I was recently blocked on Twitter by someone with whom I’ve had, I thought, nothing but positive interactions. My crime? Well, it was that I agreed with the intention of some Local Authorities to stop using a dyslexia diagnosis or ‘label’ as a criterion for allocating reading support resources, and instead deploy resources in a more equitable and effective way to support any and all children with literacy difficulties.
For that I was called a “Dyslexia Denier”. At which point, I would like you to stop and think for a moment about what phrase that reminds you of.
I found it a pity for two reasons as I posted on Twitter:
The conversation that got me blocked (and piled upon by many people who assumed I must be very ignorant and ill-informed) was part of prequel discussions prior to the much anticipated “Dyslexia Debate” hosted by University College London, Institute of Education, featuring Jules Daulby, Julian Elliott, Jonathan Solity, Jo Ward and Sarah Crawford. The debate was in large part prompted by the rather shocking intervention in the House of Lords on October 30th 2018 (here), by several peers, not least Lord Addington, the current President of the British Dyslexia Association, which included a quite gross misrepresentation of the great work done by Warwickshire and Staffordshire Educational Psychology Services to try improve the equity, effectiveness and reach of their services to the children in their educational care.
The British Dyslexia Association was invited to put their side but declined, and so, to her credit, Jules Daulby, a well-liked and respected SEN consultant and ex Director of Education of the Driver Youth Trust, took the stand to provide some challenge to the proposals under discussion.
After an excellent introduction by Vivian Hill of UCL, Jules Daulby began to speak, and while disquieted by some of the online pre-discussions, I’d been looking forward to hearing her perspective. I was sadly disheartened however, by the turn the ‘debate’ quickly took, when, harking back to my concerns above about not being allowed to even ask questions, we were told that to question the use of the term dyslexia was tantamount to ‘judging dyslexia’, not least ‘judging the people’ to which the label applies. The language used was pejorative and deliberately, unapologetically emotive:
“What is missing is the emotional, instinctive side of the debate…we do need to be thinking about the people.”
To some amusement, Ms Daulby cast Julian Elliott as Dr Spock, and herself as the heroic Captain Kirk. You know, Spock, the cold, distant, rational thinker who was not only un-emotional, but was also not sufficiently understanding of emotions, and their importance to ‘humans’, to always be able to make the right decisions. Superficially funny perhaps, and Julian Elliott took it in great spirit, but to me it was, at its core, an unfair and professionally demeaning characterisation.
However, as much as Star Trek allusions might be laughed off, the talk came back to the hints of dark, malevolent undercurrents that many recent Twitter threads have encouraged parents of SEN/dyslexic children to fear. That same fear that caused my hitherto Twitter ‘friend’ to block me in order to protect her “mental health”. The same baseless, and to my mind, fear-mongering accusations promulgated in the House of Lords, but worse. In fact, had someone walked in on the debate without knowing what it was about, they might have been forgiven for thinking it concerned the rise of fascism. The provocative language used deliberately echoed Martin Niemöller’s famously haunting poem “First they came …”
The audience was shown a slide featuring three adorable children labelled, DLD? ASD? ADHD? Which of these lovely children were ‘we’ coming for next was the question posed:
“My question really to you; If we take away dyslexia, and we use ‘literacy difficulties’, who’s next? And I purposely use who, rather than what because, again, it is the people we are talking about here, it is the people that understand their difficulties, that can have it explained away.”
The final remarks, which again echoed the comments in the House of Lords, and thus presumably the position of the BDA, were that:
“It is not a perfect system but by denying the label and instead choosing ‘literacy difficulties’ means nothing and ignores those who are different. Rather than empowering them, we are telling them they don’t exist.”
Deep sigh.
I would actually have sympathy for the “we need to hear about the emotion/people argument”, if it were worryingly absent from the considerations of the education professionals involved. But the actual truth is that the ‘emotional’ side of the debate did feature, in very large part, in all of Elliott, Solity, Ward & Crawford’s talks. It was clear that all understood what was at stake emotionally for children and parents, but also that they had all had been pained by years of seeing children miss out on needed support due to an increasingly dysfunctional, nonsensical system being navigated, and sometimes manipulated, by a mere few to the detriment of the many. In fact, the opening words of Ward and Crawford, the shell-shocked (by the House of Lords attacks and aftermath) Warwickshire and Staffordshire educational psychology professionals who have dedicated their careers to supporting the most vulnerable children within our schools, spoke of the emotional needs of the children being at the forefront of everything they did.
Unfortunately, things didn’t improve after the debate. I naively thought that people would have listened to what was actually being proposed, but the arguments, particularly Julian Elliott’s, continued to be completely misrepresented, and one such reply to me was:
There it is again. Accusations of being a ‘denier’. And just in case you are confused, at no point, during this or any other discussion have I said, or even hinted, that I think dyslexia doesn’t exist.
I’ll be honest and say that all of this language, the implied or even outright unfounded accusations, and worse, the misappropriation of Holocaust narrative, has genuinely upset me. Over-sensitive perhaps, but here’s my question. Is this really acceptable professional discourse? Is this really how we respectfully and most importantly, effectively discuss important issues such as how to ensure the best educational AND emotional outcomes for our children? Furthermore, is it really acceptable for our representatives in the Lords to manipulate, or to be manipulated, to mischaracterise hard-working education professionals from on high? Lord Addington was right to remind his colleagues in the House of Lords of his presidency of the British Dyslexia Association, but perhaps they should also have been reminded that large bodies such as the BDA can’t help but act in order to try and protect themselves but that also, unfortunately, an organisation’s interests don’t always align perfectly with those of the people they purport to serve. It was disappointing, but perhaps not surprising, that the BDA chose not to appear in a forum where their assertions might meet real scrutiny and the chance of rebuttal.
If any ‘dyslexia industry’ advocates have read this far they’ll probably have dismissed it all because, by virtue of the fact that I’m asking questions, I must just be equally Spock-like and ignorant of real people and emotions. Now, please know that I resent the fact that I feel that I have to say the following in order to somehow prove my ‘emotional’ or ‘lived experience’ credentials. Though it really isn’t any of your business, the fact is that I have a ‘dyslexic’ child (and 2 others with SpLDs) and many dyslexic relatives. I have personally experienced all the resultant pain, worry, crying, pressure, sleepless-nights, self-doubt, despair, anxiety, trauma etc. that you might care to mention, and we are far from out of the woods yet. Also, still none of your business, I personally struggled immensely in school, loathing almost every single second of it from Kindergarten through to 6th Form, and if pressed, might even self-describe as ‘neuro-diverse’. I have also spent over 20 years working with and supporting ‘dyslexic’ children and adults and have not infrequently found myself despairing on their behalves and at other times assisting or even accompanying parents in their attempts to obtain needed support from school. I get it.
What I don’t get, however, is at what point, I and others (with decades of professional experience supporting children, families and schools) might reach the threshold of being allowed to ask questions, or have conversations that challenge the status quo with the ambition of improving services for all children, without being attacked, misrepresented and accused of wishing to cause harm to children?
As the above quote shows (from Dorothy Bishop’s blog), none of this is new to education or dyslexia, but this toxic style of debate really has to stop, and we have to stop accepting it, even if some of the people doing it are jolly nice.
You can see the “Dyslexia Debate” here and Jules Daulby’s perspective here.