We don’t need to be afraid

You know that thing where you wish you had a skill that you patently do not possess? I don’t often wish this – not that I am super skilled at everything, you understand, more that I am happy being me – but once in a while, I really wish that I knew how to make a film. I quite like making little movies of family life (I have a gorgeous one of baby A laughing), but the snippets I have collected over the years are only really meaningful to me. They don’t form part of any particular narrative and none of them are stitched together. They are simple snatches of time when I had a camera to hand, unusual in itself, especially when they were little. In the time it would take to find the camera and get it going, the moment would, nine times out of ten, be gone.

What I’d really like to do, I think, is make a film about our lives that people understand. Not that there isn’t any number of those kinds of films going round; I quite often write about them, after all. There’s the 50 mums, the young man whose brother is a soldier, the girl next door. These films are powerful and they tell parts of a universal story of love and life which we all recognise and yet they are subtly disruptive, which is, I guess, why I like them.

When I started this blog, I had originally intended it to go along in a linear fashion. To tell our story from the moment of his birth to now as a sort of autobiography. That is, until I got distracted by education and my plans went out of the window. Or, maybe, if I’m more honest and less covering my real feelings with a joke, as soon as I realised that revisiting painful experiences, parts of my life when I was really worried or didn’t know what to do, when I was overwhelmed by fear, I guess, was too hard to do. The process of writing a memory involves an immersion in that experience and that wasn’t helpful to me. Keeping everything on an even keel is quite hard work, after all.

The thing that I have managed, I hope, to keep hold of in terms of my original intentions though, is that I wanted it to be truthful. The more I’ve written about disability, the more I’ve read around and thought and looked at representations, particularly of Down’s syndrome, the more I see it. Two stories. The ‘high functioning’ (awful term), cheerful, loving angel and the other one. The scary one. The one that nobody seems to want to accept. Non-verbal. Mysterious. A living echo of a bygone age of institutions, an age we are supposed to have left behind. And the more I’ve thought and written about our lives, the more and more clear it is to me (and I hope to you, dear reader) is that the last thing our lives are, that he is, is a one dimensional caricature, one thing or the other.

One of the things I never thought I’d get to say in a professional context, and which I used to regularly say in the early days was that there was no such thing as a crystal ball. I can’t see the future, and neither can anyone else. It’s a good riposte to those who would prick my bubble of self-defence, you know, the one I continuously blow so that fear of the future doesn’t dominate my life. If I could have seen, taken hold of a spyglass and peered into 2020 back when he was born in 2001, the life we have now when I was a young mother with a fragile baby in her arms, would, I am sure, have been frightening.

But that doesn’t mean our story shouldn’t be told. It doesn’t mean I, or anyone else, should sugar coat the truth, that there isn’t dignity and love in the messy realness of disability, no matter what form it takes.  Life isn’t easy. But we need to tell the truth and keep on telling it, so that what was mysterious becomes part of the day to day. We don’t need to be afraid.

Please take the time to watch this beautiful exploration of the complexities of family life through a discussion by Alex Widdowson with his parents of his brother, who has Down’s syndrome.



7 thoughts on “We don’t need to be afraid

  1. Hi Nancy
    Thanks again for another thought provoking and inspiring blog. I have a student in my EPQ class making a film about their sister with Down’s syndrome and I would love for them to reach out to you – is that ok? Thanks and best wishes as ever. Rory

      1. Hi Nancy,
        My name is Fatima and I’m a year 12 student. I am doing an EPQ (Extended Project Qualification) and for my project I have decided to make a film regarding my sister Mouzas lifestyle about coping with downsyndrome. if you have any points that are interesting regarding the topic it would be very useful
        Thank you

  2. You’re so right Nancy! Life is messy, complicated and often uncertain (mine certainly looks nothing like I imagined in the days of my youth!) But it doesn’t make it any the less important or valuable and I’m thankful every day for what I do have. Xxx

    1. Me too. Every day is a blessing – and today the sun is shining which is even better (considering all in my house have a horrible horrible cold…) xxxxxxx😘

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