The accessibility community is not the disability community
by Matt May
Happy Monday!
Global Accessibility Awareness Day (GAAD) was last week. Those of you from the accessibility side of the house will surely have seen an uptick in events and postings, particularly by larger companies and agencies. This year there was even a White House event for GAAD.
If you represent accessibility in any organization, there are a few PR occasions for you to rise to: GAAD, the anniversary of the Americans with Disabilities Act on July 26, and (National) Disability Employment Awareness Month in October, for example. The larger the organization, the more likely you’ll be called upon to write a blog post—or perhaps have one written for you. (I chose the former, for the record.) Now companies are moving past that into big events and videos, clearly organized by public relations teams and media agencies. And I'm noticing the vibes are a little off.
I think GAAD has been a net positive for disabled people (and, full disclosure: I’m close friends with one of the founders). But now that it's one of those PR-calendar events, I think the number of posts, ads and panels centering corporations in a bid for goodwill outweigh those that actually center disabled people's lived experiences. I started feeling that way when I was working in a role that overlapped with those PR goals, and having to do it ended up splitting my identity into two conflicting halves.
Okay, brace yourselves. It pains me to admit I watched Game of Thrones, but I have to cop to it because there’s an important message in what certain people saw in it.
Once upon a time, on a social network that is now a shadow of its former self, I tweeted the following:
Accessibility pro tip: If your timeline is not flooded with "Bran has a wheelchair!" tweets, you are following accessibility Twitter and not disability Twitter. Consider branching out.
(Or possibly your friends don't watch GoT. But that's way less likely.)
When the first episode of Game of Thrones’ eight and final season came out, Bran Stark, injured in a fall at the very beginning of the series, was seen sitting in a wheelchair. (Having been to Italica in Andalusia, the site of GoT’s final scene, the utility of such a chair would be questionable, but whatever.) At the time, I noticed an eruption at the time in people and hashtags I followed being activated by the chair. Amazing! Such representation! Heart emoji! But, again, Bran (unlike the actor, Isaac Hempstead Wright) was disabled the whole time. It just wasn’t relevant, I guess, or official, until he was treated with the literal representative icon of disability.
Disabled communities’ relationships to GoT over its run could best be described as “it’s complicated.” There’s a whole lot to process about the show, across all identities. On the one hand, GoT is gratuitously… you name it: violent, sexist, racist, classist, ableist. Its dialogue, much like its plot, cut down even major characters indiscriminately. And on the other… well, Tyrion Lannister, played by Peter Dinklage, is a person of short stature, and effectively the main character—a far cry from typical portrayals for novelty or comic relief. Hodor, disabled by a seizure (caused by Bran!), and Theon Greyjoy, tortured mercilessly and having PTSD throughout, are two of the great heroes. And on the other other hand, there’s the common literary trope known academically as the “supercrip,” wherein a disabled person (like Bran) is only remarkable for possessing a superpower (like out-of-body experiences).
It’s this split that I want to point out.
On one side, there is an accessibility community, made of disabled and non-disabled individuals, who are focused primarily on interventions nominally meant to improve the state of things for users of an organization’s products or services.
And on the other, there is the disability community, composed exclusively of disabled people, who have to interact with disability constantly, and are largely focused on getting through their(/our) daily lives with a minimum amount of bullshit.
Obviously, there’s a lot of overlap, but critically, if you are non-disabled and working in accessibility, you can only support the disability community; you cannot claim it for yourself. I’ve found myself toeing that line in basically every other underinvested community I worked with in product equity: to be for (i.e., supportive of) but not in (i.e., having a voice in) communities I’m not a part of. In this case, though, I am both a practitioner and a stakeholder. I have the lived experience of disability (though clearly not all of them, which is another important point). And that makes me see this particular side of the discussion differently than if I hadn’t—or if I had a kid or a sibling or someone else close to me who was disabled.
I think that describes the difference I see in accessibility PR. You have one group of people who understand it’s important, some of whom (one hopes) have their own lived experiences to draw on. But when it gets fed into the PR machine, all the complicated stuff comes out in the wash, and in the end, it’s all about how the company helped this group or made that feature. That’s what accessibility-community PR feels like to me. It’s flat and lifeless, because it’s telling the company’s story over anyone else’s.
That’s what I love about disabled-led stories. They’re joyful and messy and pissed off, usually all at once. Their truths often make people uncomfortable: a no-no in PR. The act of simply being—not being superior or unique, just different and still okay—isn’t celebrated enough. I’ve learned a lot about myself just by making peace with my disability instead of fighting and medicating and masking it all the time. I don’t want more earned-media interventions, and I don’t want to be shown what my superpower is. If there’s one thing I want brands to show me, it’s that your accessibility community loves the shit out of disabled people the way they are, and the way they want to be.
It's either “look at us,” or “look at you.”
Those are the two voices you have to choose from between now and the next PR event in July.
Clock’s ticking.
Office hours
I make time on Thursdays to talk with people about their careers and what they’re going through. I have limited availability, but it’s free. You can book a 30-minute slot today. If it’s empty, there will be more next Monday.
Next Monday is Memorial Day in the US, so I’ll be taking a week off from writing. If you find yourself aching for something to read, I recommend To hell with the business case.
Have a great week!