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.

 

 

Just About Coping

There’s a meme that pops up on social media every so often, entitled ‘just about coping’. It’s a lovely space where (most often) parents of children with Down’s syndrome get to advertise the joy that an extra chromosome 21 brings to their lives, how their families aren’t so different from typical ones in the face of overwhelming pity and the tacit societal understanding that life with a disability/disabled child must be rubbish. If you want a smile, search for the hashtag. I promise you will be uplifted.

This post, however, has nothing to do with that. This post is actually about the reality that is just about coping. With work, with life, with money, without money, with parenting, with disability parenting, with getting older and your kids growing up and everyone having different expectations of you and you finding that, instead of somehow being apart from the patriarchy because you disapproved of it, you are just as trapped within it as everyone else.  Life in 2020 doesn’t look like it’s going to get any easier any time soon (sorry), so if, like me, you have a demanding work life and an equally (if not more so) demanding home life and you haven’t got any time for wellbeing because you are, in fact, just about coping, this post is for you.

I haven’t written a wellbeing post since this one; and this one isn’t so much about physical (wash your hands when you get home, EVERY TIME) as mental health. Not that I am an expert, but if you feel like this and you are weighed down with a heavy mental load in both your personal and your working life, then these are the things that (sort of) work for me.

1. Ditch everything you can. I have successfully ditched the making of the packed lunches and the doing of the weekly menu and internet food shop. It does mean that I have to eat stale bread sandwiches with fillings that don’t go to the edge, but as far as I am concerned, this is a small price to pay. The way to achieve this is to just not do it. That way, someone (else) has to step into the breach or there isn’t any food. It has NOT been a successful strategy as far as the disability paperwork and meetings are concerned, nor does it work with personal care or ironing, but I refer you back to the first sentence of this point. Ditch the things you can.
2. Related to the above is to identify the things that drag you down and stop doing them (if you can). I hate cleaning with a passion. I hate it and it drags me down. I resent spending my spare time doing something that I dislike so much. I’ll do it if I have to, but it’s not something that brings me joy. I’ve got a really good cleaner now, to whom I am pathetically grateful, and it helps. My house is, as she tells me, getting better, and that makes my life more pleasant in general. If you’re in a job where people treat you badly, keep your eyes out for a different job. It can take a while.
3. You don’t have to agree to everything. There are things you can say ‘no’ to. You can say no to things in your personal life and at work. It’s OK. You don’t even have to have a reason. You don’t have to be extraordinary to live a good life, to be loved and to love in return. You can just be you.

You may have noticed that there is a theme to my reflections; that of taking away rather than adding, of simplifying rather than increasing the complexity of an already complicated life. There are things you can’t avoid (here’s looking at you, bills) and things that you can’t avoid that lay you low (here’s looking at you social care and I can see you trying to get out of the way, Mr Mortgage); there are always unpleasant things in life that you can’t get away from that have to be got on with. Sometimes taking your brain out and giving it a rest is an excellent option. Sometimes carving some time and space out for yourself is an impossible task.  Sometimes all you can do is grit your teeth. Cope, just about.