Sometimes Wade is given gifts. Mostly it is for a reason like birthdays and Christmas but occasionally we will receive a ‘Just Because’ gift. ‘Just Because’ gifts are generally lovely because I know that the person giving it to us saw something and thought of Wade. It’s nice to be in people’s thoughts. But every now and then I am spurred to wonder exactly why Wade was in a person’s thoughts when the gift was purchased.
Sometimes I wonder whether I am receiving the gift ‘Just Because’…or just because Wade has a disability. Mostly, I don’t even think about it because people are ‘well-meaning’ and if people are just trying to be nice then it doesn’t matter…right?
Well, recently I had cause to answer that question and have come up with a big, fat, resounding, yes!…it does matter.
Recently I was given a book for Wade. I am not sharing this story to embarrass or humiliate the person who gave me this book–I haven’t met this person and it’s possible they weren’t aware of its contents. I am sharing because it horrifies me that children could read about this view of intellectual disability and learn from it. That Wade (or I for that matter) needs to justify his difference for him to be valued.
Now, one point I will make, is that this book is originally published in Brazil and presumably translated from Portuguese so it may lack some of the original subtlety and nuance….but I doubt it.
Even if that is true–somewhere between writer, illustrator, editor, proof reader, translator, publisher, printer, distributor, book seller, online advertiser and purchaser…
…no one thought this was a terrible idea? That’s a problem.
Here’s the book. Complete with this ‘fun’ rubber chicken, that makes a hideous honking noise when squeezed, and this look on its face…(yes, the asymmetrical eyes are deliberate as you will discover after reading the text.)
Let’s have a read and I will join you for a delicate and tactful discussion at the end…
***Sadly a double page is missing here because the copy of the book I have has a misprint. Pages 1 & 2 are repeated here so some of the story is missing…***
WHAT THE ACTUAL F…???
I mean…hmmm interesting perspective?
I don’t know about you but here’s what I just read…
Page 1. The animals were all different but got along. Presumably only minor physical differences are tolerated as depicted by the horse in glasses and the dog with different coloured eyes. They lived in harmony…until…
Page 2. Five eggs were laid but only one had a chick. It wasn’t perfect but given she had no other chicks to choose from, she had to make do with the little weak one.
Page 3&4. Here little chicken, meet your community….everyone here is quaintly unique but that chicken is soooo unusual, we will all comment behind the mother’s back and make assumptions—but we will be kind enough to make sure she can’t hear us.
Page 5. At least she was cute when she was little but now that she is older….
Page 6. Something sounds frightening or frightened but since I can’t understand it, I will pretend it’s not there.
Page 7&8. Hmmmmm….now that something is affecting me and I am inconvenienced, maybe I might take another look at this chicken and see if there is some potential value here…to me. Nope. False alarm. If I can’t understand it then it must be crazy.
Page 9. What? That chicken might not have a quaint difference? It might be overt?? Well now I am just plain frightened. I liked it better when I could ignore it and pretend it wasn’t there.
Page 10. Hang on a minute. These losses to me are really starting to stack up. I wonder if this chicken can help me, let’s look and listen a bit more closely?
Page 11 & 12 now sadly, I am missing two crucial pages of the book due to a misprint where pages 1&2 were reprinted so the narrative arc is somewhat broken here. I can only presume some humiliating and potentially life threatening experiment is concocted here to find out for sure if the chicken had any value to them at all…cynical I know.
Page 13&14 so from that day forth, all the animals knew that the chicken was useful to them and only now deserving of basic human rights. All the poor chicken had to do for the privilege was save the lives of every last one of them…although we haven’t bothered to give her a name yet.
I must admit that I had a good laugh reading this book because it seemed so ridiculous until I realised that, in its clumsily translated way, it has articulated how a lot of people view intellectual disability. That it is a one way street where the onus is on the person with the disability to straighten up and fly right. And if they can’t do that then they had better be in possession of some magic power or life saving property if they want to be included and valued. That if they cannot be understood then they have nothing to say.
Things are definitely changing and the world is not like it used to be. Difference is much more understood than it used to be and people who move differently in the world are given more and more freedom to do that, but there is still a long way to go.
Books like this do not help.
I want the world to be more of a two way street. Not only for people with a disability but everyone. I guess you could loosely call it ‘respect and understanding for fellow man’ but that seems a bit too obscure to neatly summarise. So I look at it like this.
Wade and I will work hard to communicate and function in this world as well as he is able. He has shown that he is verbal and he should be able to communicate in a way that most people understand, even if the end result is gloriously off-beat and out there…as early reports tend to indicate!
For some people though, words will elude them. Their form of communication will be different. It may be assisted speech technology or sign language or visuals. It may even be grunts or noises as depicted in this story. If that is the best that person can do then that is good enough. That is one way of the two way street complete.
The second way of the two way street is for the rest of society to step forward and presume competence. To presume people have a voice and something to say. To wait a little longer for an answer or try a different way of asking the question. To put aside their fears and preconceived ideas about what they think they know of a particular stereotype and just listen or watch.
I expect Wade to work hard and fulfil his obligations as a decent, contributing, respectful member of society as best he can but I also expect that from everyone else too… I don’t expect him to have to prove his worth first through some superpower, though.
I don’t want ‘the way in which he differs’ to define him, I want him to be defined by who he is, what he loves to do, what he has to say and topics that interest him; his favourite colours, tv characters, sports, hobbies, friends, movies; who he is as a friend, a colleague, a partner etc.
And if someone is spurred to give him something ‘just because’, I want it to be just because he is interesting, or funny, or friendly, or 4…not just because he has a disability.
If in doubt though…you can be reasonably confident I will never have the use for an ‘inspirational’ book on “how I would better appreciate my ‘broken’ son if only I could find a use for him”.