By now, many of you have probably heard about the controversy surrounding the disability media site, The Mighty. The Mighty is a website that gathers real life stories related to disability to be shared in a manner similar to that of Buzzfeed. When The Mighty was started, it had potential to be a positive, cross-disability space. I have read some excellent posts through The Mighty and have even shared some of my pieces there. But lately, The Mighty has taken a turn for the worse, enabling the spread of stories that promote "inspiration porn" or sacrifice the dignity and privacy of their subjects for clicks. Recent editorial decisions, such as the publishing of articles that reveal intimate details about a young disabled man’s bowel problems, drew calls from many disabled people and allies for stricter guidelines and a serious conversation about media etiquette.
Unfortunately, many contributors who lent their insights for positive change were either ignored or met with extreme hostility by other readers. The editorial staff expressed some interest in hearing our concerns, but continued to allow for the submission of stories that perpetuate the attitudes with which many of us were concerned. Some of my friends and fellow bloggers were even kicked out of a Facebook group for contributors after posting proposed guidelines for future submissions. The silencing of our legitimate concerns shows great disrespect for a community The Mighty claims to serve.
Some readers have tried to portray the controversy as a “war between disabled adults and the parents of disabled children.” Some have accused us of an unwillingness to honor the parents’ perspective. Some have said we have “no right to comment on what they share about their children.” First of all, adults with disabilities are not out to get parents. We are not saying they cannot share their experiences or that those experiences do not matter. I know that my disability affects not just me, but everyone around me. I know that so often, the lives of disabled people and their loved ones or caregivers overlap. But that does not mean they can share the most intimate details of our lives unchecked. That does not mean they can write about a child’s toilet training struggles and reveal humiliating incidents about bowel accidents to the whole Internet. The desire to write a story that will get lots of “likes” does not trump the rights of people with disabilities to be treated with dignity. It is blasphemous to suggest that we have no right to comment on what is shared when these insensitive writers are literally sharing us. I have been disabled my entire life and my disability causes me to need help with virtually everything from bathing to putting on socks. Trips to the bathroom and even showers, events normally reserved for solitude, happen in front of people. I can tell you for certain that I wouldn’t want the details of these private moments to be available for public consumption. My story, my body, and my life belong to me. The thought of them becoming public property is terrifying.
Other pieces have promoted rhetoric that is harmful and frankly, dangerous. A recent submission titled “The Moment You Think Your Child’s A Burden” features a mother’s admission that she has thought of her disabled daughter as “a burden she will carry for the rest of her life.” I cannot tell a parent how to feel or control the emotions he or she experiences. But I know for certain that these thoughts and feelings should be addressed offline, not on a public forum. They especially have no place on a forum designed to advocate with and uplift others. As a disabled daughter, who in an ableist world still wrestles with the fear that I might be a burden to others, the mother’s words stung me in a deeply personal way. It was that article that cemented my decision to remove my writing from The Mighty, as it no longer represents a community I can be part of as an activist or a human being. I always tell writers, especially parents who write about their disabled children, to write about a person as though he or she will read the piece.
What will the people you wrote about feel when they read the story?
Would you want the same information published about you?
You love your child… but when he reads the article, will he know it?
I believe that most parents and caregivers have valuable perspectives, but those perspectives cannot be used to overpower or invalidate the experiences of disabled people themselves. Some parent bloggers will argue that their child will never be able to read or understand the article anyway. Even in a case where that is true, all people with disabilities including children deserve to have their humanity honored. Your child may never read the article in which you call him a burden or reveal your “secret” (a secret no longer) that you wish he were “normal.” But millions of other people will.
One of them may be a fragile seventh grade girl in a wheelchair who reads those words and worries that her parents wish she were “normal.”
One of them may be a newly disabled man asking if his life still has value, who needs more than anything for someone to tell him “yes.”
One may be the sibling of a disabled child who wonders if you really meant it when you said that people like her brother were a burden.
Think about those readers. What would you tell them?
Words are important. Words can connect and heal and empower. Words can unite and protect and nurture. But words, used carelessly, can forever damage those they describe. When you talk about disability, you talk about me. You talk about my friends. My past. My present. My future. You talk about people who are real. You tell the world if society should value disabled lives or not. You help that fragile seventh grader grow to be proud or you fuel her feelings of shame and doubt. When you talk about disability, you talk about us. Don't be surprised if we talk back.