Katherine Runswick-Cole

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’.

You can read about my visit to Queensland University of Technology’s Inclusive Education Forum here and watch the keynote video.

Read my latest blog about the project Living Life to the Fullest here:

 

 

View at Medium.com

Latest blog post here: https://medium.com/soeresearch/improving-the-lives-of-people-with-learning-disabilities-e40f84cc906c

 

Recent blog with Nick Hodge on paren/professional partnerships here:

 

https://medium.com/soeresearch/you-say-i-hear-tensions-in-professional-parent-partnerships-f7120bbeba99

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:

 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.

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’ …

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

 

 

 

 

 

 

 

 

On an autumnal Friday evening, I was half-listening to The Archers (please forgive me, die hard fans, but I often listen while clearing up after our meal!),  Roy and Lexi, who are in a new relationship, were chatting about food and work, the gentle everyday of Ambridge that I so love.  When Roy asked Lexi to pass him the laptop so that he could look up something for work, I had no idea what was coming next and then he said it – Grey Gables are holding a para-sport event!

In this moment, something rather remarkable had happened.  You see, Ambridge is almost always a disability free zone.  The residents of Ambridge may be accident prone (poor Nigel and the roof; Tony and the bull; Tom and the tractor; Christopher and the horse) but, if you live in rural Borcetshire, accidents always result either in full recovery or death, rather than disability.  In Ambridge, disability always and only emerges as a temporary phenomenon to do three things:

1. to move the plot along – think of Dan’s juvenile arthritis as smoothing the path for Shula to an affair with Richard Locke, her son’s GP;
2. to develop a character – think of the disablement of Rob Titchener as part of his becoming a monster in the Helen/Rob abuse storyline;
3. to share information about particular conditions – think of the information about living with a child with Down Syndrome given by the consultant to Mike and Vicky or Jack’s experiences of living with dementia.

In The Archers, sadly, disability is not part of the everyday, so much so that even when Mike and Vicky Tucker had their daughter Bethany, child with Down Syndrome, the family was quickly exiled to Birmingham.  And so the ordinary lives of disabled people are missing in the village.

That is, until yesterday, when it was revealed that Grey Gables would host a para-sport event.  I’m not sure how the plot will unfold, but, so far, the mention of the conference seems to be a departure from the usual ways that disability is spoken of in The Archers. The arrival of the para-athletes could be part of the ordinary, everyday life of a hotel and conference centre – another set of delegates, much like any other, holding an event.

But, despite my delight that disability seems to be appearing in The Archers in a mundane way, part of the tapestry of rural life, rather than a temporary plot device or character twist, this tale of disability already reflects many of the problematic current cultural assumptions that haunt the lives of disabled people.

First, it is worth noting that the disabled delegates are para-athletes.  After all, if we read the popular press we know that disabled people must be represented either para athletes or benefit scroungers!   Disabled people are not imagined as simply leading ordinary lives – and so these disabled delegates must, of course, be exceptional athletes.

Second, we now know that Grey Gables has ‘disabled-friendly rooms’.  What Roy imagines a ‘disabled-friendly’ room to be is unclear (though Lexi talks about ‘people in wheelchairs’) but it may come as a surprise to Roy to know that not all disabled people are wheelchair users and, what’s more, that what counts as accessible for one disabled conference delegate may be a barrier for another.  Roy’s worry about the number of accessible toilets is shared by anyone who has organised an inclusive conference.  Fortunately, Roy, help is on hand, check out this toolkit to help you to think more broadly about accessible toilets .

Third, Roy is concerned about how many ‘people with disabilities’ are going to rock up to the event. The organisers can’t tell him how many of ‘them’ will arrive.  This reminds us that, at best, the arrival of disabled people is unexpected at a country house hotel, like Grey Gables, and, at worst, unwelcome.

And finally, the source of advice and counsel is Lexi.  Lexi’s expert knowledge about disability access is drawn from the fact that she had a boss in Sofia who uses a wheelchair, and, so,  it is she who suggests booking all the downstairs bedrooms for the disabled guests during the day – after all that worked in Sofia.  Sadly, it doesn’t occur to Roy or Lexi to ask the real experts about access, the disabled delegates themselves, what would work for them at the conference.

But, finally, well done, The Archers, good to see disability as part of the everyday for once in Ambridge.  Now, if you could just see your way to bringing Bethany back ….

 

More about The Archers and disability here:

Liddiard, K. and Runswick-Cole, K. (2016) Archers story is disabled women’s dark reality https://disabilitynow.org.uk/2016/09/08/archers-story-is-disabled-womens-dark-reality/ 8^th September, 2016.

Runswick-Cole, K. (2016) Why The Archers needs more disabled characters, The Independent, 6th March 2016 Online at: http://www.independent.co.uk/arts-entertainment/tv/news/why-the-archers-needs-more-disabled-characters-a6915471.html

Runswick-Cole, K. (2017) The dis/appearance of disability in The Archers … or why Bethany had to go to Birmingham. In Courage, C., Headlam, N. and Matthews, P. (eds) (2017) The Archers in Fact and Fiction: reflections of rural life in Borcetshire, London: Peter Lang.

Runswick-Cole, K. and Wood, B. (2017) Bag of the Devil: the disablement of Rob Kitchener, Academic Archers Conference, February, 2017

Watch the video here

Runswick-Cole, K. & Wood, R. (in press) Bag of the Devil: the disablement of Rob Titchener. In Courage, C. & Headlam, N. (eds) Custard, culverts and cake: academics on life with The Archers. Emerald Publishing.

Blog for Times Educational Supplement Online: Should we celebrate when children with SEND win the race because their friends run one step behind?

Read my latest blog on what Brexit might mean for disabled people here:

https://mcrmetropolis.uk/blog/why-do-disabled-people-fear-brexit/