Disabled people want to and should be at the center of our own stories.
How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
Maybe this sounds familiar: A video of a woman standing up from her wheelchair to reach a high shelf, with a snarky caption about how she’s clearly faking it and is just “lazy.”
Or maybe a photograph that came across your Facebook feed, featuring the “promposal” someone did for their autistic classmate, with headlines about how heartwarming it is that an autistic teen gets to go to prom “just like anybody else.”
Videos and photos like these, featuring disabled people, are becoming more and more common. Sometimes they’re meant to stir up positive emotions — sometimes outrage and pity.
Typically, these videos and photos are of a disabled person doing something that able-bodied people do all the time — like walking across the street, working out heat the gym, or being asked to a dance.
And more often than not? Those intimate moments are captured without that person’s permission.
This trend of recording videos and taking pictures of disabled people without their consent is something we need to stop doing
Disabled people — especially when our disabilities are known or visible in some way — often have to deal with these kinds of public violations of our privacy.
I’ve always been wary of the ways that my story might be spun by people who don’t know me, wondering if someone might take a video of me walking with my fiancé, holding her hand while using my cane.
Would they celebrate her for being in a relationship with a ‘disabled person,’ or me for just living my life the way I typically do?
Often the pictures and videos are shared on social media after they’re taken, and sometimes they go viral.
Most of the videos and photos come from either a place of pity (“Look at what this person can’t do! I can’t imagine being in this situation”) or inspiration (“Look at what this person can do in spite of their disability! What excuse do you have?”).
But anything that treats a disabled person with pity and shame dehumanizes us. It reduces us to a narrow set of assumptions instead of fully-fledged people.
Many of these media posts qualify as inspiration porn, as it was coined by Stella Young in 2017 — which objectifies disabled people and turns us into a story designed to make nondisabled people feel good.
You can often tell a story is inspiration porn because it wouldn’t be newsworthy if someone without a disability were swapped in.
Stories about someone with Down syndrome or a wheelchair user being asked to prom, as examples, are inspiration porn because no one’s writing about nondisabled teens getting asked to prom (unless the ask is particularly creative).
Disabled people don’t exist to “inspire” you, particularly when we’re just going about our daily lives. And as someone who’s disabled myself, it’s painful to see people in my community exploited this way.
Whether it’s rooted in pity or inspiration, sharing videos and photos of disabled person without permission denies us the right to tell our own stories
When you record something that’s happening and share it without context, you’re taking away from a person’s ability to name their own experiences, even if you think you’re helping.
It also reinforces a dynamic in which nondisabled people become the “voice” for disabled people, which is disempowering, to say the least. Disabled people want to and should be at the center of our own stories.
I’ve written about my experiences with disability both on a personal level and from a broader perspective about disability rights, pride, and community. I would be devastated if someone took that opportunity away from me because they wanted to tell my story without even getting my permission, and I’m not the only one who feels this way.
Even in cases where someone might be recording because they see an injustice — a wheelchair user being carried up the stairs because there are stairs, or a blind person being refused rideshare service — it’s still vital to ask that person if they want this shared publicly.
If they do, getting their perspective and telling it the way they want it told is an important part of honoring their experience and being an ally, rather than perpetuating their pain.
The simple solution is this: Don’t take photos and videos of anyone and share them without their permission
Talk to them first. Ask them if this is okay.
Find out more about their story, because there’s probably a lot of context you’re missing (yes, even if you’re a professional journalist or social media manager).
No one wants to check social media to find out they’ve gone viral without even intending to (or knowing they were recorded).
We all deserve to tell our own stories in our own words, rather than being reduced to memes or clickable content for someone else’s brand.
Disabled people aren’t objects — we’re people with hearts, full lives, and have so much to share with the world.
Alaina Leary is an editor, social media manager, and writer from Boston, Massachusetts. She’s currently the assistant editor of Equally Wed Magazine and a social media editor for the nonprofit We Need Diverse Books.