Imagine a new friend invites you to a party at their house. When you arrive, you knock on the door, but nobody answers. You try the door but it won’t open. You step over to the sidewalk to check that you have the address correct. From the sidewalk, you notice other people arriving and having no trouble getting in, but when you return to the door, it won’t budge for you. You text your friend, but they are probably busy greeting guests and don’t respond to your message. Finally, you decide to ask the next person arriving to hold the door open for you but when you do, they say, “Well aren’t you high maintenance?” They were probably joking, you tell yourself, but before you can respond, the door has swung shut again. By this time, you feel very dejected, not to mention worn out from pulling and pushing on the door. You are now in no mood to socialize. You go home, wondering what just happened.
The next day your friend texts you, apologizing for not seeing your message the night before. You are still too confused and exhausted from the experience to have a conversation about it, but the next time you see your friend, you explain that you tried to get in but couldn’t open the door. They look at you with confusion. “Nobody else had any trouble,” they say. “Why didn’t you ask for help?” You want to explain that you did, but you’re already feeling a bit foolish, so you just let it go.
You might laugh off this odd occurrence if it happened only once. Now imagine that this happens every day, everywhere you go: at work, at the grocery store, at restaurants, at school, at church, at the homes of every friend and family member. Nobody else seems to have trouble getting in. It’s just you.
This is what it’s like for a disabled person trying to access spaces that are designed with only non-disabled people in mind. You can take this basic metaphor and extend it in different ways to understand the experience of a disabled person. For example, as a vision-impaired person, I can usually get into a space but then I often can’t access what’s happening in the space because the signs, slides, handouts, etc. aren’t visible to me. A neurodivergent person may, like me, be able to physically enter the space, but then may find the social cues others notice to be invisible to them.
It’s frustrating and confusing. When I first can’t see what others see, I often don’t even know they see something I don’t. I sometimes wonder how everyone else knows where to go for a meeting—it often turns out there are signs that I don’t see. Asking for help is often unproductive because I don’t know what I’m missing so I don’t know what to ask for. Or, like the person who asks for help getting into the party and is met with a sarcastic response, my requests for help are greeted with snide comments because my disability isn’t apparent. (I am so tired of people pointing at signs I can’t read when I ask for help!)
As my hypothetical scenario shows, there’s no malice on the part of the friend who throws the party or even the people who don’t help. They are just oblivious to the plight of the person who can’t get in. But the lack of malice doesn’t make the situation easier for the person who can’t get in.
Last week I spent a few days in Washington, DC, doing research related to disability at several national sites. I saw lots of gestures toward accessibility that I appreciated—and yet, the doors still don’t open easily for everyone.
The National Mall: I was surprised to learn that the FDR memorial is the only one of the 100+ memorials and monuments on the National Mall to include Braille on some of its exhibits. All of the memorials and monuments have brochures in Braille available and are wheelchair accessible. A park ranger explained that the FDR memorial includes Braille as a nod to FDR being disabled himself. (I was surprised at how powerful it was to see the statues depicting FDR using his wheelchair—I’ve seen wheelchairs in photos, but I don’t think I’ve ever seen one in a statue.)
As much as I appreciated the availability of Braille brochures at the sites, every time a disabled person has to ask for accommodations, they are the person trying to get into the party at the house where the door seems to open for everyone but them. That feeling of not being able to get into the house where the party is compounds over time. Asking for a brochure isn’t a big deal. Having to ask for a brochure constantly, day after day, wears a person out. Annika Konrad calls this being worn out feeling access fatigue.
Gallaudet University: Another day I went to Gallaudet University’s National Deaf Life Museum. The museum itself was very thought-provoking, especially the exhibit on HIV/AIDS and the Deaf community. The title of the exhibit was “Left Behind” and it focused on how Deaf people didn’t have access to information about HIV/AIDS during the epidemic.
The museum is in a beautiful campus building that exhibits the traditional academic architecture Jay Dolmage talks about in Academic Ableism. From the front, it appears the only way in is up a foreboding set of stone steps. I walked around the building looking for a wheelchair accessible entrance out of curiosity and did find one, but there was no indication at the front of the building where to find the accessible entrance. A person using a wheelchair would likely need to ask a random passerby for help finding it.
I want a world in which the doors open for everyone, but I wonder if it’s even possible. Surely it would be possible to put an attractive and high contrast sign in front of a building indicating where the accessible entrance is—or better yet, make the main entrance accessible. Design Braille into the next monument. Find ways to prop the doors open.