‘Challenging parents’

It’s hard to imagine an article in a specialist journal causing more hurt and rage.

Last week Gemma Corby, a columnist at The Times Education Supplement, wrote a piece advising SENDCOs (Special Educational Needs and Disability Coordinators) on how they should ‘handle difficult situations’ with ‘challenging parents’ of disabled children.  There are, she explains, three different kinds of parents - ‘angry’ ‘pandering’ and ‘non-engaging' - and she offers bland (if frequently patronising and defensive) advice on dealing with each group.   It’s hard to summarise the hundreds of outraged responses from real-life parents of disabled children that I’ve read on Twitter, Facebook and the TES website, but four underlying themes emerge.

The first is Corby’s apparent lack of understanding.  She acknowledges that our behaviour ‘may’ be the result of the challenges we face, but completely fails to recognise the scale and gravity of the task.  The briefest of lists should include: local authorities failing to produce legally binding EHCPs while deploying armies of lawyers to defeat our poorly funded challenges; schools who’re deeply reluctant to provide the support that our children obviously need, partly because of their own priorities but also because of shrinking education budgets; the continuous struggles to secure for our children the minimum levels of health and social care that they so obviously require; appallingly bureaucratic systems which require us to emphasise our child’s inabilities in order to get any help at all; and the rapid scaling down of the other services that were designed to help disabled children and their desperately stretched families.

Then, the article fails to acknowledge the personal stresses that we all, in different ways, deal with. Statistics show a much higher incidence of marital breakdown in such families as well as a negative impact on the ability to hold down jobs and pursue a career.  Such parents are more likely to experience ill health and anxiety, depression, and despair are the all too common shadows lurking behind the positivity and joy that we all try to live by.  The recent report into early mortality among people with learning disabilities is just one more area of concern and challenge.   In other words, Corby shows a shocking ignorance about the parents she claims to understand. 

The third aspect of the article that is so objectionable is the ‘us’ and ‘them’ nature of her argument, as if parents were the enemy, exacerbated by categorising us and calling us names. This would be insensitive at the best of times, but, as Learning Disability England has so cogently argued (here), the terrible deaths of disabled young people recently and the abuse heaped on their grieving parents by professionals makes it doubly disgraceful.   The awful lesson of these events, as shown so vividly by Sara Ryan’s remarkable Justice for Laughing Boy, is that when it comes to the most vulnerable people in society the institutions set up to help - the education system, the NHS, social care, the legal profession, even parliament - sometimes, appallingly, let them down.  Sara Ryan was called a ‘difficult woman’ and a ‘toxic mother’, because she fought so hard for the justice that the world had denied her beautiful son.   It’s time for the name calling to end.  

The fourth constant in so many of the replies from parents is the way that Corby’s antagonistic language is not just offensive, it’s unrepresentative of the real situation on the ground.  Many commented touchingly on the very positive, collaborative and creative natures of their experiences with SENDCOs, just as many SENDCOs and other people in education so evidently treat parents with imagination, empathy and collaboration.  We know that the TES is a paper for teachers, not parents, but what’s striking is how out of touch the writer seems to be with her readers.

One of the things that people without disabled children sometimes misunderstand is that we love our disabled children just as much as we love our non-disabled ones.    Most of us have been through every version of grief, denial, and worry, but have realised that our children are as worthy of life and happiness as any of us, and we resolutely refuse to be patronised, lectured or ignored by the forces seemingly set in judgment over our heads.  This article has touched the rawest of raw nerves.

The fact is, of course, that all parents of disabled children are different.  What unites us is the experience of having to fight and fight again for their basic human rights.   We’ve only become tigers because we have to, and would do anything to lay the burden down.  It would be marvellous if the TES found a way of acknowledging the disastrous impact of this deeply misguided article on a group of people who’ve got enough battles to fight already.