination, many of us spend precious time and energy on camouflaging our personal distress—on top of the inaccessibility taxes we pay to "fit in."
Biographical illumination acts, in some ways, as a permission slip for "coming out"—to stop trying to pass as "normal" and recognize how we're just normally ourselves. In a 2001 paper, Titchkosky reflects on the process of "coming out" disabled. She remarks:
So compelling is such passing that one does not only come out to others, but one must come out from under the seductive power of an unquestioned sense of normalcy—come out for one's self.
As I think on my own biographical illumination, the challenge from Erin to expand our circles of recognition, and Titchkosky's idea of coming out for ourselves, I can't help but wonder how many more people than we can realize bear the burden of ignoring or denying their challenges with access and belonging.
I wonder whether coming out for ourselves might be a necessary part of a move toward radical accessibility and abundant accommodation. Maybe we need to ask ourselves hard questions about the ways we've been denied access and wrestle with the answers.
Practicing curious, wonder-filled empathy can and should lead to practicing curious, wonder-filled self-empathy. Wondering about others encourages us to wonder about ourselves. Taking on some of the workload of access for others reminds us that others can lend us a helping hand, too. When we see others for who they are on their own terms, we have more capacity for seeing ourselves on our own terms.
The next time you're designing an event, gathering a group of friends, or posting to social media, remember that accessibility isn't a checklist. It's not a set of answers. It's a question.
Who is together with whom, how, where, when, and why?
Ask yourself the questions. And let yourself wonder.
Learn more about Erin Perkins, book your own accessibility audit, or join her Successible community.