Recently there has been a bit of controversy within the world of disability storytelling—some concerns have been raised about the kind of stories that are told on The Mighty, especially those stories by parents of children with special needs. These stories have been criticized for being insensitive to the children’s privacy, or, at times, humorous at the expense of those children. It has also been suggested that they are functioning as “inspiration porn” (using people with disabilities as objects within stories that become, essentially, about inspiring others).
As my readers know number of my stories have been picked up by The Mighty. I am, admittedly, a fan in many ways. At the same time, I don’t think that these criticisms are entirely without merit—they should be discussed in a thoughtful way as the community discusses what editorial guidelines are appropriate to best serve the community.
The Mighty has taken a firm stance of allowing its writers to explore disability on their own terms…whatever that may mean. But they have taken a great deal of care in the way that they go about doing this—in fact, not long ago, I raised concern about the use of the R-Word in an article. The word was used in a way that I felt allowed a man to define his disability in a way that put down those who have intellectual disabilities. When I spoke up about my concern? I was met with a good discussion, the ability to write a response article with another mother about the R-word, and a change of policy by The Mighty for how to handle the use of the R-word
Personally? I feel it is a good thing that The Mighty presses against some of these boundaries. Because, it is a sign that they are blazing some new ground here.
And when you blaze new ground, things get a bit rough—it can be hard always know which direction to head in.
The Mighty is filling a need for more representation of people with disabilities—meaning both individuals who are able to write for and about themselves and their experiences, as well as those who have loved ones who write for and about them. And, as someone who has been writing for a time about a life touched by disability, I can say, without a doubt, that there are not many venues that are particularly interested in publishing these stories—at least not frequently. Editors elsewhere have often told me—oh we just had a story about a child with a disability; get back to me in a few weeks (or months). Because there is a quota for how much they feel their audience is interested in this topic.
The Mighty, on the other hand, has always been open to the content I produce about life with my daughter. They haven’t published every story, every time, but I know that there is room at The Mighty for my voice—the voice of a person whose life has been irreparably changed by disability—not my own disability, it’s true, but a disability that I spend every waking moment (and many sleeping moments) thinking about.
While trying to give people who are touched by disability a venue for self-expression, The Mighty is also working to educate a broader public who may not have much experience with disability, about what it means to live with or love someone with a disability.
They are telling a bigger story, one that says that the experience of disability is not singular.
They are showing the world that people with disabilities, like all other people, have a variety of experiences, wishes, needs, hopes. Likewise, the people who love and care for those with disabilities—whether or not those individuals can speak for themselves—have a variety of experiences.
Many of those of us who are parents of children with disabilities and have written for The Mighty are responding to the concerns about the value and role of the voice of parents in disability by explaining why we write. And I feel like this is a really important way to answer the questions raised around what The Mighty does.
I can only speak for myself and—in some limited way—for my daughter. So in my case, I write because I want the world to better understand my daughter. I want people to look at her and think about how very lucky I am to have her—not how sorry they are that I have her. The best way I see to get there is to tell as many people as possible about how amazing my daughter is. Not just because she is tough and determined and a survivor—that too, of course—but also because of how if you look at her you see that she is just a kid, like any other kid…but, you know, also different.
Sometimes I write because I want to try to say what she would want me to say for her, until/unless she can say things for herself–which is always, always my deepest hope.
Sometimes I write because I have so much pain that I don’t know where else to put it—and it is a kind of confusing pain that I am still unraveling, the kind that at once sees my child as a perfect creature that I would never, ever, ever change…and yet, and yet…and yet, the source of such fear and anguish that I still struggle to know how to articulate and claim it.
Sometimes I write to the old me—the one who worried she wouldn’t be enough for the vulnerable child I found myself holding—the one who wasn’t sure she’d make it through—the one who worried so much about loosing her child that she lost herself a little along the way.
I write because my daughter’s story is, in so many ways, my story too.
I write because I do not claim to know all about disability—but I do know about what disability has meant to my life.
Sometimes I write because I want to understand.
Sometimes I write because I want to explain.
I write because it is all I have to offer.
I write because it has saved me.
I write because I cannot stop.
I write because Esmé.