Thursday, February 6, 2014

The paradox of disability inspiration and may I admire you, please?


En route home from work last night, and it was a particularly fun commute because of the snowy weather, I had plenty of time to catch up on Facebook. I read this update from a young woman with cerebral palsy:

"So I am at the grocery store doing my errands minding my own business & some random lady comes up to me & asks about my leg & back brace. I explain that I have cerebral palsy & few other conditions that require such tools. She then goes on to explain that her kids also have CP & I am inspiration to her that I have graduated from college & am independent. I am far from inspiration I am just doing what I need to do to live my life."

I knew what she meant. But I knew what that mom meant, too.

In the last year I've read several posts and articles about so-called "inspiration porn," a term coined by Stella Young, editor of the excellent Australian disability news site Ramp Up. In We're Not Here For Your Inspiration she describes the phrase as "an image of a person with a disability, often a kid, often doing something completely ordinary like playing, or talking, or running, or drawing a picture, or hitting a tennis ball—carrying a caption like 'Your excuse is invalid' or 'Before you quit, try.'"

A meme Young points to as an example of inspiration porn

It's not limited to people

The purpose, Young contends, is so that "non-disabled people can put their worries into perspective. So they can go, 'Oh well if that kid who doesn't have any legs can smile while having an awesome time, I should never, EVER feel bad about my life.' It's there so that non-disabled can look at us and think, 'Well, it could be worse...I could be that person.'" She goes on to note, "Using these images as feel-good tools, as 'inspiration,' is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them. For many of us, that just is not true."

One of the things I want most for Max is for others to see all of him, not just his disabilities. To see the person. Inspiration porn turns kids and adults with disabilities into fantasy heroes, further widening the gap between them and others. Another kind of inspiration porn: exalting kids with special needs for participating in sports teams or going to proms. As the woman who writes The Squeaky Wheelchair puts it, "Inspiration porn allows disabled people to become a commodity, shared, tweeted, emailed, and cooed about for the sake of a public that wants to be 'inspired' by them, to see their everyday accomplishments and participation in life as an uplifting exception and not a rule." (Cara Leibowitz of Crazy Crippled Chick also has an excellent post on this, Explaining Inspiration Porn To Non-Disabled People.)

And yet: Here on the blog, I am always gushing over Max's feats. Even the smallest accomplishments are a big deal to me, like when he poured something last weekend. I share because I am proud of Max, and because I write to inspire other parents. Years ago, when Max was born, there weren't many blogs around and all I could do was message other moms on an e-loop for parents of babies who had strokes to ask how their children were doing. When did their child crawl? Walk? Could their child talk? How was his cognition? I needed to hear there were kids doing these things and making progress, because doctors hadn't left us with much hope. Now, when I get emails from parents saying that Max is inspiring to them, it makes me seriously happy. I keep the messages in a Gmail folder.

And yet: There are times when people who don't know our family, or Max, marvel over him, and it's made me uncomfortable. This past summer, Max was splashing around in a pool and a mom standing nearby said, "I just wanted to tell you, your son is amazing." I mean, I know that years ago he was terrified of pools and he overcame his fears, and years ago he couldn't keep his balance but now he ambles around in the water, but she didn't know all that. She just saw a kid with disabilities splashing in a pool, seemingly qualifying him for an Olympic medal.

And yet: I find inspiration in teens and adults with cerebral palsy doing everyday things. Ones who write blogs, go to college, have jobs, live independently. If I saw an adult with CP in a pool swimming, I'd be psyched. I am inspired because of the hope they give me that Max will do the same when he is older.

A commenter on that Facebook post I read on the train noted, "What I find weird is stuff that runs something like, 'You should never complain about things that are hard for you again because this person with a disability climbed a mountain.' In other words, the person with a disability is being depersonalized and being made to stand in for ALL HARDSHIP EVER. In this case the person is directly seeing you as a successful person with a disability similar to her kids, meaning that she sees you as a person first, which is pretty rad." The woman who'd written the post responded, "That is a really good way of looking at it. Thanks for that perspective."

I hope the adults with disabilities out there who rightly rail against inspiration porn can cut parents of kids with special needs a little slack. I don't mean to objectify you when I gaze admiringly as you browse in the bookstore (although rest assured, I wouldn't come up to you and gush), or when I tweet to an adult blogger with CP that I find her inspiring. I don't see your life as an "exception"—actually, I want my boy to someday have your life, the kind where he does everyday things like grocery shopping. If I consider the ordinary extraordinary, it's only because I am looking at you and envisioning my son.

Image: Flickr/Lady-bug

28 comments:

  1. This makes a lot of sense. I think there is a big difference between our understanding of what it takes for the special people in our life to GET to those milestones and finding encouragement in others who HAVE done it versus feeling sorry for or using those with disabilities as a motivation to be "better." Those with disabilities ARE better. They don't need to be compared to.

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  2. I think I'm sad Ellen because I thought you were one of the few parents who gets it...and maybe you still are...I have to think....humm. I guess it's the line about asking us to cut you all slack. Some of us are really hurt by the inspiration thing so we need slack.
    BUT I think two things are being confused - it's one thing to see someone and feel hope for your child. We all see people who give us hope and make us think of a bright future.
    But sometimes being approached by a stranger with that message can be
    awkward. I've felt ambushed at times
    But it's another when someone who has no knowledge or my life or no personal connection tells me I'm an inspiration just for ........just for even being out in public. I've asked people why they say that and it's either a family thing (which I do let slide) or more often a response such as "well, everything is so hard for you, but you just try so hard.' THAT is offensive because it assumes a lot about me and it reduces me to my body. Yes, walking or whatever may take more effort but to us, it's just the body we've always known. Chances are, we aren't even thinking of that but rather of any of the 1000 things that occupy anyone's mind. But even if we are thinking of it, maybe it's just one more thing and it's not this life colouring thing people assume (and I think the assumption is the big stinger). We still have lives even if they aren't perfect. Having a disability doesn't make a person want less out of life.
    And I've also had people actually say thing like 'you are such an inspiration and looking
    at you makes me realize I don't have any problem at all. God has blessed me' In that case 'inspiration is just a code word for "I'm going to use you to feel better about myself.
    I have no patience with that.
    And as a side note and an illustration of how wrong the assumptions of hardship are, I offer this....I underwent some unusual treatments as an adult that reduced my muscle tone. I still walk much the same, but the tightness is gone. At times, I feel really light and flexible. Yet during some of these very same times, I've been told how 'bad' I 'must'
    feel and how my life is a struggle. Those times really make me laugh because how I'm feeling and how I am experiencing my body is totally opposite of what they *assume.*
    This was a rushed post full of typos - and I really do like you Ellen even if I am a bit put off....maybe put off??? (I admit, I have issues about this topic)........ If you can make sense of this jumble, I'd love to hear from you.

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    1. I totally get why the inspiration thing can be hurtful. But the point I was trying to make is that it's different when it comes from the parent of a child of special needs. You give us real hope. We are not the people thinking, "Wow! She's trying so hard!!" or "Wow! She's overcome such hardship!" We are the people thinking, "Wow, you're doing exactly what I hope my child will do." Not because you are super-human, but because you are a vision of what we'd like to see in our own children someday. Does that make sense?

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    2. Ellen....
      While I cannot speak for Anonymous here, it makes perfect sense to me!! ;)
      --Raelyn

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    3. Thanks for responding.
      It does make sense. I do get it.
      I think it's just hard for use because it all runs together.
      Sometimes being called an inspiration is an insult.'
      Maybe we need a more exact language.
      All is cool. I'm still a big ole' fan of yours.

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  3. I may be overstating the obvious here, but everyone has rough days. I am the adult with CP who, for the most part has never let anyone's expectations of what I should or shouldn't do stop me. I am a librarian, who happens to have a significant mobility challenge. However, we had 6 inches of snow fall this week, and I am unable to leave the house independently due to the weather. The WC gets stuck easily. I sometimes let myself get really frustrated by the weather, because it forces me to rely on others. The reality is I'm sick of winter just like everyone else, and would love to move to Florida.

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    1. Emily....
      "I am the adult with CP who, for the most part has never let anyone's expectations of what I should or shouldn't do stop me. I am a librarian, who happens to have a significant mobility challenge.". You. Inspire me!! I've let people's expectations of what I should or shouldn't do stop me. And I haven't got any of your challenges!! You go, girl!! ;)
      --Raelyn

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  4. Perhaps the words we use are the problem. Rather than talking about being inspired, we should talk about how this person gives us hope for our children. We should talk about how wonderful it is to see them. We could mention how it's terrific to see someone who's part of our world. I'm the mother of an autistic child who has limited verbal but not cognitive skills. I'm always glad to read the words of others with autism because of the insight it gives me into my son's world. It makes me happy when they achieve because I feel like the world is made better/more accepting for those with autism. Perhaps your readers with disabilities or special needs could suggest other ways that we could respond.

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    1. I, as a person with a disability, think you hit the nail on the head.
      Giving hope or insight are different things than inspiration and it's
      baggage. Great post.

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  5. Ellen....
    You quoted Scott Hamilton!! As in the former Olympic figure skater? I love Scott Hamilton!! And I just remembered something!! As of, like, right now!! This quotation was featured in Scott Hamilton's book, "Landing It"--which I underlined--they were, if memory serves me, his Mother's words. ;)
    "It's there so that non-disabled can look at us and think, 'Well, it could be worse...I could be that person.'." First off. As a learning disabled individual, I never look at people like my dear childhood friend, for instance, who has cerebral palsy, and think that. Yet she does inspire me!! {Despite our paths having been severed} My friend cannot walk, uses a wheelchair, isn't toilet trained, needs tons of "support", and the only word she can say is a wholehearted "Hi". When my friend giggles? You just have to smile!! Much smarter than what people give her credit for, I saw my friend at our zoo several years back. We originally met at church but I had no longer attended that congregation. Our lives went separate ways. When I greeted this friend, she rolled back her eyes, squeezed my hands, and said "Hi". I believe that my friend remembered me after so many years apart!! You know what? As a misunderstood often made fun of oddball growing up, this very special girl was, easily, my most faithful friend of all!! Now that is inspiration. ;-D
    By the way. Max does inspire me!! He is one amazing dude!! ;)
    --Raelyn
    PS. Lest anybody wonder. I do love the idea of inspiration porn!! Way to go!! ;)

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  6. As an adult with CP, I have to be honest, I've struggled with this. On one hand, it annoys me that people think I am "inspirational" because I have a job, volunteer, etc. I don't view anything I do as extraordinary in any way; as stated in the blog, I am just living my life in a way I feel called to do so. On the other hand, when I meet someone and their view of differently abled people changes and they say it has changed because of me, I feel humbled in a way. Truth is I suppose, we all admire people for one reason or another. I know I admire a lot of people, some of whom lead very "ordinary" lives; it doesn't however take away from all they have given me. I don't know if I am making any sense

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    1. Laura....
      "As an adult with CP, I have to be honest, I've struggled with this. On one hand, it annoys me that people think I am 'inspirational' because I have a job, volunteer, etc. I don't view anything I do as extraordinary in any way; as stated in the blog, I am just living my life in a way I feel called to do so. On the other hand, when I meet someone and their view of differently abled people changes and they say it has changed because of me, I feel humbled in a way. Truth is I suppose, we all admire people for one reason or another. I know I admire a lot of people, some of whom lead very 'ordinary' lives; it doesn't however take away from all they have given me.". You. Are. An. Inspiration!! To me, your humility stands out as being admirable!! ;)
      --Raelyn

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    2. Makes perfect sense. In fact, you said what I was trying to say more elequently than I did.

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  7. This is just my personal feeling, but to me the difference between "Inspiration Porn" and something genuinely positive is all about context and depth. Facebook photos with gooey captions is "Inspiration Porn" to me. A totally random stranger giving a generic "drive by" compliment then vanishing is "Inspiration Porn".

    But a parent who thinks before they speak, and carefully, respectfully, and sincerely says, "You inspire me because I have a disabled child and seeing you as a successful adult gives me hope", I can't object to that. To me, that's almost Peer Counseling. Personally, I very much want parents of special needs kids to meet adults with disabilities, see what the possibilities are, and maybe engage in conversation about disability from the disabled person's perspective. But all that is the opposite of superficial.

    Setting is important, too. Obviously, if you want to avoid superficiality, then the supermarket isn't the best place for such and encounter. You're welcomed to feel what you feel when you see someone who gives you hope, but you don't HAVE to try and share your feelings with one or two hastily thought up sentences. The disabled person in that situation is, among other things, caught off guard. She's wondering where the olives are, and someone suddenly wants to talk about inspiration and what the future holds for disabled children. Not fair! Understandable, but awkward.

    Anyway, I'm very glad you wrote about this. It's helpful to get another perspective.

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    1. So true about being caught off guard - in that situation and in others when people out of the blue want to talk about our disabilities. Odds are that our minds are somewhere else and we're suddenly called on to explain a complex and very personal topic. We either have to answer (which often leads to more questions) or say we won't talk about it. Both options are awkward. Suddenly we are weighing two awkward options when we just wanted olives.

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  8. I know the lovely ladies who wrote both posts on inspiration porn that you referenced. This was such an interesting perspective you shared. I wrote a post breaking down an example of inspiration porn: Cracked Article is an Unusual Type of Inspiration Porn

    I have strong feelings against inspiration porn, but your perspective is so valuable.

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    1. Oh, and I meant to add: I definitely see the difference between the parent perspective and the "inspirational" memes that pop up all over the place. Though slightly different, even as a disabled person, I find myself inspired by other disabled people at times. There's such a delicate balance though, between being objectified and being shown genuine respect and admiration. This post definitely points to that.

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  9. There is the girl in my geometry class that has 2 hearing aids and uses an FM system.And no sadly we are not friends but I recently discovered the reason: My confindence. I am not afriad to talk about my FM and carry it along while she is. This probaly is partly due to the fact that I have been in the district and have known some of my classmates since Kindgergarden while shemoved here in the middle of 8th grade.(we are in 10th) Anyway she said I inspire her. It would be more awkward if it was someone without a disablity and not a person who shared it.(plus we have mutal friends and actually met b/c of our hearing aids, in the nurses office on her 1st day)

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  10. Ellen, like you, when I see Max or another child with CP or other disabilities being successful, even in ordinary every-day things, it gives me hope for our son Zac. Max is definitely an inspiration for me with regards to my hopes for Zac as they have many similarities. I do not see anything wrong with us parents being inspired this way.

    Kevin

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  11. Ellen, thank you so much for linking to my post about inspiration porn!! Kathleen, who writes "The Squeaky Wheelchair", is my very best friend and I'm sure she'll be thrilled as well!!

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  12. Ellen,
    I am touched and excited that you liked my blog. I love yours! And I love what you write here. If I can help parents see that the future is bright for their kids then my life's purpose is being fulfilled. xo

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  13. Ellen, as a fellow mum I understand completely as I've often struggled with this concept myself. I love Stella's words and attitude being a fellow Aussie too! I celebrate everything Cooper does and perhaps over the top sometimes but it's because of where he came from and that he does things over and above what professionals predicted. I too look at adults with cp doing everyday stuff and it's not that I'm inspired it just gives me hope and I'm mainly thinking of their parents and their journeys and relating to that rather than the individual themselves.

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  14. To me, all people are inspirational.

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  15. Exactly how I feel - the occasional bit of inspiration porn helps me to keep going as a parent, keep hoping, that one day the lives of my children will be an inspiration to others, because they are able to live it to the max xx

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  16. Ellen, I understand a lot of what you're saying here and I wasn't sure if you had seen this recent Huffington Post article from my friend Sarah. It reminded me a lot of your post but focuses on the tendency of SN parents to refer to their children as "heroes." Thought you might find it interesting:
    http://www.huffingtonpost.com/sarah-sweatt-orsborn/my-child-with-a-disability-is-not-my-hero_b_4689731.html

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  17. Very well said. And the comments here are so thoughtful and helpful. Also loved that you were featured on Rachel Held Evan's blog.
    Thanks for sharing.

    Heather

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  18. I think the purpose of disability inspiration is to make others say "I want to be (positive quality) like that person." It's not to say that you should feel lazy and apathetic because that person is (insert disability here) and content with their life when you aren't. For me, it's an excuse to actually practice and not watch Flight of the Bumblebee videos.

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Thanks for sharing!