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.

My Wheelchair is Not My Halloween Costume

A note: This piece is written from the perspective of 12-year-old Emily, who was still quite conscious that a wheelchair itself is not a costume, and it’s not something to be questioned or mistrusted. My disability is simply another part of me – a real part of me. My goal with this is to point out unnecessary ableism in a way that hopefully brings some levity and humor to the situations I experienced. Happy Halloween, everyone!

The year my dad hit the curb with my wheelchair and I landed in a heap of crushed fairy wings should have been my first clue that Halloween was not my holiday. But when you’re eleven years old, no candy gets left behind. You just have to pull yourself up by the fairy wing straps and persevere.

I assumed the next year would be business as usual and when October came, I waited by the phone for my friends to invite me out to the trick-or-treating big leagues in the wealthy neighborhood on the other side of town. I could practically taste the full size candy bars I’d be getting in my plastic pumpkin basket…but the taste went from Hershey’s sweet to Warheads sour when I got out there and saw myself surrounded on all sides by massive grand staircases leading up to spooky decorated mansions. No Halloween princess I knew could clap her hands and have servants carry her up the stairs.

So my friends brought the candy to me. And yeah, it was almost as good as having servants…at least until my friends were accused of trying to score extra candy by lying about their friend in the wheelchair who couldn’t climb the steps. Uh, hello?  I’m right here. Silly Halloween candy police. Are you implying that little girls who use wheelchairs can’t have friends?  Well, guess what, candy police?  I’m here to tell you that people with disabilities do more than just live inside the imaginations of candy-hoarding twelve-year-olds.

But being a real live twelve-year-old girl in a wheelchair was hard sometimes, you know?  At least that’s what I was told, since the man at the next house over felt so bad for “that poor girl in the wheelchair, so please take some extra candy for her and God be with her.” Well, that was awkward, I thought, but thanks for the candy, I guess. I mean, if people are so convinced that my life is so hard, I must have deserved an extra Snickers, right? So I should just stay quiet and take the supposed perks of disability wherever I could find them, right? And for that matter, mister “God be with me,” shouldn’t I just be grateful that my parents let me out of the house like all the “normal” kids?

Well, I was grateful. But not because I got to taste the candy of “normal” life. I was grateful because I managed to finish enough homework for my parents to take me trick-or-treating. Pretty “normal” twelve-year-old life, don’t you think? I had earned my right to go about filling that silly plastic pumpkin basket, happy to be out like every other kid on Halloween.

And then we came to a house with no steps! Jackpot! I rolled up feeling super confident in my princess costume, crown on my head, and just as I held out my pumpkin I heard:  “Oh, I get it! You’re in a wheelchair! You’re right out of the hospital! Cool costume!”

REALLY, mister?, I thought. Did you not get that I’m a princess? I mean, I know I’m in a winter coat, but there’s a bright pink crown on my head! I can pretend to be a princess, but I sure as hell wouldn’t dress up as a girl in a wheelchair. Don’t get me wrong; it’d be nice to attach my crown to my head and my wheelchair to my butt once a year. It’d be nice to take it all off at midnight on October 31st and put it on the shelf ‘til next Halloween. But my wheelchair is not a costume. I can’t put it on and take it off like fairy wings or a princess crown. And that’s fine with me.

So accept me as I am. Accept me as a fairy or a princess. And please, don’t patronize me. Just share your candy.

The Complexities of “Curing” Disabilities

The Complexities of "Curing Disabilities" by Words I Wheel By

I can’t count how many times I’ve been asked variations of the question: “If there was a pill that could cure your disability, would you take it?” Though the short answer is a resounding “No!” I rarely get the chance to elaborate on the complex feelings and emotions that are behind my answer.

Here’s the long answer: I definitely have moments where the thought of an instant cure gives me pause. I wonder what life might be like as an able-bodied version of myself. I try to envision myself walking around the mall or running after a soccer ball. I try to picture myself climbing a tree or jumping rope. But thinking about these things is mind-bending for me because they’re not part of my life. And I’m okay with that. I don’t have a burning desire to walk or run or climb or jump like an able-bodied person, because such actions have never been part of my life to begin with. Since I was born with my disability, I don’t feel that anything was taken away from me. It’s simply not possible to miss something I never experienced.

I think “cure” is actually a rather loaded term in relation to my disability, because to cure something implies that you are returning the body to its normal state.  My disability is my normal state. To cure me in accordance with the medical definition of the word would not only give me new abilities, but also essentially transform me into a whole new person. I can’t imagine myself as an able-bodied person, because I never was an able-bodied person. I’ve embraced my disability as a huge facet of my identity, and I take pride in it.

While I don’t define myself solely by my disability, having a disability has undeniably shaped who I am. Without my lived experiences as a disabled person, I would be a completely different Emily. And as tough as certain aspects of my life have been, and though I know I will continue to face disability-related challenges throughout my life, I wouldn’t trade my life for a minute. My disability has given me a place in a community and a culture; it has been the reason why I’ve had amazing adventures and unforgettable experiences. To walk freely up and down stairs for one day would never measure up to the things I’ve done because I have a disability.

So, my answer is still no. No, I would not take a pill for a cure. That being said, it’s not my place to judge another person for answering “yes.” I understand that disability is a highly unique experience from one person to the next, and I can’t say that my opinions on “curing” disability are the only way to think about it. For instance, it is completely reasonable to search for cures for degenerative or painful diseases and disabilities. If I could take a pill to cure the pain I experience, I would do that in a heartbeat. But I don’t want to change who I am. We should be looking to cure the pain, not the person.

We should not be trying to cure disability or disease because society sees it as something to devalue. And for that matter, if the reasoning behind “curing” disability is about eradicating differences from society, then I think we should cure society’s ableism instead. We should make it a priority to eliminate access barriers and prejudiced mindsets, rather than focusing on eliminating disabilities. But to find ways to relieve symptoms and improve quality of life for people – those are the right reasons to support finding cures.

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