Made Possible

Made Possible

On the eve of my son’s 23rdbirthday, I posted a picture of him standing with the Sydney Harbour Bridge behind him.  Nothing unusual about that, you may say, young people travel these days, made possible[1]by cheap flights and hostels.

What makes this picture remarkable is that my son, according to those who judge these things, has a learning disability. Many of his peers are locked up in an institution, his life expectancy is 20-30 less than non-disabled people of the same age[2], because of discrimination and inequality. He is, at 23 already, potentially, middle-aged.

So as I lay in bed this morning, I began to wonder how was this picture made possible?  What do people with learning disabilities need to live the lives they want to lead?

Family: we love him; we ‘get him’ (not ‘totally’ Caroline Dineage[3], how could we ever ‘get’ anyone else’s experience ‘totally’?).

Friends (and colleagues): we have friends who support us, challenge us and together we made possible this world for our son, outside of the woefully low aspirations for people with learning disabilities that haunt their lives.

NHS: thanks to the NHS who removed a chunk of our son’s brain, he no longer has tens of seizures, nor sleeps half the day.  Without the NHS that trip (that flight!) would not have been made possible.

Social Care: this is a tricky one.  Three intrusive assessments before any support was given; 9 month wait once direct payments were approved; being made to feel like the problem in social care assessments for pointing out the problem with social care assessments[4] (I still have no clarity about how parental ‘warmth’ is assessed); support being slowly and slyly eroded against a discourse of cuts that construct reasonable requests as unreasonable.  But a week he enjoys, being outside in the sun, the wind and the rain is, for now, made possible by social care.

Education: another tricky one.  A mixed bag of: acceptance and rejection; tolerance and correction; kindness and cruelty. A turbulent (litigious) pathway through mainstream education culminating in woeful ‘specialist’ FE provision and finally exclusion which led to a happier life outside of formal education where learning through doing the things you love has finally been made possible.

What keeps me awake at night, and writing blogs in the morning, is that what is made possible is also so easily made impossible.  This life of possibility is fragile, as we know from the lives of so many other young people, the slightest change threatens to bring the house down.  As we, his parents, age and if the care to which our son is entitled is slowly undermined, what is currently made possible will be made impossible.  We live in a society, a culture and by successive governments who, at best, lack aspirations for, and at worst, dehumanize, people with learning disabilities [5].

But as I look at that picture, a wide grin and a wide brim mean that hope, too,  is made possible.

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[1]The repetition of made possible is inspired by Saba Salman’s book “Made Possible

[2]Learning from Deaths Mortality Review

[3]On 19thDecember, 2018 on BBC Breakfast, Caroline Dineage repeated that she ‘totally got it’ when talking about the lives of people with learning disabilities.

[4]With thanks to Sara Ahmed for this point.

[5} See http://rightfullives.net for details.

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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’.

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.