Tag Archives: Health

Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?

 

The Body Politic

If it weren’t for the pressure I feel under to be thin, I could almost believe that my body was my own.  I sit, every morning, eyeing my breakfast and telling myself I ought to eat less, be less; every morsel that passes my lips laced with an added helping of guilt.

I never used to worry about being thin.  I never even used to think about it.  All those women, publicly plastered over the pages of magazines, paraded on the telly and in films, naked in newspapers; they had nothing to do with me.  I was young, and strong(ish).  My body was a sign of my power.  It was mine, and I wasn’t reducing it for anyone.

I remember the moment when I understood that it didn’t really belong to me at all.  I was sitting in a blandly lightish-beige office, chatting to a doctor, an obstetrician.  She was older than me, but not by much, and she was dandling Sam upon her knee.  I’d been asked to go in to talk about…something, I’m not quite sure what.  I thought it was probably to do with the mechanics of giving birth, but it wasn’t.  It was about Sam.  There she sat, cuddling my baby, who sat, in turn, clutching at his toes in the way that babies do, and she looked at me straight and this is what she said.

“If I found out that I was carrying a baby with Down’s, I’d have a termination.”

And like that, I knew.

I should have known it before, really.  I should have twigged the moment someone took a machine and looked inside me (and told me to go away and get rid of HALF of the pint of water I had dutifully consumed – HALF!) to see what was going on with my baby.  I should have realised when I stuck the picture, grainy and black and white, to the classroom door.

It didn’t occur to me the first time that someone patted my pregnant bump (I didn’t have to explain back then that it was a food baby), or held shop doors open as I waddled along, or gave up their seat for me on the bus.  It should have struck me more forcibly when I sat with friends and we regaled each other with tales from the delivery room; we cried with laughter over the pop-eyed question as to whether anyone else would care to take a look, or even better, have a root around in there, but it didn’t.  Maybe it was the slight hysteria brought on by a lack of sleep.

Whatever it was, I didn’t realise that my body was no longer a private thing, and that what I did with it was a matter for public debate until that moment.  If I was a responsible person, I would get myself checked, I would allow not only scans, but needles, to enter; a physical consequence of a not-so-hidden judgement.

But this thing, this thing about Down’s syndrome I take particularly hard, because it’s not about clothes or hair or breast or bottle or even whether you are having a baby at all.  It isn’t about buggy choice and what-that-says-about-you, or where you let your baby sleep or who sets the routine – or not.  It’s not even something that affects only older mothers, the geriatric ones, because, you know, risk.

It’s about the way that women’s bodies are continuously policed, and that what is dressed up as choice is really about control.

 

There’s a TV programme coming up next week, and I have written this post as a way of working out my thoughts before it airs.  I appreciate it is a difficult subject – and one that affects us all.

http://www.bbc.co.uk/programmes/b07ycbj5

Olympians

I’m not what you might call a Sports’ Fan.  In fact, I think I would go so far as to say that I come from a family who are singularly left cold by sports.  Nobody follows a football team, nobody watches it on the telly – except, that is, for the Olympics.  Last time we got carried away with the rush of enthusiasm that swept the nation and applied for tickets (which we didn’t get), and rushed off to see the Paralympics (tickets for which we did get) on a sunny day in September.  My mum and my uncle, her brother, even went so far as to keep charts, and ring each other up to compare.

One of the things I like about the Olympics is the variety.  I have to admit that I don’t go a bundle on the horse dancing thing or watching archery and I can’t see myself ever becoming a fan of boxing, but I find myself transfixed by the gymnastics (will they, won’t they fall off that beam?) and the cycling, if somewhat confusing in its scoring has been, for a UK audience anyway, an exciting spectacle.

Another of the things I like, as a teacher especially, is the sports-people themselves.  I like the way that they are so gracious (well, most of them, anyway) in both victory and defeat.  If they have a bad event, they pick themselves up and they carry on.  Sometimes, they even win when everyone thought their chance was lost.  I feel a bit sorry for them though, when they are interviewed, straight off the track or out of the pool, sweat dripping, still breathing heavily from their exertions, expected to come up with something coherent for the cameras – especially if they just missed out coming out on top.

I remember watching Victoria Pendleton interviewed, post-race, eyes bloodshot and the skin of her cheeks blood pricked, and I remembered the time that I looked like that.  After giving birth, I made my way to the loo and caught a glimpse of my veined reflection in the mirror over the sink (nothing like that old advert for tea where the slightly flushed young woman took a grateful sip of her steaming brew while everyone offered her their smiling congratulations), and I thought that I had never made quite so much physical effort either before or since.

But, apart from the evidence of hard labour, the thing that strikes me, almost every time I watch and listen to these athletes at the peak of fitness, an example, if you like, of the tippety top a human being can actually be, is how, when they clutch their medals, they give the credit away.  They don’t stand there and agree that yes, they are the best of the best and thank you very much; instead, they are at pains to point out that they couldn’t do what they do without teams of people, friends, family, people paid to look after them, at their side, supporting them to live their chosen lives.

I thought about these Olympians, these examples of human greatness, the other day, when I watched a programme on TV and I listened to a debate on the introduction of a new blood test that will help doctors to identify possible pregnancies where the baby is carrying a little extra in the form of chromosomes.  I thought about them, and I wondered how terrible it was that somebody should have to be helped, or that someone might need some support in order to achieve their dreams.

I wondered if there wasn’t anyone who didn’t worry for their child after they had gone, and how using this worry, the fear of how other people will behave towards them, fear of living a life supported, as a justification for not bringing that baby into the world at all was perhaps the saddest thing of all.

 

 

You can watch the debate here, from about 18 minutes in.  I’d be interested to hear your thoughts.

http://www.bbc.co.uk/programmes/b07r24yr

 

Craving

Sometimes I crave chocolate.  I long for the sweet melting, the instant hit.  I don’t drink coffee.  I don’t drink tea.  I never craved for coal, or cabbages.  But sometimes: chocolate.

More often, I crave sleep. Long, unbroken stretches of peaceful  slumber, the sort that carry on into the later hours of the morning.  The sort where I can lie, comfortable, without having to go to the loo, or put anyone back to bed, check anyone’s temperature, mop up sick or change wet beds, the way I used to when I was young.

When I was young there was no need for craving. The life free from responsibility, from care, where sleep comes when you wish, when sugary snacks are yours, no consequences asked. No eyebrows twitched with anxiety because everything was open to opportunity and everyone was invincible.

Now that I am older I distrust those who forge into the future with certainty, throwing caution to the wind.  I crave a time when the well of anxiety runs dry, when the weight you carry for one child means that the concern you have for another doesn’t drown you, helpless, in its depths. I quietly long for the days I remember, when vulnerability was a faraway concept.

Counting the Cost

One of the first things I ever wrote for publication was a piece on miscarriage.  It was a long time ago, L was still a tiny baby, and in order to write it, I talked to a number of women, all of whom had had one, me included.  It’s strange, but it is one of those things that it shrouded in mystery, a silent mourning, until the moment you step over the threshold of birth.

Maybe it has something to do with work.  At work, no one has the time (nor the inclination) to go into the details of your reproductive woes.  It isn’t the place (you are supposed to be working, after all), and, well, it just isn’t obvious.  Everyone can tell when you are having a baby (at least when you pass the Too Many Cakes Stage), once that bump is on show, your status is one of public scrutiny and comment, but before, that is the time of shadows, of half-admitted hopes and dreams.

There is so much about the female condition that is both shrouded in mystery and guarded by thresholds.  It makes me wonder whether there is ever such a thing as an essential self, the bit that never changes, when you are female.  I look back at the child, the teenager, the young woman, mother, and I wonder if I actually, when it comes down to it, have anything much in common with them.  The years, and the crossing of thresholds, have changed me in a way that the male condition does not.

In a way, thanks to Sam’s very public disability, I had a passport into the shared pain of loss at an early stage.  Nobody looked at me, when we ventured out into the public/private world of the coffee morning and the toddler group, the informal and cathartic glue that holds us together in the early years of motherhood, and thought, ‘well, what would she know?’  That’s the problem with miscarriage, you see, or difficulties in conceiving; their invisibility.  If you didn’t know, you’d never know.

But the stories of loss that I have been privy to, of repeated mourning, of joy snatched for only a short time, together with my own, and others’ experience of difference, of disability, and my doctor’s muttered comfort that it was a wonder that the human race managed to reproduce at all, given the statistics, have conspired to teach me a salutary lesson about life, and humanity.

We think we have control.  We think we have choices.  We think we are beyond our animal bones.  And I suppose, to a certain extent, we are.  We may be able to select our embryos, choose the pettiest, or the most intelligent, test the genes (and not just for Trisomy 21), screen for all manner of things we just don’t fancy, be it a lack of happiness or health.  We might like to persuade ourselves that our ideas are just that; ideas devoid of morals, or ethics.  But those choices, those hard, physical choices touted as ease, they come at a cost; the price of which is loss and it is paid in tears.