He’s no Super Hero

There is an odd little “Frankenword” getting around the disability community blogosphere.

Inspiraporn

It’s short for Inspiration Pornography. This (mostly derogatory) term refers to the concept that, in an effort to turn the tables on negative stereotypes around disability, proud, advocating parents thrust their kids forward as being somehow other-wordly, divine or more special than the average kid because of their disability. Think: memes about our kids or “feel good” stories about people with Down syndrome doing things like getting married and so on. It’s a concept that comes from a place of love but critics claim that this stuff sells our kids short and that stories of people with Down syndrome doing things that everyone else does should not warrant a spot on the nightly news.

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I have umm-ed and ah-ed about weighing in on this debate for the best part of a year.
Partly because I’m not great at drawing a line in the sand on any issue. I am always ready to throw out a working hypothesis in the face of new evidence to the contrary.
Partly because I do not like holding up another writer/parent’s opinion or work and encouraging others to pick holes in it and publicly berating them for their approach.
But mostly because I am certain that any stance I take will probably be proven to be totally hypocritical in more than one of my future or past posts! Lets face it, I’m sure there are several critics out there who would consider my entire blog to be Inspiraporn.
As a result, I have always opted for the vague, non-committal approach to controversial topics. I find it really hard to have a definite opinion on any issue. I can always see the pros and cons to both sides and I don’t like having to pick sides!! I always reserve the right to pick a little from column A and a little from column B.

However I can’t really let this one go through to the keeper…..

I recently became aware of a book being developed that will celebrate the qualities and achievements of children with “chromosomal abnormalities” through stories and photographs. I don’t actually have a problem with this idea. I don’t think that raising awareness is inherently bad. This is what I set out to achieve with my blog too. I write to show how very ORDINARY our lives are which is under the umbrella of Raising Awareness about Down syndrome. I follow the theory that the more people know about something, the less they have to fear and then understanding and acceptance should naturally follow. (That’s the theory anyway)

The aim of the book is to change the language that we use around disability. To start seeing difference as something to be celebrated and to turn the focus towards the things that kids with a “chromosomal abnormality” can do instead of all the things they can’t. I have no problem with that. My problem comes from the fact that the book is labelling these qualities and achievements as Super Powers. This makes me very uncomfortable. I can’t see how swapping a negative stereotype about disability with an overly positive stereotype is helpful. It feels like a step too far in the opposite direction.

Using language like Super Power to describe qualities or achievements is just sticking our kids into yet another box. Ok, the box might be sprinkled with glitter and have a pretty bow tied around it but it is still a box. It still sets our kids apart as being somehow separate from the rest of society.

This language also gives people permission to overdo the sickly saccharine platitudes that well-meaning strangers feel compelled to offer up when you are out doing something as unremarkable as shopping. If someone flipped their lid about how much of a Super Hero Wade is for climbing a set of stairs it would really freak me out. It gives permission for the assumption that it is absolutely amazing he can achieve anything at all. This is the complete opposite of the approach I take with Wade. I presume that Wade is capable of anything. I expect good behaviour and expect that even though it might take longer or might be more difficult, I know he will achieve new skills all the time.

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I think it’s ok to talk about the path that a child with a disability might take to achieve something that other kids take for granted, (as I believe this book aims to do). I think it really helps people understand why a person with a disability might do things the way they do. I also think it definitely ok to celebrate these achievements. When Wade took his first steps a few months ago, there was much yelling and jubilation. He had been trying to walk for so long and it felt like it was a long time coming, but to call that achievement a “Super Power” takes all the credit away from him and makes it appear miraculous rather than the result of all of his hard work.

I think it’s possible to be proud of our kids, celebrate their qualities and educate the wider society about what our kids are capable of without elevating them above and beyond the status of mere mortals. I want people to see Down syndrome as an unremarkable, everyday occurrence in society not convince people they have just been touched by an angel.

Wade has many amazing qualities. Maybe some of them come from the extra chromosome, maybe not and maybe it just doesn’t matter anyway. I’ll admit that a lot of the time his ridiculous levels of cuteness and his ability to charm everyone he sees is a bit of a traffic stopper, but he’s no super hero.

He is just a kid.
I am just his mum.
And we just live our lives.
We don’t want a cape or a medal for that.

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22 thoughts on “He’s no Super Hero

  1. Hi Leticia I really enjoy your blog but being a Granny (of 9 month old Ella who has DS) I can’t seem to get the WordPress comment going so I’m just letting you know – hope this gets to you, Cheers Tina

    Sent from my iPhone

    >

  2. I so agree with you Leticia! I also want to add that I am also annoyed when well meaning people say things like – ‘you (meaning us parents) have done such an amazing job with Jack!’ – when really Jack is the one who deserves credit for his accomplishments. ‘You must be proud’ is perfectly ok as it is something we say to indicate not only something notably positive in the person but also job well done to the parents. Agree – we are not wearing any special suits or capes here!

  3. While I’m sure I’m guilty of inspiraporn, I do agree with your sentiments. I sometimes think it might seem like us parents of kids with ‘special needs’ are hard to please, but at the end of the day, we just want our kids to be treated like any other kid – no need for negativity, or the excessive platitudes. There are some children who face extraordinary challenges and I think it’s fair for them to be acknowledged for their resilience in the face of adversity. But, you’re right – chromosomally enhanced does not equal a superpower, and I’m no saint for being his mum either. PS. Wade is traffic-stoppingly gorgeous though x

    • I know! I struggle with the idea that if I push too far people will just think they are damned if they do and damned if they don’t but I guess the message is about balance and respect.

  4. Yes! Agree with everything.

    I’d never gave considered your blog inspiration porn, however. More importantly, I wish the term weren’t so objectionable to people because it is a good dialogue to have. Good intentions or not, we’ve all got to be careful and I don’t think it is so bad to debate these sort of things as long as it is respectful like your post. 🙂

    • Maybe that’s the actual problem right there. By giving it a name (inspiraporn) it then assumes that it is a thing. That then means people feel the need to be for it or against it. Then people need to decide if one example is it or isn’t it to work out whether they are for it or against it!!!! I think it’s more fluid than that and a lot more grey than black and white. This is why I haven’t been able to weigh in before because I think some aspects are ok and some are a bridge too far. Yet I still agree that everyone can have their own opinion and has the right to voice it…..does that clear things up (????!!!) ;). Anyway, it’s definitely a debate worth having.

      • See I struggle with this. On one hand I too think that all this energy fighting about the semantics and the actual phrase seems pointless. On the other hand, there’s power in naming something right? Like racism. It labels the phenomenon and says, yes, this is happening and is not good. Without calling it out, how could we go about combatting it? But on the other hand I feel like it becomes a bogeyman and people often end up arguing about the label itself “I’m not racist, but…”

        Anyways. That’s my conflict. And I know some people just hate the term “porn” being put on anything, so there’s that. 😉

  5. Very thought provoking as usual! The two things that occurred to me reading this is firstly, that its funny how many of us with kids with DS are constantly trying to reinforce that our kids are normal and ordinary, yet so many with medically normal kids are trying to reinforce that their kids are special and extraordinary.

    Secondly, I hate the whole idea of superheroes – its a fascist fantasy where superhumans are so morally pure that they deserve to be above the law, keeping the immoral poor from ruining things, see Batman for evidence. However, I do think that people struggle to find the right language when they want to be supportive and that when strangers come up and tell me that Evie is extra special, emotionally and politically I think they are really coming from the right place. I think its part of the slow process of inclusion. One day hopefully it won’t be remarkable at all to walk through a shopping centre with a child with DS, but right now it still is.

    • Ha! Some great insights!! Love the idea that we want our kids to be ordinary and every one else wants their kid to be special!! I guess we both want it to be genuine and not from a place of pity or awkwardness.

  6. Love this entry! Great perspective and so well written. Thank you. Ps. It’s rare to see Wade without his glasses but he looks super adorable with or without them!

    • Thanks Angeline! I took these photos while he was slashing around in a bucket of water on one of those really hot days so he didn’t have his glasses on. Got these two great shots but the rest were not so good. His glasses are gorgeous but I do love him without them too.

  7. Completely agree. The challenge we have is having people recognize that individuals with Down syndrome are human beings. But I struggle just as you say. I’m critical of describing children with Down syndrome as “angels” because angels are not human. But, what did I say when I came home last night and greeted Juliet: “Hello, my angel.”

    • Yeah, I think that’s different though. You can test it by asking whether you would call her angel if she didn’t have Down syndrome…and of course you would! You aren’t calling her angel BECAUSE she has DS. You are calling her angel because she is beautiful, DS or not. I guess that’s the distinction I try to make. Wade gets lots of attention when we are out and most of it because he IS very cute. It’s when we get EXTRA attention just people think we need extra encouragement or something, because he has DS, that I find uncomfortable.

  8. Pingback: From the News Page: Inspiraporn, the State of the Union, & Down Syndrome Health Care Guidelines — Down Syndrome Prenatal Testing

  9. I agree with your post in theory. Here’s the thing – I recently wrote a post titled How I Told My Seven Year Old Son He Has Down Syndrome. I told him he had super powers. In fact Down syndrome super powers. I did that because the center of his universe is The Avengers. So I took something that has great meaning to him – a group of people perceived as flawed who do heroic things. My explanation was Fanboy not abelist. That explanation was specific to my son. If he worshiped Legos I am not sure where I would have gone. When my son hears the words Down syndrome now he flexs his muscles. My son has been teased and mistreated by a couple ed techs. The fact he goes to school everyday with his head held high is heroic to me. Not because he has Down syndrome but because he kicks ass. I do not see my son as special. I see him as powerful. ‘Super powers’ is part of our vocabulary now for everyone not just people with Ds.

    • Hi and thanks for your comment. I have read your post before and I must admit that I didn’t have it in mind when I wrote this one. Reading back over it now I completely agree that you, as a mother, have chosen a path that suits you and your son best. As you say, it comes from a desire for your son to connect with something that he has a personal interest in, and connection to, which makes perfect sense. While I will admit that the phrase Super Power is not one I would use personally, I feel like the example I am referring to in my post is different to the one you have given. The book is using the phrase as a call to arms for systemic change to the language that we use for disability and it is this that I disagree with. Your example is specific to your son’s opinion of himself, the book is asking society at large to view all people with a chromosomal abnormality as Superheroes whether they want to be seen that way or not.
      Thanks for the food for thought, I always love rethinking my opinions. I enjoy your blog too, it’s great.

      • Thank you for responding to my comment. If I did not live in a shrine dedicated to super heroes I may not use the term either:) Hard to say.

        I, too, am here to figure this out. I will continue to read your blog and follow your family’s adventures in life.

        Your kid is a beauty. Best, kwp

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  11. Pingback: Down syndrome is/is not a superpower — Down Syndrome Prenatal Testing

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