The Mighty Question: Who Should Speak for the Disability Community?

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 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.

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Comments

  1. The concept of The Mighty is even harder: disabled people are all different, not just from able people (who are all different), but from all other people, even those with the SAME disability.

    And when no one is looking to balance that imbalance, readers (and selective publications) can find something that supports their point of view – and miss out the other important factors.

    And if you have more than one disability, as I have, be prepared for disaster.

    Every article should start with, “In my opinion” and state what that opinion is representative of, and where the data comes from (including personal anecdotes), and it should certainly respect the privacy of disabled folk AND parents (disabled themselves or not) AND caregivers AND…

    You’re right – but I don’t see easy solutions.

    1. Alicia, this is a really important assessment, as people do tend to forget (myself included, at times!) that so much related to disability comes down to feelings and opinions.

      1. And feelings and opinions are related to temperament! As a choleric-sanguine, I tend to be very passionate and intense whereas a phlegmatic-sanguine would be more laid-back.

  2. I believe that people who are disabled need to speak for themselves since it is their life experience they are sharing and no one who is not them can even begin understand who they are. I also believe there needs to be forums for those who love someone who is disabled where they can speak about their own life experiences of loving someone who is disabled. Each should speak to their own issues and never assume they can understand what the other feels.

    1. I think you’re spot on, Susan, in that it’s best to speak to our own issues. And when they intertwine with another person, we can do our best to discuss in thoughtful, respectful ways.

  3. In my opinion, as a Mom of a daughter who had a list of disabling conditions AND having my own disability labels, I found this post perfect. It was clear and comfortable. But, I’ve always been teachable. (Hoho inside joke)
    I’ve had mentors who thought I could benefit from understanding disability culture. They were right. It’s a bridge we all have to cross one by one going from “them” to US.

    1. Understanding disability culture is something that I think would be beneficial to everyone, and I’m so glad you found your way on the bridge to “us,” instead of “us” vs. “them.” Thank you for your kind words about the post.

  4. As an autistic choleric-sanguine, I have a lot to say about disability and temperament theory in all its forms. Most disability advocacy issues are first and foremost temperamental issues.

  5. Hi Emily
    I also recently wrote a blog about parents who allowed their little girl to be filmed in physical therapy wearing only a pair of underpants that were falling off. The mother responded to me highly offended and said that her daughter should only care that she was being taught how to walk. My point was that when she is older she will see the video and be embarrassed. Mom said that was unimportant and clothes got in the way anyway

    1. Hi Linda,
      I’m sad to hear about that, as I got a similarly offended response from the parents of the young man from the NPR story. I’m glad you wrote about it though.

  6. Once again Emily you are right on. I am so happy that you are there to oversee all the goings on in Social Media and taking a quick aggressive opinion to stop some of the wrongdoings.

    I am so happy that you are the voice of reason. A person’s dignity is their own, and should be consulted before going mainstream with photos. Mom and Dad should listen hard to the wishes of their children before posting anything, no matter how innocent they believe the photos or stories are.

    Think before you post….
    Keep up the great work Emily

  7. Hi Emily,
    Thank you for this post, as it sums up what I have been thinking for some time. Able-bodied people do not know more about life than I do simply because they are able-bodied. I don’t need to ask a professional for suggestions if I know that this professional will not be helpful; Usually what happens is a professional will tell me to talk to ________________. My voice matters and is powerful. My experience is valid, even if my experience does not match anyone else’s in the universe.

  8. I do agree with you, that the experts on the disability experience are people who themselves have a disability.

    I haven’t given up on The Mighty, and will still post the occasional story – perhaps a few times per year. I have recently began posting to the Disability Stories publication on Medium. I like that platform, because it gives me complete freedom over what I write. I can write the deeply personal stories that would never have made the cut at The Mighty.

    I want to read articles where people speak from the heart, not articles that are focused primarily on attracting clicks.

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