Wednesday, August 7, 2019

This viral video gives people all the feels but is that really a good thing?


This video of a six-year-old with cerebral palsy at a water park, posted by his big sister last week, has gone viral. It shows the most ordinary thing in the world: friends helping a friend. The thing is, it's not so ordinary.
I know why this girl was so thrilled. It is all too easy for children with disabilities to get left behind or left out of the fun, as I know from my experiences raising Max. "It made me so happy that kids his age were able to see beyond a disability and just wanted to help their friend have fun," Mikaila told Fox 5. "Instead of running ahead of him to get on the water slides they made sure he wasn't left behind."

When we went to birthday parties when Max was a little guy and not yet walking, the other kids would zoom by him, oblivious to his presence. At the park, kids might stare curiously but none would approach to include him in their play. It was typically me who'd initiate interaction.

That's a problem.

I can understand, too, her appreciation that her brother with CP has friends. Max is one of the more cheerful people on the planet and yet, he has never had close friends. He is friendly with the kids in his class,  with my friends' children and ones who have partnered up with him through programs. But not a BFF.

That's a problem.

I can also get why this video appeals to the masses: It makes some people feel good to see kids being nice to a child who people might consider unfortunate or pitiful because of their disability. When videos make the rounds because people elevate ordinary acts into heroic ones, it's a phenomenon known as "inspiration porn." Writer/activist/speaker Emily Ladau recently did a great piece on it for New Mobility magazine. "People can read or watch inspirational stories, click the 'share' button, and go on with their day," she writes. "But what happens after the quick hit of warm, fuzzy feelings? They may be moved to grab tissues in that initial moment, but most likely sure won't be motivated to take real action."

That's a problem.

Obviously, when you are a loved one sharing this stuff you only mean it in the best of ways. You're overjoyed for your child, your brother, your sister. You know what the realities of life can be like for them, and it's a thrill when the opposite happens. I've written here about people doing seemingly ordinary things for Max, like that time a family in our neighborhood was taking a walk and offered to let him come with them. If this were typical, I wouldn't have written about it. But it's not typical.

As parents of children with disabilities and their siblings, we'll certainly continue to express our happiness for our loved ones when Good Stuff happens. But perhaps, instead of just heart-ing a video or sharing it, people can press the pause button in their heads and consider just why they are so moved by a video of other children helping a boy with CP into a splash pond.

Ask yourself these questions:

What does this post or video say about how I view disability?

If the object of this video was not a person with disabilities, would I feel the same?

Wouldn't it be great if what happened in this video was typical—so much so that it wouldn't merit  viral-ness?

What can I do to help?

Perhaps those of us posting videos celebrating moments like this can ask viewers to consider that the world needs to be a generally more welcoming place for our children, or however you'd like to phrase it.

Perhaps parents of children who don't have disabilities could use the video as a learning opp; it could be the kickoff for a great conversation about lending a hand as necessary to others and also about the ways children with disabilities are like them.

If you choose to share a video like this, perhaps you could tack on a remark like "Wouldn't it be great if this were such an ordinary thing it didn't go viral? Encourage your children to treat ones with disabilities like any children, lending a hand as necessary" or some such.

Emily Ladau offers this advice: "What if...we stopped to consider if the story we're sharing truly empowers the disability community? What if, instead of expecting our community to accept how the world sees us, we expected the world to welcome disabled people as we are? What if, instead of perpetuating clichés and stereotypes, we celebrated the human body in all its forms and functions so that no one would ever feel like they're not enough?"

Think about it.

Related: I wish this viral video hadn't made you cry

7 comments:

  1. As a person with a disability sometimes I honestly get sick and tired about hearing inspiration porn applied to every little thing or the notion that we have to be treated 100% the same as someone without a disability. I want my needs met, I want my identity, which includes my disability, recognized. I want people to understand that there is no disability community but rather a plethora of people with many different disabilities and opinions on disability and non disability related issues. Some of this advocacy feels self defeating and very much like erasure. Being "color blind" certainly does not equal a racially just society. Neither does ignoring the fact that disability impacts how lives are lived. By nature most young children don't stop to wait for others. Their braine and bodies aren't wired for it. I see no problem sharing a story where 1) these young children went against that and were concious of the needs of someone else and 2) a child with a disability has friends who wanted him with them. I didn't have kids who waited. I didn't really have friends. It sucked. I get it. Some people will see that post and go "oh look they are being nice to the poor disabled boy well I guess we don't need to worry about disability rights" linking something innocent and good like a sister who is happy that her brother has young friends who understand and can meet his needs just makes people afraid to interact with us. Why would anyone want to have a friendship with a disabled person if there are many, often contradictory, rules imposed by internet personalities that claim to speak for "the disabled community"? I appreciate that some parents are listening to adults with disabilities but I think it's important to understand that there can and are multiple perspectives and that the loudest voices are not necessarily representative of everyone or even a majority of adults with disabilities. When I see a video like this I do see it differently because it involves a disabled child. I feel so happy for him, that he will grow up with friends and a loving sister. Not everything featuring a nice or positive story with a disabled person is inspiration porn. And it's okay to recognize that helping or including someone with a disability is not always simple and does not come with a handbook so when it's done with genuine love it's good to share because it can help others be less afraid to try.

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    1. Jamie, this is so thoughtfully and powerfully said, thank you. You are completely right, this is a sweet moment captured by a loving sister. I just get bothered by the way people (including the media) spin these videos, and wish that people would think beyond the video. As the parent of a child with disabilities, I come at this from the POV of wishing that parents and people who saw this wouldn't just find it heartwarming but might come away with some bigger-picture thoughts about how to treat children with disabilities and/or teach their children to do the same. Maybe that's a lot to wish for from one sweet video. But if it's going to go viral, well, a mom can hope.

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  2. I agree. Sometimes inspiration porn goes too far. Sometimes something simply feels good and should be shared just for what it is. Simple as that.

    Sometimes I feel as a disabled person that I cannot share or be proud of my own accomplishments because my disability will be as visible as whatever I post. I do think that the negative of inspiration porn is that it creates fear of interaction on both sides.

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    1. I am sorry you feel that way—I'd never considered this flip side until I read what you and Jamie had to say. You should feel as free as anyone to share your triumphs.

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  3. As a parent of a 13 year old son with cerebral palsy, I think this video is essential to helping the general population- children and adults, better understand some of the challenges kids with CP face. Due to areas of both high and low tone in his muscles, my son's gait is clearly compromised. There have been so many times when he could have used support from a friend, both physically and emotionally. Despite the fact that I've been an educator for almost 27 years, until I had a child with physical limitations, I too had no idea of the struggles it would present. While this should be the norm instead of the exception, change takes time.

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    1. Oh, man, I truly hope that's what most people would get from this video, but I'm just not so sure. I think you'd view it through the lens that you generally view people with disability, and if you feel sorry for them, then you might just have your "awwww" moment and move on. The more as parents we speak up about others giving our children support they need, the better for them.

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  4. As a mother with a son with CP and autism, I tend to look at the intent behind the videos/posts. If it had been posted by one of the friends’ families as a “See how great my kid is!” moment, I would have struggled.

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Thanks for sharing!



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