There’s no doubt that the two videos RunDisney produced about Sarah Kate were meant to inspire people. The marathon and half marathon are on many people’s bucket lists, and with good reason: they present a challenge, within reach of ordinary people, that require a lot of hard work and willpower to complete. The #WhyIRunDisney video series features many people with unique stories and challenges, and not all of them are related to disability.
I saw it in comments after the February race, again when the first video came out in June, and once again when the second video was released last week – people stated that seeing what Sarah Kate accomplished made them realize that they should get their butts off the couch and get moving. People were inspired to start, to keep going, to continue to the next level … all because of a young girl, the last place finisher of a one-mile fun run.
But not everyone saw it that way.
A few folks – adults with disabilities themselves – grumbled that it was “inspiration porn” (if you aren’t familiar with the term, go read Explaining Inspiration Porn to Non-Disabled People by Cara Leibowitz). Many people in the disability community are frustrated by internet memes portraying people with disabilities doing ordinary things, usually paired with inspirational quotes (though I have to point out that the inspirational quote paired with Sarah Kate’s videos – “Finish Strong. Never Stop.” – was something she actually said, in her interviews for both videos, because it’s been her mantra for years).
I get it, I really do.
As Sarah Kate indicated in her blog post last week, she was surprised by all of the attention she’s received – it was “too much” – because she doesn’t understand why so many people care about her just being herself. Some people with disabilities believe, as the author said, that “inspiration porn” reinforces the notion that their disabilities are tragedies to be overcome, rather than just a different way of being, reducing them to caricatures rather than real people.
As the non-disabled mom of two children with disabilities I have a foot in both worlds, so I can see both sides.
I’m the most unlikely distance marathon runner in the world, because I have fibromyalgia and I’m lazy, yet I’ve completed seven marathons and even more half marathons (somewhere between 15-20…I’ve lost count). Sarah Kate has helped me finish all of those seven marathons and quite a few of the half marathons; I kept pushing because I’ve seen her push so many times. But it’s no secret that I despise the pedestal people tend to put us on, and the frustration about “inspiration porn” is drawn from a similar thought process.
I went back and forth on it for awhile, until a few days ago when it dawned on me that maybe Sarah Kate’s story (and others like it) shouldn’t be viewed as either/or, but as both/and. Can Sarah Kate’s story be both inspiring AND inspiration porn? I think her story is just her story – how it is interpreted depends on the audience.
For people who are struggling with a particular hardship (and make no mistake, even Sarah Kate would describe the events of the past seven months as a significant challenge) or people who’ve let their inner voices convince them that they can’t do something, a young girl who set a goal and did what it took to achieve that goal can be the spark they need to put their heads down and power through.
For parents with young children who’ve been diagnosed with cerebral palsy and who desperately want to know what may be possible for their child in the future, Sarah Kate’s success can become their goal, and when they are old enough, the goal of their children – Daniel Velasquez is a frequent topic in our house.
Sarah Kate’s story will be wasted on many people, because they won’t see the whole person, only the disability. But it won’t be wasted on all of them, and for those whose eyes are open to the reality – that Sarah Kate is an ordinary girl, facing an extraordinary challenge head-on, setting a goal, and achieving it – she may, indeed, inspire them to do and be more than they would have otherwise.
What I love about SK’s story is that she takes life and shows it who’s boss. She will experience many things in life where she is on an even playing field with everyone else, and she will surpass them. Given her particular disability, running is probably the activity where she experiences the highest level of disadvantage. But instead of being shy or resigned and accepting a seat on the sideline, she is willing to get in the race and run it to the best of her ability. That’s why we hold this last-place finisher in such high regard.
This: “she takes life and shows it who’s boss” is a great description of her, and it was just as good of a description of her when she weighed two-and-a-half pounds in the NICU almost twelve years ago. On her first full day of life, the nurse told us she was “feisty” and she has shown us that spirit over and over again.
I love it! Thank you for the clear message of “and/both”. Perfect!
to me it isn’t about disability per se- it’s about attitude. It’s about the kind of person Sarah Kate is becoming- as a young woman-
what is inspiring is character and perserverance in an 11 year old girl/
You know, it’s funny, I was going to comment on your last post talking about inspiration porn…and then you linked to my post! Thanks for that, btw 🙂
I really like when you ask “Can Sarah-Kate’s story be both inspirational AND inspiration porn?” I think you’re absolutely right and the difference is, as you said, in the audience and how it’s presented. I’m proud of Sarah-Kate, because she’s one of my “tribe”, so to speak, and she accomplished something that she really wanted to do, that other people didn’t think she’d be able to do. But all the media coverage and stuff, yeah, it’s inspo-porny.
People with CP can do anything they want to, with a creative mindset and accommodations. Sarah-Kate is proof of that. Hell, I’M proof of that – I’m 22, have had CP all my life, and I’m a college graduate currently getting my Master’s degree. And Sarah-Kate being a role model for other people with CP is way different than her “inspiring” the “normal” population. Having role models that look like you, move like you, is important and it’s one of the reasons I am where I am.
Having said that, I know I’ve offered this before, but if Sarah-Kate ever wants to talk to someone older with CP, I’m here. I remember being her age, not a fun time.
I was hoping you would come over and share your thoughts – I think it’s important for those of us without physical disabilities to consider the opinions of those with them. I hope in the future that Sarah Kate will be willing to offer up her own thoughts here. And I haven’t forgotten your offer – I’ve mentioned it to her, too – but right now I think she’s just good being herself and figuring it out on her own. 🙂
I didn’t know the concept of “inspiration porn” and I totally agree, thanks for sharing!
Okay, so let me be honest here, I stumbled upon your blog one day and have followed ever since. It’s probably been about two years. Why? Don’t know completely. I have two quote/unquote “normal kids”, but I do have a friend with a son who has autism. Not the same as your kids, I know, but yet it is, just like my kids are the same.
What I mean by that is, when sharing, you often show your kids as “normal”. They are awesome. They are funny. They are loving and beautiful. They are onery and moody. They are everything in between.
Mine are too. So is my autistic little friend.
I like Sarah Kate’s story because she is tenacious. Despite her road blocks she just keeps going. I like it when my kids see me reading your blog and want to know how she is doing (I have a daughter the same age, by the way). I hear things like “Did she raise all the money she was trying to get?” “Was she able to finish this time?” “She can ride a bike? That’s so awesome!” all the time.
When they in turn see a child with a disability at the store it’s not odd or scary. It’s normal. They say hi. They strike up a conversation. When our little friend is at church they greet him, love on him and offer to let him in on their games/conversations/etc.
So I suppose the point I am making with this rather lengthy little comment is Sarah Kate’s story helps others, period. She may be a kid with a disability, but really she is just another kid trying to find her way with the struggles that she has to overcome. I’m better because her story is shared. My kids are better because her story (and Nathan’s, can’t leave him out!) is shared. I’m sure hundreds of others are too.
This may be one of the best comments I’ve ever received. I loved reading it right up until you started talking about your kids … and then I almost cried. We are incredibly normal and ordinary and kinda boring … just like so many other people. I could rail about injustice (and make no mistake, I’ve done that here a few times), but I think it’s more important to just be us and provide a little vignette into disability for the world to see. It’s a challenge, yes, but it’s not scary or tragic.
So thank you for letting me know that I’m succeeding in what I set out to do here. It means the world to me.
I don’t like this kind of elitism. Everyone has the right to share their story and if you don’t, that’s fine.
I’m the autistic band girl in three honors classes and I don’t want to be inspirational for the wrong reasons. I want to change people’s perceptions for the better and give other autistic people a new outlook on their potential. Ignorance is the tragedy, not disability. I like Sarah Kate because she is in band like me. Even in the disability world, it seems that all you hear about is sports, sports,and more sports (not trying to denounce athletes). We need musicians too.
You, know what, Anna? I had never noticed that before, but you’re right. I come across a story every now and again about a musician with a disability, but they are few and far between. Sports and homecoming queens are much more prominent. Thanks for sharing your thoughts.
For me, the difference between inspiration and inspiration porn lies in the details. Inspiration is seeing someone struggle to achieve a goal (especially if they succeed, but even if they don’t, as long as they finish ahead of where they started); inspiration porn is seeing someone with a disability do something “normal” that has nothing to do with their disability (or that used to be difficult for them, but is now just as easy for them as it is for everyone else). Similarly, inspiration is seeing the struggle, seeing the sweat, and seeing the person’s success (whether or not they “succeed” in the average way; had Sarah Kate’s goal been to finish half the Kids’ Mile, that still would have been a success in my book). Inspiration porn is seeing a snapshot–often literally–of a single moment in time, without any context of whether or not this achievement was a difficult thing for the particular person. And, finally, it’s about intention: Sarah Kate has every right to be proud of herself, and you as her champion do, too: she’s worked her butt off, and continues to do so, so that she can participate in the activities she loves. Inspiration is seeing someone work hard towards a goal, and feel that if someone else–with or without disabilities!–can work that hard, overcoming obstacles placed in their way, to make their dream come true, so can the rest of us. Inspiration porn is nearly the opposite. Rather than humanizing a person, the way Sarah Kate’s fights to meet her goals do, it makes the “inspiring” no more than a guilt trip: “If this [insert ugly word here] can do something other than lie around in bed, why can’t you?”
I am proud to say that I sent a link to Sarah Kate’s first runDisney vid to a friend of mine who was training for last weekend’s Avenger’s half-marathon. I didn’t do so because I wanted to shame her into training, as inspiration porn does; rather, I did so because I thought she’d get a kick out of seeing someone working towards a goal so similar to hers (a Disney run), while facing down all the challenges being thrown in her way (Sarah Kate’s CP and her continued recovery from surgery; my friend’s injuries and other issues that twice halted her training, making it questionable whether or not she’d be ready to run 13m by race day). I’m also happy to say that my friend watched the video in the spirit in which it was meant, telling me how cool she thought it was that Sarah Kate didn’t give up even though things were hard, and that Sarah Kate’s attitude–as opposed to her disability–was inspiring to her.
(Oh, and, a note on slogans: in general, I think that easily-digestible slogans are a hallmark of inspiration porn. However, since Sarah Kate actually lives by hers, as opposed to having it simply slapped on her, I think we can give “Finish strong. Never stop.” a pass!)
Beautifully articulated!
I have been a special needs mom for over 24 years now and have never even heard of inspirational porn! You’ve raised an interesting question for me. Your daughter had set a goal and achieved it. I think that’s inspirational in and of itself, and certainly more so because of her challenges. The world can certainly use more positive, uplifting, and inspiring stories rather than some of the ugliness we hear about. If she can inspire others to see beyond her disability or make others think twice before they treat a person with disabilities unfairly then that’s a good thing in my book!I’m sure Sarah didn’t set out to achieve her goal just to get attention. I sometimes think the critics just make too much of a big deal about these kinds of things. Congrats to Sarah for setting her goal and achieving it!
A case in point. SK is tough. She lets nothing get in her way. She had to do this just to live. It is part of her and who she is. I live with that toughness. Preemie born is that way. We tend to let nothing get in our way, we suck it up and find a way. Not elegant, but we get it done. I did that myself today. Had an adaptive climbing event and a wall to overcome. No tumble out of bed this morning, nor hip out of socket gets in my way. Because, like SK, that is how we roll. If I want it hard enough, it gets done. Crouchy gait, bum joints, scissoring gait or not. Life is a BULL! I ride the BULL, I get bucked off the BULL. I get back on, I dig in. I ride the Bull. In my case, great instructors and an alternative harness. Getting vertical no trouble. More than one way to meet your goals. SK does just that, she takes what life dishes out, she sucks it up, she rides on. No one should expect less. Get er done! Cerebral Palsy she has, but does not define SK any more than it does me. Hard Work nets goals, so does being tenacious. Hips today and bruised bodies are no excuse, I got thrown off the bull, I got back up, I rode on and got it done. SK is exactly this way. And thusly she is admired by many, myself included. Never Give Up, Finish Strong. Never Stop. SK does not, I don’t either. And neither should anyone else. You want it, work for it.
Beautifully put. I really like the bull riding analogy! Do you mind if I use that in a future post?