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