sabato 15 marzo 2014

Let's knock that wall down #WDSD2014 #losguardodeglialtri

This morning, as soon as I woke up, I watched the video on the Coordown site, for the #dearFutureMom2014 campaign and, even though I was very touched by it, I am happy.
It’s a lovely day today, because it seemed as if that video was talking to me, telling me phrases that I didn’t know I needed, yet I am here with tears on my face and I feel better.
People with Down syndrome can be happy, Dear Mum, don’t be afraid.

You can watch that video here or try from this link link qui (activate the Italian sub-titles).  I want to make my contribution too, in my own way, with a story with a lot of words, a lot of emotion, with a bit of my life (and you can do the same if you want to).  Let’s start.

When my family and I go out for a walk in the city, in the midst of a crowd, of strangers, outside the protected shell of our town, then things become clearer.
The others look at us.
They look at us, but in fact it is Killó who attracts their attention.
Do we need to be specific? I suppose so, perhaps people don’t think, they don’t know ...

If you walk along the streets, or in the supermarket, or at the sea or in the mountains, together with a blond child wearing blue glasses whose name is Killó, people look at you.  It is clear that he has Down syndrome and a lot of people only notice that (unfortunately).
There are stares, the most annoying, from those people who, turn blank as if they are seeing a heavenly vision, and make you feel sorry you haven’t got any autographed photos to hand out.
There are quick, hidden glances, which come and go, and end up with strange uneasy expressions, showing embarrassment, which seem to say: “Sorry I’m looking at you but I don’t really want to, I can’t stop staring”.
There are questioning looks (“But has he got Down syndrome???”), those gazes removed too quickly, those that become so cold.
There are glimpses out of the corner of the eye from those who you can see will turn round as soon as you have gone by, who are so curious and here it becomes fun to play a trick: I turn round too and catch you looking at me.  Then I smile, calmly, I come in peace).

Having said all this, I must also say that Killó greets randomly, ciao here, hallo there, with a clear preference for those people who pass him by immerged in their own thoughts.  He says hallo, they are taken back, they say hallo even before noticing the Syndrome, then they see it and there are various reactions.  The one I prefer is the rather surprised and often tender smile.
A lot of people smile at him, even if he doesn’t say hallo to them, he is often given sweets in the shops, a caress,  a couple of compliments. Total strangers have even stopped us, to meet him, to say some set phrases (you are special, he is special, children like that arrive only in marvellous families etc.) which don’t have much effect on us (because it’s not true that we are special) but they surprise us and sometimes move us due to the good intentions behind them.
So we don’t pass unobserved.

I have to say that we are all attractive and I have strange curly hair and Matteo is tall and the Blonde is blonde and blue, so it’s not easy to understand if it is just Down syndrome that makes us interesting or our other clear aesthetic qualities :))

One of my friends, Martina (the first mum that you can see in the video, together with her Emma), pointed out to me that those gazes are mute.
I interpret, imagine, suppose, but I don’t really know what they mean, what thoughts are behind them.
I could know if I was told, but quite honestly I don’t think I would be too happy to know all those thoughts.  I certainly wouldn’t appreciate the “poor thing” nor any form of pity to its own end, in the same way that I don’t like the “Ah, Down syndrome children are always so good and happy”, because it isn’t true (all people are different, whether or not they have Down syndrome in common).

So, there is a wall, it is still there, which divides us with the Syndrome (the different ones) from the others (those who are the same) and it is nourished by silence, by unasked questions, wrong information, irritated answers from those who are observed and by the embarrassment of the observers.
Well, the wall is there, even if there are quite a few gaps in it, and we – four women, mothers of children and young people with Down syndrome - would like to tear it down.
Even just a few parts of it, as others have done before us and others will do after us.

I am asking for your help, from those of you who are different and those of you who are the same: would you like to tell me about those glances, yours, when you meet us?
Would you like to give your words to those glances, those smiles, would you like to tell me what you feel when faced with my diversity, Killó’s or any other person with Down syndrome?
I hope so, I will read, I will answer if necessary, and I will take a break from the silence which is often so distressing.
Write on your blogs and then link here to the comments, or write to me directly here, just a few lines are enough.

Together with Martina, Marina and Valle, we have decided to pay tribute to World Down Syndrome Day by telling you about our personal experiences as mothers, inviting you to move over to this side, even if only to tell us a story.  We will collect all the stories and comments that you share with us in our blogs or facebook pages with the links to all the posts, to create a bridge between US and YOU, hoping that together we can tear down that wall and one day be able to speak only about US.  
Every story must be tagged as follows: #WDSD2014 #DearFutureMom #losguardodeglialtri

Martina: giu-il-muro/ (italiano) lets-knock-that-wall-down (english version)
Marina Viola: un mondo migliore  (italiano) a better world (english version)
Valle: His life is definitely not a struggle

1 commento:

I commenti mi piacciono assai.
Se vuoi dirmi qualcosa, io ti ascolto.
Se però vuoi che il messaggio mi arrivi davvero, è meglio se lo scrivi qui sotto ;)

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