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.

Guest Post by Ellen Ladau: Mother and Daughter – Same Disability, Different Experiences

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years. 

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog.  The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now.  My parents are unaffected by Larsen syndrome (LS); same for my older brother.  But I have a younger brother who like me has LS.  It was his birth that led the doctors to suspect a genetic disorder.  However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder.  This means that both parents must have the defective gene for the condition to be passed on to a child.  Now flash forward to when I became engaged to my wonderful husband Marc:  we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child.  But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected.  Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children.  And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation.  But incredibly she has matured into a much more positive, confident, and outgoing person than I am.  While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation.  Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives.  When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS.  We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us.  They were, and a flurry of letters soon went back and forth.  Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child.  The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations.  For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living.  And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!

Just One of the Guys – A Critique of the Wheelchair Basketball Guinness Commercial

I think it’s safe to say one of the first things students learn in Marketing and Advertising 101 is that one of the best ways to pull viewers in is to tug at their heartstrings. A prime example of this approach can be seen in a new commercial for Guinness beer.

As I started to watch the ad, I was impressed by the accurate portrayal of a wheelchair basketball game, enough so that I could (almost) overlook the sappy background music. It was even okay when all the men but one got up from the wheelchairs, because it’s not uncommon for nondisabled people to play wheelchair sports, and when they take it seriously, it’s definitely not offensive. But then, as the men exit the gym, a deep voice goes on to say: “Dedication, Loyalty, Friendship…The choices we make reveal the true nature of our character.” To me, this seems to relegate disabled people to the status of a community service project.

The brand’s tag line, which is shown at the end of the commercial, is “Made of More.” Of course, this refers to the beer, but there is arguably a double meaning behind it. When a commercial makes you feel warm and fuzzy, you’ll associate those positive feelings with the brand that’s being promoted, thereby making you more likely to buy the product, which in this case, is the Guinness. Essentially, the underlying message of the ad is that it demonstrates good character when an able-bodied person befriends a disabled person. Those who do so are “made of more.”

At the end of the commercial, all the men who were playing basketball are hanging out and drinking Guinness. If Guinness had made a commercial in which a bunch of guys were out on a Friday night drinking together, and one of them just happened to be in a wheelchair, that would have been great. They could have made an inclusive ad without making it seem like spending time with a guy in a wheelchair means you’re a good person. He should have been just one of the guys without calling so much attention to it. Personally, if I made the commercial, I’d have had an empowering rock anthem in the background, eliminated the sap, and then after the game the guys would have gone out for drinks. That would be have been an awesome commercial.

Instead, Guinness objectifies disabled people. The message that choosing to be friends with a disabled person makes you a saint is constantly perpetuated by the media and it needs to stop. Disabled people are not here so we can make nondisabled people feel good about themselves. And yet, that’s exactly what this commercial seems to accomplish. You don’t have to take my word for it though; just read some of the comments under the video in the link I shared and you’ll see tons of people saying things like “this brought tears to my eyes” or “this was the nicest thing I’ve ever seen on television.”

Nicest thing for whom? Nice for you, the nondisabled viewer, because you can sit on your couch and feel momentarily good about the state of humanity? Would your eyes still well up with tears if the commercial showed a bunch of sweaty dudes without wheelchairs playing basketball and grabbing a beer? That doesn’t sound like a tear-jerker to me!

It is clear that the commercial tried to show the men building each other up and supporting each other, which is absolutely a great idea, but I question if Guinness considered how dehumanizing it actually is for disabled people to be depicted as needing kindhearted non-disabled people to pay them some attention. The friendship between the guys in the commercial is certainly portrayed as genuine, and that’s admirable, but why is friendship among diverse people so emotional and inspirational? That should be the norm…it’s 2013!

Including disabled people, whether in real life or in the media, is fantastic and definitely necessary. I’m obviously a huge advocate for inclusion both on and off the screen. But it’s time for advertisers and other media outlets to do it right. Disabled people are just people, not your good deed for the week. By representing inclusion of disabled people as inspiring, this both reflects existing social stigma and can cause nondisabled people to continue to subconsciously perceive us as somehow being less than. It’s time for disabled people to be portrayed realistically instead of stereotypically, because ultimately, everyone on this planet, disabled or not, is just one of the guys.

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