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| Mu in a green hoodie, in mid-stim. ©K. Cevik posted with permission of the subject |
Silly me, I thought this was a random act of kindness.
So let me give you all some backstory.
Remember when Eddie Murphy did a satirical sketch on SNL called "White Like Me" , where he posed as an undercover white man for a day to see how the other half lived? One of the premises of the sketch was that "white people gave one another things for free." Casey Neistat, a YouTube personality, and influencer marketing millionaire is the consummate first person singular branding of the white man that makes Eddie Murphy's mockumentary true.
Casey Neistat is the persona of the white dude who people give things to for free.
Mr. Neistat got a free upgrade to a $21,000 first class seat on Emirates airlines and his vlog episode about it went viral. He's been 'gifted' high-tech toys like drones to test (sometimes before they are released for public consumption) and as a result, he is able to stage the occasional giveaway of said gadgets. He has a legion of loyal subscribers to his YouTube channel following his every adventure.
I subscribed, wondering what all the hype was about. I can tell you, the man knows how to tell a story, and how to turn any product placement into an anti-ad story that just happened to fall into the greater story of his day to day life.
Mr. Neistat also flexes his Internet influencer muscles by lending his massive following to some crowdfunding efforts. What he's learned is that he has tremendous power to reach people and get them to act for good and millions of people trust the Casey they see on his vlogs. These efforts when added to self-deprecatingly candid vlogs also humanize him enough to keep his audience from hating the things he gets 'for free', like the $18,000 a night hotel room upgrade he tweeted and vlogged about:
I stayed in a hotel room that costs $18,000 a night. seriously. https://t.co/3sJsJgZqF9 pic.twitter.com/JAftWVL7tB— Casey Neistat (@CaseyNeistat) May 19, 2016
Because his brand is being that white dude who went from a high school dropout to being a millionaire by just working hard at being a dude and doing what he's always wanted to do he manages to exude the chill dude tooling around NYC on his boosted board who no one has a reason to hate.
Mr. Neistat's latest philanthropical giveaway/ad for Nike/ad for YouTube caught me off guard. Here's his giveaway story:
I foolishly tweeted away advice and concerns and basically only realized too late the intent here was audience share and inspiration porn, and neither Nike nor Neistat would care a whit about some parent of some nonwhite nonverbal non-target audience autistic teen nor her views on why objectifying disabled people or asking them or their family members to clamour for a single pair of free shoes was degrading to their dignity. Meanwhile, a week later, the story of the wonderful HyperAdapt shoes just happily ending up in a good Christian visibly disabled fellow YouTuber's hands was serendipitous Hollywood film ending stuff:
The Neistat giveaway and triple marketing win for him generated headlines that read, "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers." By generating excitement then giving the shoes away to a fellow YouTuber who fit the profile of looking disabled enough to "deserve" the shoes and be inspirational enough to post a great gratitude story video, the entire event gave unsolicited advertising points to Nike, improved Casey Neistat's brand, promoted a fellow YouTuber's brand, and offered up just the right dose of inspiration porn for all. The only foolish person in this little social media adventure was me.
What was I thinking? I tried tweeting to Neistat. He completely ignored me of course. Nike, Neistat, and YouTube had their moment of disability inspiration porn, and a deserving disabled white male got a great pair of high-tech shoes out of it that as he [Dustin] put it, will last a very long time because he's a wheelchair user.
They never saw the incongruity of $720 shoes that 90 percent of the people who need them could not afford to buy, maintain or use. Autistic teens like my son, who can't speak to lobby for free shoes would not be viewed by Neistat as disabled enough because he wanted someone physically disabled. Everyone needed to say, "ah, now that person is truly disabled. He deserved those $720 shoes." The visibly disabled person could not, however, have a developmental disability. That would be uncomfortable for this massive audience. So while I was tweeting away about dignity for autistic teens, poverty that made this assistive technology inaccessible to hundreds of autistic adults and young people, the terrible risks of owning $720 sneakers in the neighborhoods most disabled people have to live in, and the idea that even if by some miracle someone could afford these shoes they would most likely be stolen from them or sold to cover rent, food, or critical medications, Neistat and Nike continued blissfully ignoring me.
I should have seen the ignoring happening. But when you're tired from being the primary caregiving parent for your disabled son and you filter technology through the lens of how much actual help it could be for your offspring, you miss clues that you are the interloper in a smoothly run giveaway promotion.
What I do next is a Hobson's choice, really. If I asked Neistat to go learn about Autism, he'd go off to Autism Speaks or TACA and come back with more inspiration porn, pushing medical model rhetoric. So I am here with lessons learned for all of you, knowing that Neistat and Nike will never read this or learn anything from it, but glad to know I may in writing this takeaway something beyond my own time-wasting tweets on disparities in affordable assistive technology.
1. I believe it is about time we begin really writing these companies and letting them know that most autistic children and adults can't benefit from their products if they can't afford to buy them. Footwear meant to be assistive tech must be affordable.
2. Somehow we must set the limits on objectifying our disabled loved ones. Much of this centers on the idea that many adults who become disabled later in life internalize ableism and have no issue with being objectified and used in this fashion. I am absolutely pro-disabled Youtube creators with their own channels. As long as they realize all wheelchair users are not a monolithic group, and individual experiences, while valuable, cannot be generalized to everyone. We need to be asking ourselves how to counter internalized ableism in people who aren't born disabled.
3. What is and isn't inspiration pornography? Where is the line drawn? Is all inspiration porn bad? I don't have the answers to those questions but need them.
4. We need better ways to let the public know what invisible disability is, and ways of demonstrating that developmental disability is as valid a label as physical disability without humiliating our loved ones. I would not have publicly debased my son by detailing private health information on a global public forum in exchange for free shoes, regardless of their cost.
5. I would like to see assistive technology work grow to a collaborative environment not based on pity politics, but based on the idea that easier ways of doing any task benefit all of a society, therefore, including disabled experts without using them for inspiration porn would be the best way to engineer solutions that help them navigate the world.
Here is the big lesson for me, Kerima Cevik, autism parent. I need to realize when a headline like "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers" is just a marketing ploy and not try to explain what real world problems autistic people of color and their families have to people who don't really care. The time I wasted trying to get through to companies and personalities who don't care what it means to navigate the world as nonverbal autistic person of color could have been better spent with my son.
Peace.
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