I joined Twitter relatively recently, and over the last couple weeks, have unintentionally been doing an experiment.
I tweeted a positive comment about disability and how it has makes me a better and stronger person. #DisabilityPride. It got 2,261 views, 73 likes, 12 retweets, and earned me a handful of new followers. Before that, I’d posted about how “pride” means going out in the world, unashamed of mobility devices, not staying locked up in your house, grumbling about how you’re “too proud” for wheelchairs or walkers. That tweet got 3,540 views, 96 likes, and 14 retweets.
I also tweeted a less sunshiney message, about CBS Sunday erasing the disability perspective (ie, my brother’s interview) from their coverage of the straw ban story. I tagged this major tv network and the city of Seattle in the post. I explained how their erasure changed a story of “oppression of a marginalized population” into an “amusing, quirky, feel-good story.” It’s a big story and a trend that’s sweeping the country, having real effects on real lives, and they didn’t just trivialize the issue; they erased it. That tweet got a mere 207 views, 2 likes, and no response from CBS.
Then I tweeted about @MassageEnvy turning me away, cancelling my appointment, refusing to serve me because of my wheelchair. Despite a couple fantastic and outraged friends retweeting and even tagging local news stations, the post received 1,068 views, and only 2 likes. Nobody has reached out to me in response.
These four tweets certainly don’t meet the parameters of a “simple, random sample” for statistically significant evidence of anything. But I feel like they fit a larger pattern that I’m seeing around me… People are only interested in the feel-good version of disability stories.
Everybody says that “the media only focuses on the negative; they don’t report the positive stories.” There might be truth to that, but not when we’re talking about disability. Disability stories are supposed to be warm-and-fuzzy. They’re supposed to make you feel good and regain your faith in humanity. If the disabled can’t do their job and inspire you, then they should stay out of sight.
Disability stories get passed around the internet all the time. They’re easy enough to produce. Just put some sappy music behind coverage of a girl with Cerebral Palsy getting asked to prom. Or a guy with Down’s Syndrome working at a coffee shop. Profile a disabled athlete and be sure to include the phrase “doesn’t let their disability stop them.” Bonus points if you describe their disability as something they just “happen to” have.
A lot of those viral stories completely miss their own point. Videos of strangers carrying someone’s wheelchair up the stairs so that the disabled person can attend their best friend’s wedding reception, applaud the kind-hearted strangers. But they ignore the key questions—why doesn’t the venue have an accessible entrance? What are they doing to fix it? What kind of friend chooses an inaccessible location for their wedding? This is a story that should invoke outrage every time it’s told, not warm-and-fuzzy love for human kindness.
Or how about the stories of families that start their own “inclusive prom” in response to their high school’s prom being inaccessible? That’s a story of discrimination. It’s not a feel-good story. Yet people get all gooey-eyed over it. (I’m all for affinity events where the disabled community can get together and socialize with each other. But those should be in addition to public events that are available to everyone, not the only alternative.)
Oh, or here’s a story I always find horrifying—the college graduation stories, where the parent is awarded an honorary degree for following their disabled (adult) child to every class and attending to their every need throughout their education. Those stories leave me with so many questions, but mostly: why?? Why didn’t the university and/or state provide the assistance the student needed? Did the family pursue services? Did they know about available services? Were they denied services? Would we applaud an able-bodied college student for having their parent shadow them everywhere they went? Is this student ready to be an independent adult in the real world? So many questions! But the stories don’t report on any of that. They just play sappy music and try to get you to cry over the parent’s selfless sacrifice for their burdensome child. How inspiring.
Meanwhile, the disability stories that need telling, don’t get told.
Why don’t we see stories about the couples that can’t get married, because the disabled partner will lose essential, life-sustaining services if they do? How many people reading this even knew that the government punishes the disabled for getting married?
Why don’t we see stories about the unemployment rate in the disability community? Why don’t we hear about the barriers to employment—discrimination, workplace policies, and most of all, the state again taking away essential, life-sustaining services if we have an income? Within the disabled community, there are endless discussions about how to navigate the bureaucratic mess and access services while employed, but there aren’t words to express how complicated it is. Did you even know this was “a thing?”
Why don’t we see stories about all the college graduates with disabilities who, unable to find employment, do all kinds of volunteer work instead? We always hear about the kindness of others helping us out. But the disabled population is full of good hearts giving back to the community. Why don’t we highlight their work, while asking critical questions about why the only labor we want from our disabled population is free labor?
Why don’t we see stories about how the Americans with Disabilities Act—originally signed into law by a Republican president—has been shot full of loopholes ever since, with its all-time greatest threats coming from the proposals of our current Republican Congress? Why don’t we hear shaming of businesses that still fail to comply with the ADA, almost 30 years later?
Why don’t we see stories about the widespread poverty of the disabled community, and question why that is, instead of accepting it as the natural order of things?
Why don’t we see stories about the utter failure to regulate air travel the way we have land transportation? Why don’t we hear about the trauma-inducing service that’s considered standard for disabled airplane passengers? I know the stories don’t get shared, because everybody is shocked when they hear my stories. Their false perceptions of what they think flying with a wheelchair is like would make me laugh, if it weren’t for, you know, the trauma.
I could keep going.
And what about the way we teach history? When we’re teaching about how different groups have fought for equal rights in the US, do we ever include disability in the history? When we’re teaching about school segregation, do we mention that schools weren’t required to accept disabled students until 1975? And that there still wasn’t a law to address their segregation until 1990? Do we teach about the disabled activists that fought, and continue to fight, for our rights? Without googling, can you name a disability activism group? I don’t mean a charity that’s trying to cure a disability; I mean activists with disabilities fighting for our community’s rights.
We don’t even like looking at the disabled as a group with rights. The disabled get kindness and charity from us, so we can feel warm and fuzzy when we give it to them, and don’t have to feel bad when we don’t. But they need to stay in their place and not starting acting ungrateful or entitled. We don’t want to hear their complaints. They already get the best parking spots; what more could they possibly want?
I’m so tired of the smoke and mirrors required to make my life as a disabled woman look independent, free, and effortless. I’m tired of my community being so badly misrepresented by the media. We really aren’t the sweet, innocent, sunshiney cherubs that exist to inspire and warm your able-bodied hearts. We’re much more interesting than that. Our real stories deserve to be told. Real problems will never be solved, if they aren’t even widely recognized as existing.
Our stories won’t always make you feel good. They’ll make you angry, make you sad, make you confused, and make you uncomfortable. But it’s time to be ok with that.