Question the system
The rules for belonging have become very complex, very sophisticated, and very demanding. Failing to belong is the beginning of the outsider’s status
Simon Jarrett, Honorary Research Fellow, Birkbeck, University of London and author of Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day
For a brief spring after my graduation, I took up a temporary job as an accountant. The dullness of the job was compensated with some non-monetary perks. Like working in an Art Decò building in the city center and getting to know from the inside the life of the endangered office workers portrayed by Italian comedians. I shared my days with ladies with permed hair, the handbag dangling from their forearm, the time card in their hand ready to clock out on the minute. The most notable employee though was the delivery guy. A nevril skinny man with an exceptionally good temper, a passion for James Bond, and the heavy legacy of his name: Felice Pecora, Happy Sheep. On Thursdays, my day finished earlier and I drove my black bike down to Via Manzoni, less busy than usual in the early hours of the afternoon. Bumping along the pavé stones, I passed under one of the city doors that, with its layers of black and white marbles, marked the end of the city in the medieval era. Outside the door, the canal used to flow downhill and now a sleek layer of asphalt added a breeze to my journey to the Senate Palace. Dignified in the design with its concave facade and humble in the maintenance, the palace had the same flair of a vintage dress. Walking under its arch invariably gave me a thrill: I traced the steps of Napoleon, who transformed this college into his administrative center, the hustle and bustle of uniformed men, carriages and horses, whose wheels and hooves resonated in the square courtyard some two hundred years before. The palace was invariably deserted. It was just me and my excitement for what was awaiting me upstairs. Behind a cheap light wood counter, an archivist took care of my request in whispers not to disturb the people bent over the volumes. Curiosity had taken me to find out more about my house, which sat right on top of the Roman Forum. Someone told me I could consult the city land records and so I did.
The archivist brought a massive leather volume to my desk and my heart skipped a beat. Inside the brown skin, still soft and hydrated, the yellowed hand-stitched pages contained vivid fragments of life. Opening the handwritten book was more than visiting an archeological site, looking at a painting, listening to a lecture. It was diving, physically, into the lives of those who put those words down, dipping the pen into the ink. There were delicate miniatures, dots of ink, stains of wax. I could picture the writer compiling its records in the gloomy light of an autumn sunset. I imagined the life around my block, when the area was known as the “District of the wonders,” a step away from the cloistered convent of nuns nearby. It was just for a split second, but it felt as if the lives of those who crossed the same roads I crossed, were just behind a thin veil. It would have been enough for me to reach out and touch them.
In another palace, in another country, driven by another curiosity, Simon Jarrett, Honorary Research Fellow, Birkbeck, University of London, immersed himself into the lives of other people long gone, people who witnessed the advent of the medicalization of diversity. His research turned into Those They Called Idiots: The Idea of the Disabled Mind from 1700 to the Present Day, a book that explores the lives of those in institutions, people he defined as the “ultimate out-group of all the out-groups.” Simon’s x-ray journey does an amazing job of illuminating the silent alchemy of social, political, philosophical, and economical variables that resulted in a discriminatory system that promoted and led institutionalization. What does this have to do with ageism? The process that took us from a society that adapted to the individuals to a society that expects individuals to adapt to its arbitrary standards is still at work today. It has just changed its focus.
Tell us a bit about yourself and how you started your research.
After I left university, I worked with children with learning disabilities and then with adults. That became what I did for my whole life really. I worked for a short time in a mental handicap hospital, then I helped people getting out of hospitals, working with them in the community, helping and supporting them. I ended up working as a consultant for local, and national government, and the NHS. I always had an academic interest in my life. When I was in my forties, I became very interested in the history of the people I was working with. I was surprised that nobody was writing about them. They didn’t have an identity in history. I did a masters degree while I was working in my fifties and then a PhD, which formed the basis of what I wrote about in the book. I made a late switch into academia.
Why did you decide to turn your research into a book?
I did some post-doc research, but I was very keen that this research got out to a wider audience. It is a notable fact that there’s not a lot of interest in academia for this subject, although I had a fabulous supervisor, Joanna Bourke, who writes on the history of gender. I wanted the story to reach the wider audience. I wanted to reach families of people with learning disabilities and people who work in the field as well. One of the things I often noticed was a lack of curiosity by people who worked in the field about what happened before.
It seems that we never question the system.
I’m glad you said that. As I began to write it, I began to think that this isn’t just the story of a particular group of people. This has much bigger implications for who belongs and who does not. What does inclusion mean and what does community mean? People with learning disabilities have been described as the ultimate out-group of all the out-groups. It is a group against whom people often define themselves.
What is the incident that sparked the idea of the book?
There’s an incident I describe at the beginning of the book. When I came back to England from working abroad I got a job as a nursing assistant in what was known as a mental handicap hospital. It was all men, and they had all been in hospital for their whole lives. They came in at the age of five, six or seven and most of them were in their sixties or seventies. Just walking into it, you had a feeling of walking into another world that operated completely differently. I recount the incident in the book where, at the end of my first shift, I was sitting in the nurses’ office and I read case notes of one of the men whom I met for the first time that day. I called him G. and the opening line of the case that was written when he was admitted at six years old said: “G. is a bat-eared cretin.” Cretin was a term of abuse, bat-eared an insult you could hear in a playground at school. I thought: “What on earth am I seeing here? What am I reading?” I checked it out and bat-eared cretin was a correct clinical term to describe a particular condition and appearance. And that just triggered me to find out what has happened. Why has this child been labeled this way? Why have they been locked up in an asylum? Why have they been locked up all their life? Why couldn’t they be out with the rest of us? I thought about all the things that happened since this man had gone into the hospital in the 1920s: The Great Depression, Fascism, the Second World War, the Holocaust, the nuclear arms race, the Cold War, the Hippy Revolution. He just lived through all these things, but nothing has changed, it was like this eternal childhood. He was put into this hospital and never allowed to change, to have any ambitions, a family. From when I was in my twenties, I wanted to understand this history. Why has this happened? There is a lot of interest in the story of asylums, but I was asking myself, what happened before then? Before we had asylums, what sort of lives did people live?
You called it "the great incarceration." Can you tell us more about it?
The name was coined by Michel Foucalt, the French philosopher and political activist. I use it in a slightly different way from him. What I describe in the book is that there is this journey, where people lived in communities. There were people with learning disabilities and they were known as idiots at the time. They lived in the neighbourhood and in the families into which they were born. There was this huge change in Britain in the nineteenth century when people became objects of the institution. Institutions were built throughout the nineteenth century for segments of the population who were no longer seen as fit to live in a society they were born into. They were separated and that’s what I call "the great incarceration." It included lunatics, (mentally ill) and others. At the beginning of the nineteenth century, maybe two thousand people were in these institutions, but by the end of the century, they were over one hundred thousand. That carried on into the first half of the twentieth century. The final bit of this journey is what I called “The great release,” when people left these institutions and returned to their communities, which really started in the 1980s. So it’s a journey from the community to the institutions and back to the community over three hundred years.
Words play a fundamental role in discrimination. You noticed that the words used to label people with learning disabilities changed with time. Why was it so and what can we learn from this change?
The language is fascinating. You begin with this simple word “idiot” which didn’t carry the same charge in the eighteenth century as it carries today. It was a general term to describe people who had a lack of mental faculty; they couldn’t mentally manage some things other people could. They needed more help with daily life. It was a neutral term, although it was starting to develop its identity as a term of abuse as well. The language started to change in the nineteenth century and I associate this with the medicalization of learning disabilities. The medical professionals became interested although they weren’t interested before, because idiocy couldn’t be cured, it was who a person was. Lunacy could be cured; they could find a way to restore equilibrium, to restore health. The medical profession from the early nineteenth century, particularly in France, started to take an interest and started to see themselves as the people who can identify this thing called idiocy and that they can be responsible for its treatment, and for the management and control of this group of people and the terminology started to come in.
And then you had this incredible acceleration, a torrent of vocabulary that has been used to describe this group as mental defective, morons, cretins, imbeciles, the mentally deficient, the mentally subnormal, the mentally handicapped, the learning disabled. Now we have the cognitively disabled, the intellectually disabled. This language is constantly changing; it changed four times since I started working in the field forty years ago. There are a number of explanations and one of them is that there can be a very rapid journey from a clinical term, which describes these people, to an abusive term. The clinical term is often taken and then used as a form of abuse. Think of cretin and moron. The language has to change because it is becoming insulting. But it is not a total explanation. Some words, like moron, were coined by the medical profession at the beginning of the twentieth century deriving from the Greek for a stupid person and they were never designed to be neutral, they were insulting in the first place.
In the book, I argue that two other things happened with language. One of the things is that when a new word is coined, this is a power grab for control by a group of professionals who wish to coin a new term in order to show their ownership of these people. The medical profession had coined mental deficiency, psychologists have coined cognitive disability, academics have started to take more of an interest in the subject and they have coined the term intellectual disability. I argue that people describe this condition as the loss of the thing that worries them the most. The medical profession in the nineteenth century used the term mental defective, which is a word that is used for a machine. If you think about the direction the medical profession was heading at that time they basically set themselves the task of curing all disease, making everybody healthy and perfect. The worst thing for them was a defect.
Emily Dickinson wrote, “Much Madness is Divinest Sense.” Maybe we locked people up because we did not want to listen to the truth they spoke.
What unnerves people is having a group of people that are not behaving the way other people think they should be behaving. We got this idea of the fool who speaks the truth. We got a group of people who don’t learn the rules of society. That can be very unnerving. I wrote about it in the book. Idiots didn't do the right things, they didn’t have the right manners, the right reactions, they didn’t follow the same rules. People were simultaneously fascinated and unnerved by this. The rules for belonging have become very complex and very sophisticated and demanding. Failing to belong is the beginning of the outsider’s status.
Why did it take so long to question the idea of the institutionalization of people?
The institutionalization of the nineteenth century was so comprehensive that it became the norm. The ideas shifted very radically from the idea that pretty much everybody belonged in society to this idea that people should be pushed out of society. It was not just idiots; it was lots of different people. At the time these institutions grew, so did the prisons, so did the houses for unmarried mothers. Then you have the eugenics movement in the 20th century which really labeled this population as dangerous and as a threat and institutionalization had become very, very normalized. Even after the Second World War, it just continued.
What challenged the status quo?
It was a very interesting combination of unlikely allies. First of all, in the 1950s, families became more assertive, more ready to question medical authorities. People were told: “You have a defective child, put him in an institution, forget about him and try to have another one.” Believe me, people were told this right to the 1970s. I have countless, countless accounts of this happening. You started to have the self-help parents group in the UK, America and Europe. Parents began to say, we want to keep our child. You start to get an opposition to medical authority. But in Britain, the unlikely liberator of people with learning disabilities from the institutions was Margaret Thatcher. There was a series of scandals in hospitals uncovered by television and media, but from Thatcher’s point of view, it was actually anti-economic, and for the right-wing movement the over-intervention of the state in people’s lives was harmful. You had this strange alliance from some people of the left who thought that it was unfair to keep people in these institutions and people of the right who had similar views for different reasons. The movement didn’t come from within. It didn’t come from doctors, nurses, and psychologists. They argued that the hospital could be improved. It is when outsiders came to work in these hospitals and asked: "what on earth is going on here, what are we doing?"
Do you see a link with the rise of capitalism?
I think there is a link, but the rise of capitalism doesn’t really explain the institutionalization of people with learning disabilities. And I don’t think the Industrial Revolution explains it either. My argument is that there was a very significant change in thinking that happened after the French Revolution. That change in thinking happened both on the right and on the left. Those who supported the French Revolution developed the idea of the citizen, the new person in a democracy, a person who had rights and contributed to society. It was a very idealistic vision of society moving gradually towards perfection through education, improvement, and cooperation. It was very noble thinking but it didn’t work for people who were ‘idiots.’ To have the rights of a citizen, you also had to exercise the responsibilities of an active citizen. Those who couldn’t or wouldn’t, became a problem for radical people. In the utopian vision of a society with no disease there was no space for people with disabilities. Simultaneously, on the reactionary right, there was this reaction to the French Revolution, particularly in England where there was great fear that the revolutionary ideas would spread to here.
What was lost was the easy-going tolerance of the preceding centuries. It was all about people having to know their place. For the Evangelical, it was people have to do the job God put them on earth for and there was this drive toward cleaning up the streets, having a much more disciplined and orderly society. The nineteenth century looked back at the eighteenth century with horror. People with disabilities were caught between these two movements, the radical of the left and the reactionary of the right. You also had much stronger states. In the eighteenth century, things were determined locally, at a parish level, but you then come into a time of big national solutions to problems. At this time, people with learning disabilities have begun to be seen as a problem, whereas before they were seen as something a bit different and a bit odd, not really a problem or a threat. More and more people are starting to get the vote, there is universal education and people questioned, are we letting them vote and are we letting them have an education? Whereas before, no one voted, no one was being educated.
How did society deal with people with learning disabilities before?
There’s a very wide range of people with learning disabilities. When I looked at court records of the eighteenth century, a lot of these people were working. Some were married, having children, and most were part of the family. They often did unskilled jobs, but a lot of people were working as servants. They were not being employed as court jesters or court fools, they were just being employed as servants and if they got in trouble because they stole something from a shop, their employer would show up and say, please don’t hang him, I will make sure he doesn’t get in trouble anymore. There was an incredibly inclusive attitude.
As you wrote, society adapted to the variability and now we do exactly the opposite, right?
Yes. I’m not idealistic about eighteenth century society. It was very tough for everybody. What interested me is that a person’s identity was not completely defined by their learning disabilities, which is what tends to happen today. You were not defined by your diagnosis. It was not really a diagnosis, it was just the way you were.
You pointed out that bureaucracy and social policy build invisible asylum walls around people with intellectual disabilities. Is it the same with old age?
Since the closure of the institutions, things have gone much better. Many people are living a different life compared to what had happened in the past. We have actors with learning disabilities, we have sports people in the Paralympics, we have people elected in local councils. I wrote about what I called “conditional acceptance.” People have come back to the community, but we are giving them a conditional acceptance. They have to abide by the rules and conform to expectations and if they don’t they can lose their place in the community. So, if you have a learning disability these days you undergo this constant process of risk assessment, care planning, you have meetings with your social worker and if something goes wrong, you’re called in and there are discussions. You can do most of the things that we all do, like losing your temper, decide you want to stay inside for a week because you don’t feel like going out, but if you are a person with learning disabilities, that becomes a big issue. You are assessed if you are a risk to yourself and other people. The spontaneity of your life is gone. The lockdown is very similar to the sort of life that people with learning disabilities are living. You have this bureaucracy around. And then, we have some surviving institutions here, which are called “assessment and treatment” which are repeating the mistakes of the asylums.
What similarities do you notice in the way we treat older people?
One of the striking parallels for me is that we talk about people with learning disabilities as if they are a homogenous group. Once you have that label attached to you, there is a series of expectations attached to you, what sort of life you live. The variety of people in this group is huge: people who have no communication, need social care, medical support for all their lives and then also people with mild disabilities, who maybe struggle with reading and writing, don’t cope well with cooking very well for themselves. When you start digging into this group, it becomes absurd. There are no links between these people apart from the label that is applied to them. Old age is very similar. The variability is enormous. Somebody who needs support might be 65 years old and somebody who is independent might be 85 years old. The category and the label can have a very big impact on people’s lives. A restraining effect.
On the other hand, what contributed to inclusivity?
There’s a parallel. If you look at older people in the eighteenth century and before, people tended to look at a person as a whole, with his and her qualities too. The nineteenth century did the same thing for older people as it did for people with learning disabilities. It started to identify the old people as a group that didn’t fit in. One of the parallels I make is with the Industrial Revolution and the need to be productive. One of the arguments I make against the Industrial Revolution and Capitalism argument is the assumption that many of the people with learning disabilities couldn’t work - although in fact they were put to work in the institution as soon as they entered. The institution started to become the place for those who could not look after themselves, the big destination for destitute older people. For older poor people in the nineteenth century, the destination was the workhouse if they couldn’t be supported in their home. We got a similar shift and this absolute medically led craze for diagnosis and labelling. The medical profession took over care for the elderly in the same way they took over the learning disabled. Previously they were not trying to treat old age, it was accepted that people got old and eventually died, whereas now there’s this idea that there’s always a medical intervention that can make things better. But what that does is puts you under the control of your diagnosis, of your label, it takes away the rest of your identity.
How can we try to revive and protect the rights of the older generation? What can we learn from your book?
The duty of every community is to adapt to all its members. In that lies the task we have to do and we have lost sight of. We cannot return to the small parish community we had in the eighteenth century, but we can learn from these communities about how they adapted themselves to people. I think the starting point is what we regard as a human being. All the time, we’re always asking this question: what does it mean to be human? We suggest things such as the ability to laugh, language, morals, the ability to think in abstract terms. The problem with all that for me is that you will always get some people who do not conform to those characteristics and you start to exclude people. What I never hear is that to be human is to be born to two human parents. But people tend to put up these barriers that you need to defeat in order to be fully adopted as a human person. A lot of racism also lies at the heart of this thinking. This applies to being older as well.
As you age if you start to lose some of your faculties, or behave differently from how you were used to, you’re seen as losing your humanity. I think that what the eighteenth century did quite unconsciously was none of these things. They said: if someone is born into our community, they are human. We have to try to recapture that. Stop setting all these rules and regulations and regain what it means to be human. We need to say, this is who you are, this is what you can do and let’s find a way to make you part of this community. I know I make it sound very simple, I know it’s not simple, but that’s the starting point.
