NOTE: If you're new here, welcome! When I write about accessibility, you will find that I use the terms "people with disabilities", "PWD", "the disability community", and "disabled people" interchangeably. This is something I deliberately do to challenge our institutional insistence on "person-first language."
I was so confused as to why, after so many posts, conversations, and shared links, that people close to me still didn't get it. Didn't think critically about this story and whether they should share it before hitting "share post." Didn't think about the lived experience of PWD before deciding that the person featured existed to teach the world about gratitude. I wondered what I was even doing here. I wrote a FB post about it, then deleted it almost immediately, thinking about the fights I didn't want to have.
I slept on it and decided to write this post instead.
This, of course, is not just about that one post. I've also seen posts across groups and Twitter threads where library staff share their sweet stories to keep us all going-- and some of these happen to specifically mention the fact that the person they were helping was disabled, or "looked" disabled. Occasionally these posts are called out in the comments, to be defended as "I just wanted to share a story." Members in groups tag mods who assert that it's the job of disabled members to educate other members, that everyone is "still learning." (if you're serious about learning, there is a Facebook group-- here-- that exists for PWD to volunteer their time to answer questions). As if Google doesn't exist. As if we're not all information professionals.
So I decided to make checklist about whether or not to share stories about disability you find "inspiring", particularly if you are an abled person.
1. Are you a disabled person and want to share a post about someone doing something badass? I'm addressing this first because it is brought up nearly every time I talk about this, and it is always brought up by an abled person. So, here: It's not my place, nor anyone else's, to publicly monitor or correct a disabled person's feelings about themselves and their disability, even if they are experiencing internalized ableism and manifesting it through sharing content. Abled people, trust that this work is being done in-group and not where abled people can see. One group I'm in has discussions about whether something is "inspiration porn" at least once a day. Focus on yourselves and other abled people you know. If you only identify as disabled when you're called out to avoid critique, please examine that.
1a. "What if I'm just happy for this person? Geez." Okay, THIS is probably the first thing that is brought up, so here it goes: listen, you can be happy for whoever you want. I just want you to think about why it is always the person with Down's being asked to prom, or the time when you showed a PWD the most basic human compassion and helped them at your work, where it's your job, or the one time the prime minister of a nation who ABSOLUTELY has the power to change the laws and demand accessibility but is totally cool with just a photo op where he's carrying people up stairs, that makes you feel those warm fuzzies. I request you ask yourself this because: Disabled people as a community continue to come to terms with our historical trauma, which involves institutionalization, sterilization, and euthanasia; on the other side of that is the mixed but overall negative history of side shows and an existence as medical curiosities. The framing of disabled people in the stories I'm describing here play right into and are shaped by this history.
2. Do you personally know the disabled person? If you personally know them and were encouraged to share it, share away! Just make sure what you post follows the other guidelines here to avoid being exploitative. Remember that children cannot consent to you sharing their image.
3. Would the story be newsworthy or heartwarming if the person wasn't disabled? One recent video I saw was of a young girl taking her first steps with a walker. Any child taking their first steps is a milestone, but why is this one in particular going viral? There are plenty of disabled kids doing super extraordinary stuff yet never walk. In this case, I posit that this video went viral because the child was performing in a way that makes her more similar/desirable to nondisabled people; and in the abled narrative an ultimate goal is for every disabled person to become abled (by their own bootstraps, and if they don't it's their fault, of course) so that society doesn't have to change to accommodate us.
4. Do you know and share the person's name? Say you do know someone personally, or see a post by a friend of a friend that you would like to reshare. Be sure to include the disabled person's name. If you don't, you may be contributing to the abled narrative's assertion that it doesn't matter what a person's name is, because that individual person doesn't count. It's how abled people feel about the story that does.
5. Does the story center the disabled person? Does the story brag about how nice an abled person was to a disabled person? Do the good feelings come from an abled person helping a disabled person? This is only news because the abled narrative tells us that the default is to not help or accommodate disabled people because we are burdens. If the story only talks about and quotes the abled person, or only names the abled person by name, it is not a good story to share.
After a few years of viewing these stories through a disability justice lens, the appropriate response to many of these stories imho is action. Why were William Reed's accessibility needs so overlooked and/or expensive that he went 66 years unaccommodated (why is the technology not there? Why is disability such a low research priority?)? Why were Tim Cook's accessibility needs not anticipated to the point that a 15-year-old girl was called upon to help him on a plane (What would have happened to him if she hadn't been there?)? Why is a nail salon that openly discriminates against disabled people allowed to be open?
Disabled people are not inherently inspiring, and we don't exist as a function of abled people or tools by which you can cultivate gratitude for being superior to us. Until you can examine this in yourself and in society, however, you can continue to excuse the barriers to access that exist for disabled people as "just how it is."
When: what if it's not? What if it's not "just how it is?"
The above is not an exhaustive list. Fellow PWD, please add other considerations in the comments!
I've decided that at the end of my posts about disability, I'll be donating to and featuring a fundraiser or wishlist to benefit individual disabled people. If you're reading this and have a campaign to feature, please email me at brycekozla at gmail dot com!
If you liked this post, please consider contributing to the GoFundMe to help artist team Mandem. They've reached their original goal but can definitely use more. As they said in a recent update: "This covers our past-due rent as well as paying the upcoming month, which is such an incredible load off of our minds. Now that we're out of the danger zone of immediately losing our studio, we are going to 'stretch goal' the campaign to cover more of our upcoming studio rent." They say of their art, "Our work explores the visceral and disabled body, art history, religious iconography, and issues of gender and desire." Follow them on Facebook here.
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