Silenced : on elections, parenting, teaching and Down’s syndrome

Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.
Image taken from Elephant and the Bad Baby by Elfrida Vipont, illustrated by Raymond Briggs.
It’s been a funny old six weeks or so.  Actually, scratch that.  It’s been a funny old few months.  Since the summer really, and the political landscape in Europe was thrown into turmoil by a vote by the British to leave the European Union.  Since that day, the world feels as if it has changed.  The Tory and the Labour Parties convulsed in a sort of headless chicken state of shock.  People on trains in central London talked to each other.  And now, like some sort of seismic through-the-looking-glass aftershock, we have a reality TV star poised to enter the White House as President of the United States of America, and a former Chancellor of the Exchequer storming to victory as the Nation’s Sweetheart by dancing on live TV.  It’s all gone a bit, well, weird.

It’s been a funny few weeks in the Down’s syndrome parenting community too.  At the beginning of October, a beautiful documentary, made by an intelligent mother, aired on BBC Two.  Before it was even broadcast it was up for criticism.  How dare this mother tell the world that she loves her son, regardless of chromosomes, or of the medical profession’s definition of normality.  How dare she make an argument based on emotion, based on love? How dare she make women feel guilty? (Because of course, when it is a woman’s right to choose, it is she and she only, who bears both the responsibility and the blame.)

All those things I am so tired of hearing: too emotional, too close to the subject, unrealistic, were laid at the feet of Sally Phillips.  How dare she step out of the box that society had provided for her and ask questions; especially those that made people feel uncomfortable?  She should be stopped.  The BBC should never have allowed it, proclaimed angry journalists in national newspapers and on the radio.

And here we are again.  A beautiful film, made to answer the question of an unsure mother, ‘Dear Future Mom’, to reassure her that, even with disability in her life, she could still be happy.  She could still love her child and her child could also, in their turn, be happy and love her in return, has been banned on French TV.  Two women felt guilty and complained.  And BOOM.  Gone.

It’s as if the public narrative, that life with disability, with Down’s syndrome, cannot be challenged.  That if you say, ‘hey, actually, it’s OK’ you are breaking some unwritten rule, and you will be told, ‘it’s alright for you, your son is high functioning’, or ‘your personal wealth makes it all seem better than it is’, or ‘you are ignoring all the people for whom it is not OK’.  It’s as if there are acceptable faces of disability, you know the ones I mean, the ones who overcome the obstacles to achieve great things, and those whose faces just don’t fit.

The thing that gets me, though, is that it doesn’t stop there.  There are any number of things that, today, we just don’t seem allowed to say.  In the same way that mothers like me, especially if they have a bigger platform than I do, aren’t allowed to advocate by asking questions that might make someone feel uncomfortable, as if the making of my child, and others like him, into monsters in order to allow us to carry on further down the road to genetic selection, without being branded a Pro-lifer, we aren’t allowed to suggest there might be problems with the EU, or the benefits system for fear of being branded a racist, or a fascist or any other sort of Bad-ist.

As teachers we have to be careful too.  I sat in a staff meeting about a year ago where we talked about social media and how we use it.  As well as the warnings against ‘friending’ past students (or any other young people) or parents, we were warned to stay off subjects where we might have opinions, like politics.  (Ooops, bit late for me, then!)  And then there are parents.

One of the most important sets of people we work with are parents.  Getting a good relationship going with them (us) is one of the most effective ways to improve educational outcomes for the children we teach.  When parents trust us (them), they (we) support the school in a hundred million little tiny ways that make all the difference.  When these parents have children with SEND (us, them), a positive relationship is transformative.

But the thing is, not everything in the garden is rosy.  Not everything is as simple as that.  Some adults are difficult to deal with, especially when you are only in your early twenties, not long out of childhood yourself.  I’ve not had a parent physically threaten me (yet), but I know teachers who have been.  In my career, I’ve been shouted at by parents who have had one too many pints down at the local.  I’ve been intimidated and complained about, the door to colleagues shut.  I’ve had people say things about me that aren’t true, and experienced and witnessed behaviour from adults – including the dreaded Pushy Parents – that essentially harms their children.

Now personally, I tend along the systems line.  I have met very few people who deliberately go out to hurt others, or to do a bad job.  On the contrary, I have met many, many, many of them who are trapped within systems that force them to behave in particular ways.  Teachers trapped by the conflicting demands of a conflicted education system, that on the one hand wants high academic standards and on the other fluffy bunnies.  TAs bound by their contracts to one child, their job depending on them being needed.  SENCOs caught on the ever turning wheel of administration, paperwork and meetings.  Parents stuck in in the black hole of poverty, or out on the playground, unwilling participants in the rising tide of anxiety brought on us by a knowledge economy ruled by the market place.

When you look at it like that, it isn’t fair to say you are either good at what you do, or you aren’t.  Taking responsibility for the job that you do, either as parent or teacher is one thing; dishing blame about to other people in a personal way, is another.  You know your own context – but you don’t know theirs.

Because when we stop saying it out loud, when we stop telling the wider world the realities of the job – when it is OK and when it isn’t – like Down’s syndrome, when there is only one story that is acceptable to tell for fear of provoking offence or guilt, what we do is raise the barricades.  We hunker down, and the battle commences; the victims of which, neither winner, nor loser, are not us, but them.

 

 

Now, if you don’t like swears, I don’t recommend you watch this video.  I recommend you read this blog post, which makes the same point, but without so many swears.

 

 

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10 thoughts on “Silenced : on elections, parenting, teaching and Down’s syndrome

  1. Reblogged this on includedbygrace and commented:
    I saw want to shout hurray to Nancy Gedge. Articulating these thoughts is a difficult and brave thing and I am so glad she has taken the time to do so. Yesterday, at the Churches For All, No Limits conference, some of these issues were discussed, mentioned and sometimes fearfully hinted at. Wherever we are, we should ask God to give us courage to stand up against those who want to silence truth and life. I’m scared…but with people like you and like Nancy around me, I feel a bit braver indeed.

      1. I dislike conflict on a personal level – but I really can’t see it doing any good in these contexts – plus daily reading was 1 Peter 2:15-16

  2. We should never allow ourselves to be silenced. That’d be a huge step backwards. Am totally with you on the ‘no-one is perfect’ thought – I do always try to remember that both sides have different issues to face but we should be aiming for the same end goal. Loved the video, so true. And I splurted my tea a bit at ‘fluffy bunnies’ 😉

  3. This is a great post, because it’s making me think hard about who I’ve turned into as the parent of disabled kids.

    I used to be someone who never said boo to a goose. But I’ve had to engage in conflict so many times since my kids came along, it’s now hardwired into my personality.

    That’s not a good thing, for me personally. I don’t much like who I’ve become sometimes. But for our family, it’s been a vital thing. Because conflict within the law is the only thing that secured my kids the support they need.

    I tried reason, persuasion, collaboration, appeals to empathy. I learned about the ramshackle SEND system. But nothing much changed, until I engaged in conflict with people who denied my kids their legal entitlement to appropriate education.

    I’m not sure I agree on the systems bit – people are pressured by organisational systems, sure, but individual beliefs matter hugely too, for good and ill.

    I knew what I had to do to get my kids’ needs met. And the prospect of what I had to do terrified me. But it was a maverick LA educational psychologist who bucked the system, & who discreetly gave me the courage & hope to try.

    I won’t be silenced now – for my kids, & others like them. But that change in me has been the most uncomfortable aspect of being a parent of a disabled child.

    1. Absolutely – as always, you have put your finger on it. I am deeply uncomfortable at the very idea of being in conflict – and with my own profession too! It has been the cause of some considerable angst for me, both now and in the past.

      For me, it comes down to understanding – it is terribly easy, when you are in an office, or even a classroom to see us, and our children, as a homogenous mass, ‘the enemy’, which then makes us easier to dismiss (which I do hate! heh heh). So, when I am asked to speak to people about my experience as a parent, I am keen to accept the offer, in part because it allows me to humanise us out of an ‘us and them’ situation.

      It’s very tiring. *sigh*

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