If you're a somewhat active Facebook user, I'd venture a guess that you've seen at least one article from a website called The Mighty in your newsfeed. With frequent click-bait headlines (recent example: "When Gym-Goers Said Inviting a Dwarf to a Party Would Be 'Hilarious'") and a steady stream of posts intended to play to emotional sides, The Mighty has become one of the most popular websites focused solely on disability and disease to make an impression on mainstream social media users. Unfortunately, there's controversy flaring up around The Mighty right now that I just can't ignore.
The Controversy
You can read about what sparked the firestorm in more detail if you'd like, but here's the crux of the issue: The perspectives of contributors to the site are often at odds, largely due to an "us vs. them" mentality held by non-disabled parents of disabled children and the disability community. Many non-disabled parents use the Internet as a public forum to express their thoughts on disabilities and their experiences in relation to raising their children. Many disabled people (myself included) would like non-disabled parents to use more discretion regarding what they share. We would like the voices and viewpoints of non-disabled parents to not overshadow those of people who live every day in a disabled body. This is not applicable to all parent writers, as many truly take the time to listen to what the disability community has to say, actively connecting with and being part of the community. Other parents, however, feel that disabled activists are really just trying to censor or silence them.
Really, this is a tired tale that debate over The Mighty happens to have revived. Take, as just one example, what I wrote last year for the Huffington Post about the parents who didn't see anything problematic with publicizing a photo of their 16-year-old disabled son wearing nothing but a diaper in a story for NPR. These parents wanted to share their stories as caregivers, and they were well-meaning, but there were so many other ways they could have addressed how they care for their son. They still could have provided an honest look at their lives while also respecting their son's dignity.
This type of oversharing never sits well with me, but it doesn't mean I believe parents don't have a right to share their experiences. And if The Mighty wants to provide a platform for that, great. The problem, though, is that The Mighty constantly tries to be all things to all people, and it's difficult to find a middle ground between the debaters. The Mighty has the potential to be a vehicle to increase understanding between parent and disabled communities and among society at large, but this can't happen effectively when there's a constant tug-of-war between people trying to do the educating.
One article paints disabled people as inspiring for simply living their lives (known as "inspiration porn" and here's a TED talk by Stella Young about it that you should save to watch later); the next focuses on promoting genuine insight and acceptance. Another article shares the perspective of a non-disabled parent of a disabled child; the next is a piece written by someone who actually has a disability. Is it even possible to foster a peaceful coexistence between non-disabled parents of disabled children and disabled activists, all on one platform?
The Real Question
I've stayed quiet about this until now. (Full disclosure: I was invited via email to speak with the editors, as were many disabled writers, when the controversy first came to a head. I took a bit to answer, but they didn't respond to my reply to set up a call.) I think The Mighty has its merits, and there are certainly gems within the content. In 2014, I had a couple posts republished on there, excited to contribute content to a growing site with a disability focus. (I've since asked to have them pulled. They responded to this request right away. Go figure.) On the flip side, I find some of what they post to be harmful, and they seem to be spiraling down a black hole of not handling the current controversy well, thereby alienating a number of their contributors. But to make The Mighty the focal point detracts from a larger conversation at hand. It just happens to be the current online space to raise the question: who should speak for the disability community?
I tackled this question about two years ago, in a post for Think Inclusive. I'm firmly committed to what I wrote.
"It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it's more important to know when to step down."
We Should Be a Team. A Real One.
My parents instilled in me the value of speaking up for myself, but they've also been there every step of the way, handling things at various times through my life when I could not do so. They were my voice when I needed them, but they never claimed to be the experts on my experiences. They're the experts on my experiencing my life along with me. Semantics, you might say, but there's a huge difference. Even so, I do find myself conflicted at times, because in many situations, I believe my parents - especially my mom - would have benefitted from stronger sources of community and camaraderie than what they had as I grew up.
Every time I recovered from surgery, every time I went to my parents with tears in my eyes because I'd been excluded from something because of my disability, every time I struggled to do something independently and got frustrated - my parents felt the pain, too. And of course, every time I've accomplished a goal or done something I didn't believe to be possible - my parents felt the pride, too. My life deeply affects and intertwines with my parents at every turn. The role they played, and continue to play, in my life is something I value above all else. We always have been, and always will be, the Three Musketeers.
Like any child, though, as I got older, the situations I found myself in were often ones I wanted to keep to myself. Even when my parents needed an outlet, this is something they understood and respected. It's also something that should be common sense. No child, disabled or not, deserves to have details of their lives plastered on the Internet by their caregivers. I believe it comes down to this: parents have a right to share, and children have a right to privacy. Can't we meet in the middle?!
I don't think it's productive or necessary to ask parents to back down completely and stop sharing their experiences. I don't want to alienate the parent community, just as I don't want to feel alienated as someone who is disabled. But I can't defend or support oversharing, overbearing parents. This doesn't mean I'm asking anyone to censor the realities of disability, or that I'm denying the validity and importance of the caregiving experience. I'm asking for everyone to hear what disabled people are saying. Hear us if we ask you to consider how the ways you convey stories about disability may be hurtful or harmful. Hear us when we say that we want you to speak with us, not for us. Voicing your experiences cannot, and should not ever, be at the expense of the perspectives of the disability community, or the dignity of your child. We should all be in this together.
