Learning Disabilities

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Hello. A new book has forcefully reminded me of the manner in which, together with my fifth-formed schoolmates, we demonstrated our superiority by cruelly categorising our fellow students.

We mocked those who couldn't play games. Yeah, boo, he missed that open goal. Those who dressed badly. Did you see the state of his gym kit? But we reserved our most... damning invective for a boy, I'll call him Wilcox, who he routinely and incessantly mocked for his stupidity, for not remembering the date of the great reform bill.

for mixing up Louis XIV and XVI. We had a range of derogatory terms to categorise Wilcox's lack of intelligence. He was a know-nothing, a deadhead, a thicky, a nutter. There was one other derogatory term that we might well have employed to Labour Wilcox, which is now considered offensive, the title of a new book. Those they called idiots, the idea of the disabled mind... from 1700 to the present day. A book which reflects on the way that people with learning disabilities...

have been described and treated. Well, its author who now joins me on the line from Frankfurt is Simon Jarris, honorary research fellow at the Open University. Simon, I need to ask you first of all why you chose the title for your book. I knew it could be quite shocking for people, but the way in which language changes often and sometimes quite rapidly over time is actually a very important part of this history.

Idiots was the original word which was used to describe what we'd call somebody with a learning or intellectual disability today. And you only have to go through the litany of language since then. Imbecile. Mental defective, moron, cretin, subnormal, and then mentally handicapped. And even today, we're not entirely agreed on what it should be, whether it should be intellectual disability, cognitive disability, or learning disability.

And what that shows is that words which often, although not always, start out as quite innocent, neutral descriptors of a person with a certain kind of impaired mind, rapidly turns into abuse. And that can be a real indicator, I think. of how this group of people have always operated as an outgroup, however much the terminology has.

For many years you worked with people with learning disabilities. Tell me a little bit about that experience and how it contributed to the questions you explore in your own research. I began working with children with learning disabilities but I then went and worked.

as a nursing assistant in the 1980s at what was called a mental handicap hospital at the time. And it was a strange place full of what you'd have called mentally handicapped men then, many of whom had lived there for their entire lives. children which for some of them was from the 1920s and what I realised it was this very strange parallel world with its own rules and regulations and completely separate from the world that everybody else lived in and the world had

changed very rapidly. Outside, they'd lived through the Great Depression, the Second World War, the birth of the NHS, the welfare state, the swinging 60s, Thatcherism. All that had happened outside and nothing had changed for them. They'd just had this same routine, up at seven in the morning, to bed at seven at night, three stodgy meals every day, bit of time in the occupation centre.

And it made me question, how would this come about? Why were this group of people put into this strange world that never changed, in which they were never allowed to do what everyone else did? And later I actually worked in the big... resettlement programmes which happened in the 1980s and 90s where care in the community began and these hospitals were closed down and people moved back into the community. And I became very interested in their history and how this had happened.

You go back over the last 300 years, beginning with the 18th century, when you point out such people were really not in special institutions, but largely integrated into communities. There isn't a lot of history about this group, but what had been written, concentrated... tended to concentrate on the institutional era from the 1830s through to the 1980s and then the care in the community period.

And there was an assumption that before then, people had been very ostracised and marginalised in their communities, cruelly treated. And I wanted to interrogate that assumption. So I looked, for example, at records from Old Bailey criminal trials, which are an incredible insight into how people were perceived in those days. And I found about 50 trials.

where people, this language was used, Matt, he's half an idiot, he's almost an idiot, he's this, he's that, he can't tell a hapenny from a farthing. But what was fascinating about it was that... when people appeared in the Obelion trial for these criminal offences, people from the community, their family, their workplaces queued up to testify on their behalf. There was a young woman who'd stolen some ribbons. Because of the value of the ribbons, she actually faced the death penalty.

And she was a servant and her mistress came in and said, yes, she's a weak, easy girl. I know that, you know, she doesn't understand anything. But I promise you that if you release her and don't hang her, I'll take her back into my service and she'll never be trouble again.

There was a young man called Thomas Baggett who was involved in the Gordon riots in 1780. He was on trial for his life as well. And his workmates, the manager of his workplace, he was a skin gatherer in the markets, members of his family. all came in and testified in court on his behalf to save him. And in fact, they were lying through their teeth because they were all saying he was with them on that day and he couldn't possibly have been.

But it just started to give me a sense of how actually people were understood to be a bit different, sometimes seen a bit humorously, but very much part of their families. neighbourhoods, communities and so on. Yes, you use that nice word, belonging, don't you? You don't really have to pass a mental test to gain a certificate of human belonging.

That's exactly it. And so I think there was an attitude around at that time that if you were born into a community, you belonged to it. And it was part of the job of that community to adapt itself to the people. Whereas I think in modern medical... thinking there's an idea that if people can't pass certain tests, they can't really belong.

And you write about the way in which these so-called idiots were treated in humour, slang, caricature. I read my way through about 158th century joke books. They were very, very popular at the time. And there were lots of jokes. about people of low intelligence, people who were idiots and so on. And there were also slang dictionaries from the time and there was a lot of language to describe this group of so-called...

Idiot. So words that we know today, like nincompoop was an 18th century word. But what was interesting about it was it was actually generally quite... Everybody had terrible things said about them in the 18th century. It was that sort of period. But it wasn't particularly abusive or dismissive. What then happens in the 19th century is that...

Idiots start to disappear from joke books. Humour changes and gets a bit darker. And of course that's associated with people leaving society and going off into asylums because you don't joke about people unless they're there. And this was an indication of how they were starting to be totally...

excluded from society. The period after this, the shift 1812 to 1870 I think of the years you mentioned, a shift towards the social exclusion of people with learning disabilities. And you say this is strongly associated with Enlightenment thought, with the increasing emphasis upon reason and science. The Enlightenment struggled with people who were not seen as rational, who couldn't exercise reason.

After the American and French revolutions, there was a belief that we would build more rationalist, utopian societies in which every citizen could contribute and from which every citizen would benefit. The problem with this utopianism was that there was no place in it for people who were seen as impaired or not able to exercise the faculty of reason.

So if you read the accounts by the early 19th century radicals such as Godwin about how... society would look there would be no disease there would be no disability so people in a way were attacked by an ideological pincer movement from both sides so you're radical Left-wing utopians didn't want disabled people in a utopian society. There was no place for them. The right-wing reactionaries who were afraid that the French Revolution would repeat itself over here.

didn't want anybody that didn't or couldn't conform. So whichever way you looked at it, it was increasingly seen that there was no place for the idiot in mainstream society. And also the newly empowered medical profession. The medical profession had been... profoundly disinterested in the idiot population up until the late 18th century.

basically because they were all private physicians who operated on a results basis. And this was something you couldn't make better. This was a lifelong impairment that people were born with. This changed particularly in France after the revolution when this new scientific authority was given to the medical profession.

developed a state medical profession whose job was to incarcerate those who didn't fit into the new society. This had a big influence in Great Britain as well. So the medical profession were given... authority and control and the right to treat. this population. So they developed a sort of body of knowledge about what constituted idiocy, what constituted imbecility. And of course, there was a professional career path for them then as the asylums developed and they were put in charge of those.

So the next move, really, is the move towards the institutionalisation, isn't it, of the intellectually disabled? Tell me something about the lives of those who found themselves in workhouses, asylums, and later, I think, in colonies. Beginning of the 19th century, there were about four or five thousand people living in a few voluntary asylums. By the end of the 19th century, there were 100,000 people incarcerated.

lunatics, people we described as having mental health, idiots, prisoners and so on. And it had all begun with changes in poor relief when there was an idea that people shouldn't be able to... get state money if they didn't contribute and they didn't work. And so that was how the workhouse system developed. And so-called idiots.

kept finding themselves drawn into workhouses. There were around 10,000 of them by the middle of the 19th century living in workhouses. And these were particularly cruel environments, which were designed to make people want to get out of them. But of course, for the idiot population...

That didn't happen, so they became stuck in these places. They were then moved into lunatic asylums, people we'd call people with mental ill health today. But also that didn't work because the idea of the lunatic asylum was that people would be treated... recover and come out. And again, for this unchanging population, that didn't work. And so idiot asylums began from the late 1850s. They weren't all abusive in their day to day practice.

But it was just the very fact that people were put into them as young people and then expected to stay there for the rest of their lives. So highly regimented.

There were even sort of marching bands and marching drills took place inside these. So it was the idea that everybody could be trained and somehow tamed a bit, I suppose. And that... persisted and after the Mental Deficiency Act of 1913 created what was called the colony system basically long-stay institutions which were known as colonies and the idea was that from birth the mentally deficient

child as they were called then, would go in and they would stay there till they died. So there was this total separation. I've got a reading here. These are the words of Julian Huxley, the zoologist, biologist, humanist, eugenicist. which is very blunt in his assessment and the pejorative language he uses. What are we going to do? Every defect of man, woman and child is a burden.

Every defective is an extra body for the nation to feed and clothe, but produces little to nothing in return. Every defective needs care, and immobilizes a certain quantum of energy and goodwill which could otherwise be put to good use.

ideas about idiocy got entangled with ideas about race, intelligence, and the growing eugenicist movement. Tell me a little bit more about these theories and their relationship to, I suppose, what one called one of the darkest periods. of the 20th century. The eugenics period began around the 1870s with Galton, who was a second cousin of Darwin, who basically developed this theory that everything was hereditary.

and that there was a problem in that the feckless lower orders were breeding too much, and what they were breeding were criminals and idiots and... disabled people and prostitutes and alcoholics and so on. So there was this view that the race was being poisoned and this is what led on to Huxley's thinking. But actually it had all started a lot.

Earlier than that, you can trace the origins of eugenics throughout the 18th and 19th centuries. European explorers, when they went to distant lands and encountered different races who they'd never encountered before.

couldn't understand the languages they were speaking, so they decided that they didn't really have a proper language, that they just grunted and made sounds, and they didn't seem rational and so on. And they began to intertwine the idea of these foreign races with ideas of idiocy and imbecility. and it was very specific. So we hear words like savages and barbarians used. They weren't interchangeable. Savages meant the lowest form of other races.

from other parts of the world. And that was equated with idiocy. Barbarian meant people like the Mongolians who were like youths and who couldn't control their emotions. And they were like... imbeciles who had some abilities but not enough to be a full adult, if you like. And so certain racists were seen as idiots and...

The European coloniser would have total control over them. Others would be seen as imbecile, who would be given some leeway in their own life, but still be controlled by the European powers. So this... brought together the idea that non-white races, people of colour around the world were less intelligent.

than civilised Europeans. And this fed into eugenic discourse about race and the mind. You see this change in art and caricature and the novel and so on. The idiot starts to become a dangerous fit.

or a very sad and pitiful figure who just simply shouldn't be allowed to live. This of course feeds the sort of panic that was being spread by... eugenic ideas and this was very much embraced across the political spectrum by progressives as well as as reactionaries so it was more like a common assumption really that there were people in society who just didn't belong and of course the culmination of all this was in

Nazi Germany, where eugenics collided with Nazi ideology. And the first people to be killed as part of Nazi genocide were disabled people. 70,000 people were deliberately gassed to death as part of the T4 programme.

Eugenics did wane after the Second World War. and the NHS was born, and there was a sort of slow return, wasn't there, to community-based care. Yeah, the eugenicists had to beat a retreat after the Second World War, of course, as these Nazi atrocities were uncovered. Mental handicap hospitals, as they were now called, were all taken under the NHS. But it didn't bring around a lot of improvements in people's lives because it was really they became a backwater in the NHS.

quite neglected and you started to get a lot of abuse cases uncovered by journalists usually. And so there was growing public unease and under Margaret Thatcher. A Care in the Community Green paper proposed the total closure of all NHS.

hospitals, the transfer of people back into community homes. I think for Thatcher, she thought it was too expensive and a waste of money to have people in these hospitals, but it also fitted in with her anti-state views in which she thought that these people being... and the care of the state had not benefited them in any way at all. Your book doesn't really...

chart what could be described as a linear story of progress, does it? I mean, you want to suggest, in fact, that the 18th century still holds lessons for us today and there's really little cause for complacency. Why do you say that? The transfer to care in the community was a tremendous success. Tens of thousands of people moved out of what were...

just in essence, very abusive institutions. And most people with learning disabilities now lead their lives in the community and have much better lives than they had in the past. There are, however, still problems. There is...

the threat of a return to institutions. We've had a number of scandals in what are known as assessment and treatment centres where people deemed to have what's known as challenging behaviour have gone in and it started with the Winterbourne View scandal which was on Panorama.

and showed terrible abuse of people taking place. And there's been a litany of such failures since then. And I think part of our problem is people can be in the community, but not of it. You know, they might be living in a small flat in an ordinary neighbourhood. But do they really belong to that community? And that's where I think we can learn something from the 18th century, because 18th century communities didn't say...

Unless you can do this, this, this or this, we're not going to include you in our community. I'm not idealising it. The 18th century was a very difficult time for everyone to live. But you do get real... glimpses of what proper community participation and community integration is all about. And that's not just people receiving services, it's about people having networks and really belonging to the communities they live in. Thank you for the moment.

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I'm now anxious to learn from my next guest about a term which is often used in relation to some people with learning disabilities. Those were said to display behaviour which... quote, challenges others, unquote. Well, that phrase is the subject of a new research paper entitled Sticky Categories and Their Negative Consequences, People with Learning Disabilities and Behaviours Which...

challenge others. It's co-authored by Magdalena Mikulak, who's a research fellow in the Division of Health Research at Lancaster University. She's now with me in the studio. Magdalena! Over 1 million adults with learning disabilities apparently live now in the United Kingdom, representing over 2% of the total adult population. Behaviours that challenge others, or challenging behaviour, however you speak about it, are attributed to 20% of these adults. Is it a diagnosis?

No, absolutely not. It's not a diagnosis. It's more of a catch-all phrase for things that people might do that others find. either difficult to understand experiences threatening or that make them uncomfortable sometimes simply physical and verbal aggression but also things like non-compliance around personal care self-harm or self-injury or even things like withdrawing from social

interactions. So the term itself originated in the US and when it was first introduced the initial idea was very much that the challenge was to carers and services to basically work out a better way, more creative way of understanding the reasons and origins of

person's behaviors and find ways to support them and basically improve their lives and Simon has spoken about that already as often as the case with even the most well-intentioned phrases and categories they can take on a life of their own and the term challenging behavior has become distorted from that original meaning I just discussed and it is now indeed misused as a diagnostic label. But why is it that you want to challenge the label?

We know that language does not simply describe social reality, but actively shapes it. And with our research, which focused on improving lives of older people with learning disabilities, we really came to question the term. And I just don't think that the term has much explanatory power.

And in fact, it can function to conceal issues of poor care and even abuse. And sometimes behavior that would be a cause for real concern can be dismissed as something that person does because of their learning disability. So there is that element of what we call diagnostic overshadowing.

There's also instances when things that people do that signal that they're in pain are basically written off as challenging behavior. And then the question for us was whether we should accept categorizing a behavior that is a response to pain. trauma or neglect as challenging and the ethical consequences of doing so.

people who are categorized as having challenging behaviors are at a higher risk of experiencing restraint and other restrictive interventions. And similarly, having challenging behavior is a key predictor of longer stays in inpatient hospitals and institutions. despite the evidence that we also now have that people characterise as having behaviours that challenge others can be effectively supported within their local communities.

So in effect, what happens is that people continue to be moved away into specialist out-of-area inpatient settings, away from their communities and loved ones. Not really that different to the institutions that dominated the 20th century that Simon also referred to.

I can remember is from 2024 where there were over 2,000 people with learning disabilities or artistic people who were effectively locked up in hospitals. Many of them would be characterized as having behaviors that challenge others. You conducted interviews with social care.

staff in the uk within four models of care independent supported living residential nursing home shared lives and living with family and attending a day opportunity center as well you did all those things and you look at how the category of behaviour that challenge others is produced, applied and contested in these settings.

How did the staff understand this category of challenging behaviour? For some staff, it was very much a real thing. It would include things like a person shouting or being verbally or physically aggressive towards staff or other people, or indeed, again, self-harming.

So in that sense, these staff members accepted this category as both valid and important, and they kind of used it to make sense of the interactions with people learning disabilities who they were supported. Now, others were much more critical, or in fact, outright... dismisses of the term.

And they were much more attentive to the people's experiences and challenges in their lives. And I have a quote here from a manager at an independent supported living who said, and I quote, it's really unfair to stick labels on our clients. And I struggle when we use those terms. especially when someone is in a lot of pain to say that behavior is challenging in some way. Any one of us is capable of challenging behavior.

Any one of us, anybody, if you're pushed and pushed and pushed and pushed enough, you will have some challenging behavior, no doubt. And so we're all the same. It's not them and us. We're talking really about... breaches of social norms, aren't we? But you found some of these can be pretty subjective. I think that's the very nature of that category, behaviours that challenge others, that they are relational and it is the staff who keep records of their behaviour and they are in charge.

of, you know, case notes and care plans for that person. And in that sense, the story is quite one-sided. There's also obviously subjectively a different level of tolerance people might have towards certain behaviours, depending on how well they know the person. They support depending on how much background they have for that individual as well. I've got a reading here. These are the words of one manager.

I've always thought that people who maybe were deemed to be very challenging as younger people, as they get older, they then become less frustrated, angry, and they're definitely not the same person. But then again, I'm not the person I was 20 to 30 years ago. So I think if you're growing older and you're still tagged with a label about something you did a long time ago, I really find that inexcusable, but it's too easily done with clients. Once you are labelled in that way...

you're stuck with the label for the rest of your life, practically. I think, sadly, that can be the case. I think especially for people who were institutionalized or had this experience of being put away from their families, away from their communities, and they were labeled as having challenging behaviors, and that kind of determined the level of support they had, but also the kind of containment and control over their lives.

lives. That label, that category became for many people part of the unauthorised biography. Did you find any evidence that some staff resisted using the label or reframe it in some way? Yes, absolutely. potentially the most meaningful and helpful was when staff both challenged the category and instead talked about the importance of knowing the person and again understanding their history, their negative experiences of care in the past and also how to support that person on an individual

and human level and kind of valuing them for who they are. There we must stop. Magdalena Mikulak and Simon Jarrett. Thank you both. Now, one of the greatest pleasures in social science is coming across research that illuminates the lives of people who've been largely overlooked by other commentators. So last week's account...

of Irish migration on this programme, including Louise Ryan's research on Irish nurses in the NHS, was one such revelation. Anna-Marie Callan found it so interesting that the mass exodus of young women from Ireland was given at last just 15 minutes of fame. Other correspondents marvelled at the feat of adaptation these new nurses had to make. Here's Diane Pike. Laurie, knowing my mother's background in rural Ireland, living in a farmhouse with no running water, bathroom or even access...

to a country road. Her experience in becoming an NHS nurse must have been astonishing. Thanks also to Kathleen Kelly, very proud daughter of Irish emigrants, mother a nurse and father a building labourer, who reminded me of the huge contribution the Irish made to the building of transport links and houses.

in and around London. Meanwhile, Trevor Lewis detected at a mission lorry thousands of Irish people came not just for economic reasons, women particularly came to escape the Catholic Church and its draconian rules. Finally, Paul Connellan offered this wry observation. This is probably the only immigrant group in history where life expectancy went down after emigration.

All these good people wrote to me at thinkingaloud at bbc.co.uk. Next week I'll be delving into the lives and times of our oldest companions. At the BBC, we go further so you see clearer. With a subscription to BBC.com, you get unlimited articles and videos. Ad-free podcasts. The BBC News Channel streaming live 24-7 plus hundreds of acclaimed documentaries. From less than a dollar a week for your first year, read, watch and listen to trusted independent journalism and storytelling.

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