In February 2023, we hosted the second of four roundtable events with our partners the Confederation of School Trusts, exploring how to improve SEND provision in England’s schools.
The session focused on three key tensions within the SEND system that must be understood, acknowledged and resolved if we are to improve provision for the children who find learning hardest. These are: the tension between the expertise required for SEND work and its perceived prestige; the tension inherent in definitions of children as ‘more able’ or ‘less able’ to learn; and the tension between pupil need and pupil diagnosis.
We welcomed theatre director, author and learning disability activist Stephen Unwin, to share his story and his son Joey’s, and explore the tension between need and diagnosis. This is a transcript of Stephen’s keynote.
I should start by declaring that I am no educationalist.
I am, however, the father of a young man (now 26) with profound learning disabilities, no speech and intractable epilepsy. This has affected me deeply, and I’ve written a history of how people like my Joey have been regarded in culture and society over the centuries.
"It’s a story of contradiction and confusion, made worse by both prejudice and best intention."
I want to share some of my research and explore how the education of learning-disabled people has changed. It’s a story of contradiction and confusion, made worse by both prejudice and best intention. Furthermore, it exists within a conceptual framework which can be counterproductive.
We might start with the Wild Boy of Aveyron. This was a young lad discovered at the end of the eighteenth century in the forests of Southern France. He was brought to Paris where the great asylum director Phillipe Pinel pronounced that he was an ‘idiot’ for whom nothing could be done. But the young doctor Jean-Marc Itard was determined to prove him wrong and set out to educate young Victor (as he called him). Itard was astonishingly industrious and inventive (if sometimes resorting to frankly unsavoury methods) but, after six long years, abandoned the project, in despair that he’d not been able to make Victor into a French gentleman. The fact that Itard’s housekeeper, Madame Guérin, did more for Victor than either Pinel’s pessimism or Itard’s idealism should have told us something, above all that pragmatism and care are more useful than simplistic notions of who is educable and who isn’t.
Itard’s assistant Edouard Séguin became one of the pioneers of special education. First in France and then America he created systems of training the senses which, it was thought, would bring out the innate abilities of even the most profoundly affected ‘idiots’. Like Itard, he saw himself involved in a journey of exploration into the dark continent of cognitive impairment and his approach was distinctly dirigiste. But for all his contradictions he is one of the heroes of special education, certainly better than what followed.
In 1869 the statistician Francos Galton coined the term ‘eugenics’. Using entirely unscientific accounts of the heritability of intelligence, his followers created a category of humans they labelled ‘feeble-minded’ or ‘mental defectives’ (with charming subcategories such as ‘idiot’, ‘imbecile’ and ‘moron’) who, they increasingly claimed, presented a fundamental threat to the ‘race’.
"Education matters, it seems, but not for the people who might find it hardest."
This led to simplistic polarities: a person was either ‘normal’ or ‘worthless’, a net contributor to the nation’s wellbeing or a ‘burden’ on family and the state. And with that, the Enlightenment’s commitment to the education of so-called ‘idiots’ quickly faded and whole groups were dismissed as not worth the investment.
Eugenic attitudes were widespread but the uncomfortable truth is that people like many of us were responsible for promoting it: academics, teachers, scientists, and doctors with progressive intellectuals like Virginia Woolf, Bernard Shaw, Bertrand Russell and DH Lawrence all lending their names.
Education matters, it seems, but not for the people who might find it hardest.
Nazi Germany took this to its logical conclusion with their programme of mass murder of the disabled, but even after the defeat of fascism the core thinking behind eugenics was still in practice. People were still dismissed as educationally subnormal and little was done to counter the idea that money spent on such people was wasted.
Opposition to eugenics came from intriguing places: some Catholics who saw such thinking as contrary to God’s will, a few socialists who (rightly) understood eugenics as an attack on working people and, increasingly, the families of the persecuted. Their objections were frequently mocked, above all for being irrational, but they were right and their voices need to be heeded.
Things have improved, but the struggle continues.
My friend the American philosopher Licia Carlson describes intellectual disabilities as ‘the philosopher’s nightmare’, and those of us who care for and educate learning-disabled people need to grapple with some significant difficulties and contradictions, some of which are a consequence of our own best intentions.
Thus, there was an outcry in the 1960s when it was discovered that non-disabled young black people in Britain were being sent to run down schools for the so-called ‘educationally subnormal’ on account of racist notions of intelligence. Typically, what was overlooked (and was still overlooked in the recent documentary Subnormal) was the much greater injustice of why such dismal schools existed in the first place.
"The problem is that all too often we’re asking for them to be more ‘like us’, hardly the best way to champion diversity and difference."
Then, it is often said that we want learning disabled people to have ‘normal lives’. But we should ask ourselves what we mean by ‘normal’ and whether such ‘normality’ is what the learning-disabled person wants. The problem is that all too often we’re asking for them to be more ‘like us’, hardly the best way to champion diversity and difference.
And when we declare our commitment to listening to the voices of learning-disabled people, we need to remember that some learning-disabled people can’t speak, or won’t speak, and that self-advocacy runs the danger of creating further hierarchies in a group that has suffered so much from hierarchy.
Similar problems beset the politics of learning disabilities. Thus, every few years, parliamentarians pass legislation which, it’s thought, will benefit groups which have hitherto been excluded, and so we got the Autism Act of 2009 or, last year, the Down Syndrome Act. The fact that Autism and Down’s are the two best known causes of learning disabilities obscures the fact that most learning-disabled people have no diagnosis at all. Thus, what is needed is legislation protecting the rights and dignities of all learning-disabled people not these diagnosis-led, ineffective, highly divisive and frankly self-promoting attempts to do good.
Further contradictions can be found in the desire to promote role models. Indeed, MENCAP is running a campaign on the ‘myth busters’, learning-disabled people who’ve achieved remarkable things. The problem, however, is that this overlooks the people who aren’t on television, starting up record companies, making films or writing poetry, and once again reinforces the hierarchy between capable and incapable that has been so dangerous.
Finally, it’s sometimes been argued that parents are an obstacle to good specialist education: we’re told that we’re in denial, that we don’t understand our children’s needs, we just fight and don’t get the realities, and so on. But what parents too often see is schools which are not engaging with disabled children in a needs-based way, which are stumped when the child fails to achieve what is expected and which see parents as an obstacle to be overcome, not as partners in a project. There has to be a better way.
"Learning disabilities offer us an opportunity to re-examine our values."
In the light of these contradictions, I suggest that learning disabilities offer us an opportunity to re-examine our values. Above all, they challenge the way that we accord such high status to the life of the mind and to productivity. Thus, we immediately ask each other how their work is going, what they’re reading, what they’re achieving, and don’t listen to how we actually are. This is understandable – it’s the bread and butter of the meritocracy that we all tend to champion as better than class or economic hierarchies – but we do need to recognise that in doing this we are, by implication, questioning the value of those who can’t achieve such things.
It should make us pause.
So, what lessons does this offer us, especially in the education of learning-disabled young people today?
The first is the danger of what in medicine is called ‘diagnostic overshadowing’, whereby doctors are so mesmerised by the underlying diagnosis that they miss the individual ailments which may be affecting the person. Thus, just as a doctor sometimes fails to notice that the learning-disabled person is overweight or has in-growing toenails, so the educationalist too readily fails to recognise the relatively straightforward areas of individual challenge because they can’t see past the overarching disability.
The second is imagining that everybody who belongs to a particular diagnostic category has the same degree of learning disability. Thus, the range of intellectual disability among people with Down syndrome is large; with autism it is vast, with nothing linking people at the opposite ends of the so-called spectrum apart from an overarching title. And then, of course, most learning-disabled people have no diagnosis, and we should ask how they fare in a system which is so committed to providing support according to diagnosis, not need.
The third is that we must explore what we mean by inclusion and what we think a special school should provide. And here the questions are especially hard. There are people who argue that there shouldn’t be special schools at all, and that a proper inclusive system would be equipped to educate everyone, regardless of learning disability. At the other extreme are those who worry about the provision of specialist education in mainstream settings and argue that the only place such children can thrive is in special schools, further dividing young people into the disabled and the non-disabled. And this is further complicated by the number of non-learning-disabled children being diagnosed as neurodiverse.
"The principle of need, not diagnosis."
And so, the very process of diagnosis and categorisation causes its own problems. Of course, I understand the value of medical diagnosis where intervention is helpful – as, for example, with Joey’s epilepsy – and I also realise that some categorisation can help with the provision of tailored support and advocacy. But I do feel we need to restructure how we help learning disabled young people and operate on the principle of ‘need, not diagnosis’. ‘What does this young person need’, should be our question, not ‘what category do they fit into’? After all, ‘when you’ve met one learning-disabled person, well, you’ve met one learning-disabled person.’ Label jars, not people.
It's possible that the true meaning of a person-centred approach has not yet been discovered.
I have no answers to these philosophical problems. But I do think with affection of Stanley Segal, who in 1967 wrote the hugely influential polemic No Child is Ineducable. The challenge for us today is to live the meaning of Segal’s words.
I also think of my own son Joey. He started out in a mainstream primary school with a committed learning support assistant. When that couldn’t give him what he needed, he was moved to a special school in Walthamstow. But when his epilepsy became dangerous, he was transferred to a residential special school in Hertfordshire which could support his health needs. He then went on to special college, also in Hertfordshire, finally leaving full time education at the age of 23.
But in my mind, his education continues.
"No child is ineducable, it just depends on what we think education is."
Joey’s educational journey hasn’t been perfect and we have had to fight for every change, every year in fact. But it has, for the most part, adapted to his specific needs and not been driven by a simplistic diagnosis. That’s maybe because he doesn’t fit into any specific diagnostic profile. And maybe that’s a blessing. But we maybe need to approach every young person in the same way: as an individual, not as a category.
By any standard, Joey’s cognitive abilities are very limited. He’ll never front a TV show, get given awards, surprise people by his amazing skills. He loves Monsters Inc and Frozen. He swims in a rubber ring and needs the bars up when he goes bowling. He can’t do his shoelaces up, brush his teeth or clean himself. He can just about find his way around an iPad but only because his big brother taught him and he can (sort of) dress himself, though his trousers are often the wrong way round and he struggles with socks.
But Joey isn’t ineducable, no child is ineducable, it just depends on what we think education is.
Maybe there’s more to life than passing exams, getting qualifications and being productive. Maybe we should be helping people be happy.
My only conclusion is that learning-disabled people make us question our most cherished assumptions and can teach us more than we can ever hope to teach them.
Go further. In collaboration with the Confederation of School Trusts (CST), Ambition expert Tom Rees and Vice Principal Ben Newark have published A GOOD LIFE: Towards greater dignity for people with learning disability. This paper responds to the government's consultation on SEND reform and is free to read here.