On #WorldMentalHealthDay

On #WorldMentalHealthDay take a moment to think about what it means to mother (or a person who takes on the mothering role) of a child or adult with a learning disabilities.

We live in a context where we know that our children are likely to die 20-30 years before their peers.  25 is middle age.

Mothers of disabled children are routinely characterised as in denial or over anxious.  We are constructed as difficult, or, even, toxic.

We are held responsible for our own mental health – told not to be afraid to talk about just how difficult it is to parent a disabled child.

But it is not our children who cause us distress.  We love them.  It is the systems we are forced to engage with, and the discrimination that we and our children face, that drive us ‘mad’.

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How on earth did this get published? ‘Problematic parents’ and ‘children with SEND’

I’ve been watching the Twitter storm unfold following the publication by the Times Educational Supplement on-line of an unhelpful typology of parents of children with special educational needs, written by a SENDCO.

Here, I want to step back from commenting on the article itself, or about the individual who wrote it, to respond to a question posed by Jon Rouse on Twitter:

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 How on earth did this get published?

This is an important question. How did the article get through editing by the leading national newspaper for education professionals, The Times Educational Supplement?

Who commissioned the article or was it an unsolicited contribution?

Why did no one think – “hey, teachers are parents too, I wonder how they might feel reading this article?”

Or, hold the front page, “teachers are also parents of children labelled with SEND too – how might they feel about being categorised in this way?”

And what about the families working with the SENDCO in the school she writes from?  Crucially, how might they feel about being categorised in this way?

No one even stopped to think: “ok, we will go with this but let’s offer a right to reply published at the same time on the same platform.”

Instead, Twitter has done its thing and replied but without the invitation or the support of the editors from TES.

It was published because …

I think that there is a multiplicity of complex reasons based on relationships or power, professional protectionism and (highly gendered) perceptions of parenting that meant that the article was published without any evidence of a second thought about the implications of doing so.

Despite the ‘biggest shake up in SEND for thirty years’, at the heart of the system is the persistent belief that children labeled with SEND are different from and less than their peers.  Remember Part 3 (20) of the Children and Families Act, 2014 still describes children with SEND in terms of their individual deficits.

This is the context which makes it possible to publish an article that characterizes children and their parents as ‘problems to be managed’ without a second thought.

We need to move away from a model of SEND based on deficit and needs towards an approach which celebrates children’s children’s rights and entitlements and fosters an environment where children, families and teachers work in meaningful partnerships with each other.

Post Script

Helpful comments on the article and associated issues here: @thewoodbug,@ldeengland* and  @lawraine57.

* I very much hope that the SENDCO will take up the offer to meet with parents from Learning Disability England and have a chance to understand better the lives of the families she works with.

An open letter to Jeremy Hunt …

Dear Jeremy Hunt

Over the last week, I have been following you closely on Twitter hoping for a response to #LeDeR.  And then it came … closely followed by you ‘exiting the chamber’ …

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I’ve been frantically Tweeting at you all week.  Random Tweets of rage, sorrow, fear and dread.  I keep wondering do you read your timeline?  Do you read the Tweets of parents of children with learning disabilities who are busily calculating how long they must live to be able to bury their children?  Do you know how it feels to look at your 22 year old son and realise that he is rapidly approaching middle age?

I need to tell you that we, as a family, have bought into the ‘responsibilisation’ and ‘individualisation’ of health that you and your colleagues continue to promote.  We  count our steps, calories, and number of portions of fruit and veg a day.  We watch our weight and our alcohol intake as we meet our activity goals climbing hills for the sake of our mental and physical health.  And we have taught our children to do the same.

And yet, our son still has a life expectancy of 29 years less than his peers.  The myth of individual responsibility for health is exposed as the cause of his life-limiting condition is revealed as the structural health inequalities that you, your government and previous governments have done nothing to change.  And the deaths of people with learning disabilities are categorised simply  categorised by you as ‘far poorer’ outcomes.

And so today, we walked, in the sunshine … but under the ever present cloud of #LeDeR.

How does that make you feel, Mr Hunt?

Katherine Runswick-Cole

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