TBI: Aphantasia; Permanent Present; imagination blown away but this is an interesting article in the context of traumatic brain injury, dementia, stroke and many other health conditions. For me, it is reading via computer or books from early morning to late at night. Source: The Guardian

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The ObserverPsychology

‘I just go into my head and enjoy it’: the people who can’t stop daydreaming

Purple outline of a man's head, with no face, against the sun and among the clouds

Illustration by Philip Lay/The Observer.

Psychiatrists may soon recognise ‘maladaptive daydreaming’ as a clinical disorder. But what is it, and how can it be treated?

David Robson Sun 28 Aug 2022 10.00 BST Last modified on Sun 28 Aug 2022 17.51 BST

Every day, Kyla* travels to a fictional universe with advanced space travel. It’s not real, of course – but an incredibly vivid daydream, centred on a protagonist with a detailed history. “It covers 79 years in the life of my main character,” she says. “I know how the whole thing plays out, and I can drop into it at whatever point I want to experience.”

Today, this habit is pure entertainment, which she limits to just an hour a day. “It’s like watching Netflix,” she says. “I just go into my head and enjoy it.” In the past, however, she had felt that her fantasies had become all-consuming. “There was a point where it was like an addiction.”

Karina Lopez tells a similar story. Her daydreams centre on conversations with different characters – some real, some imaginary. She’ll replay the same scenario, tweaking the details – a process she finds incredibly pleasurable. “As soon as I wake up, I want to daydream.”

At college, she would become so lost in these imaginings that she would forget to study for her exams or run errands. “I put off so many things – but in the moment it feels so good,” she says. On average, she now spends about three hours a day immersed in daydreams, but on bad days in the past, she could spend as many as six hours locked in her inner world.

Such reports are of increasing interest to psychologists, who have started to identify a subset of the population marked for their unusually immersive daydreams. At their best, these vivid and compulsive fantasies can be a source of pleasure and comfort, but they can also be a serious cause of procrastination and distraction, and can prevent people from maintaining their social connections, looking after their health or even eating regular meals.

With research revealing that as many as one in 40 people may experience these problems, it seems increasingly likely that “maladaptive daydreaming” will soon be formally recognised as a psychiatric disorder. So what is it? And how can it be treated?


Prof Eli Somer, a clinical psychologist at the University of Haifa in Israel, was the first to identify the phenomenon. In his practice, he came across six patients who described entering vivid fantasies as a way of soothing their psychological pain.

In the wake of a romantic breakup, one patient simply continued the relationship in his head; another, facing extreme loneliness, would imagine the conversations he wished he’d been able to have. “It’s an escape from what is happening in the here and now,” a third patient told him. “There are many circumstances in daily life that frighten me. Daydreaming helps me not feel the fear.”

Somer recognised their reports as a form of dissociation that had not been described in the scientific literature before, and so, coining the term maladaptive dreaming, he wrote a paper describing the phenomenon for the Journal of Contemporary Psychotherapy.

For many maladaptive daydreamers, the fantasies are so rewarding that they take precedence over real life experiences

It was immediately apparent that these intense fantasies were very different from the kind of mind-wandering the average person might experience. “Mind-wandering can be fleeting thoughts,” explains Dr David Marcusson-Clavertz, a psychologist at Linnaeus University in Växjö, Sweden. “You might be reading a book and then spontaneously think of an old friend.” While the people with maladaptive daydreaming might also be prone to these distractions, their fantasies are complex, detailed and compulsive.

Consider the experiences of a maladaptive daydreamer called Michelle. Her daydreams have involved international travel, working as a reporter at a disaster zone and conducting important research about Covid. The story she constructs is often so complex that she can spend hours finding the specific details on the internet to fuel the fantasies. “In my head, I see it very clearly – as if I was picturing what I did yesterday.”

Many maladaptive daydreamers report being prompted by regular movements – and they may even use rocking motions or pacing to get into the correct mental zone, a little like self-hypnosis.

Despite the sheer detail of their fantasies, immersive daydreamers do not confuse their fantasies with reality, and they don’t tend to come out of nowhere. “It’s voluntary – it’s not intrusive,” says Somer. This makes it different from psychosis, in which someone has less awareness of their mental state, and the daydreaming is not – by itself – harmful for someone’s mental health.

The problems come when it is taken to excess. As Somer’s original paper had noted, many people use their daydreams to escape from negative emotions. This might offer short-term relief, but it can prevent the person from confronting the issues that may be at the source of their distress. Along these lines, a recent study by Somer and Dr Nirit Soffer-Dudek, of Ben-Gurion University of the Negev, asked participants to keep a daily record of their feelings and behaviours over a two-week period. They found that negative emotions often rose after a day of particularly excessive daydreaming.

A study by Prof Alessandro Musetti at the University of Parma in Italy, meanwhile, examined people’s reactions to the early stages of the Covid-19 pandemic. He found that maladaptive daydreamers were especially likely to experience higher levels of depression and anxiety, which again suggests that the escape into an alternative reality does little to resolve the actual distress that someone is facing.

For many maladaptive daydreamers, the fantasies are so rewarding that they take precedence over real life experiences. Consider the words of Pietra: “Nothing else feels as enjoyable.” She says that at one point in her life, she could not go 10 minutes without entering a daydream. “I would go into them no matter what I was doing.” This interfered with her academic studies, her relationships, and even eating regular meals. “I’d postpone my meals by two or three hours while I starved,” she says. “And food was right there to be eaten.”

Such reports have led some psychologists, including Somer, to view maladaptive daydreaming as an addiction, akin to compulsive gambling or alcoholism. “Immersive daydreaming could be like drinking a glass of superb wine,” he says. “But downing a bottle of vodka every day is not good.”

Intriguingly, maladaptive daydreaming seems to be far more common among people who have been diagnosed with ADHD

Despite the severe difficulties they are facing, many of the maladaptive daydreamers find it hard to share their experiences with the people around them. “I’ve only told three people and they had similar reactions: they looked as if they wanted to laugh,” Karina Lopez tells me. Michelle agrees that, from the outside, the issues can seem superficially trivial. “It seems like something that you could very much control,” she says. “But trust me: I’ve tried.” For this reason, she says, it has been harder to disclose her maladaptive dreaming than her anxiety and depression, even with the stigma surrounding those mental illnesses.


Despite our lack of awareness and understanding, these kinds of experiences are surprisingly common. In a survey of more than 1,000 Jewish Israeli participants, Soffer-Dudek found that about 2.5% of the population met the criteria for maladaptive daydreaming. That’s one in 40 people, which would mean that the condition is more common than anorexia nervosa or obsessive-compulsive disorder, and similar in prevalence to generalised anxiety disorder. While further studies will need to establish the prevalence among larger and more global samples, it seems probable that at least one of your acquaintances will be struggling with an urge to escape into their immersive fantasies.

Intriguingly, maladaptive daydreaming seems to be far more common among people who have been diagnosed with attention-deficit and hyperactivity disorder, with a recent paper reporting a prevalence of about 20%. (Moreover, 77% of people with maladaptive daydreaming have been diagnosed with ADHD.) The constant desire to slip into daydreams, it seems, is contributing to difficulties in concentration and focus – and this group may require different forms of treatment from other people with ADHD.

Given these findings, Somer believes that maladaptive daydreaming should be recognised formally as a disorder by organisations such as the American Psychiatric Association, which publishes the influential Diagnostic and Statistical Manual of Mental Disorders. “We have accumulated a body of evidence to show in the reliability of this construct, and that it cannot be better explained by any other psychiatric condition,” he says, adding that he has already received positive feedback for the proposal.

Musetti agrees that we need greater awareness among health professionals. He says there’s a quickly growing number of people online describing maladaptive daydreaming, but these bloggers often hit a wall when they try to get professional help. “They often won’t find any recognition of their suffering, or a suitable treatment,” he says.

Exactly how maladaptive daydreaming should be treated is an open question – though there are promising signs that people can learn to control their habit. In 2018, Somer published a case study of a 25-year-old undergraduate named Ben who would spend around three hours a day in his fantasies. Ben had originally been diagnosed with ADHD and was given a course of Ritalin, which only increased his tendency to daydream.

Working with Ben to find a potential solution, Somer suggested cognitive behavioural therapy and mindfulness training. Ben would note down the circumstances that seemed to be associated with his maladaptive daydreaming, for example, and prepare careful plans for each day to try to reduce the temptation. And when he found himself falling into his fantasies, he would try to interrupt the daydreams’ plots with unsatisfying endings. By the end of the six months, he had reduced his habit by about 50%.

Based on this success, Somer has since conducted a clinical trial with hundreds of participants. Although the study has not yet been published, he says the results are “very encouraging”.

Both Somer and Musetti agree that in many cases, it may not be possible, or even desirable, for people to eliminate their daydreams altogether; instead, the aim should be to enable them to regulate their habit, and to find alternative ways to process their negative emotions. “They could perhaps confine it to certain times of day,” says Somer.

Kyla, for one, would be reluctant to lose her daydreams completely. While her fantasies had once been maladaptive, they no longer dominate her life. Rather than using the daydreams simply to escape negative feelings, she says she can use conversations with her characters to gain perspective on problems. In one mental health crisis, she believes that this even saved her life. To suppress the daydreams altogether would be impossible, she thinks. “It’s just how your brain works – you can’t just turn it off.”

* To preserve their privacy, Kyla, Michelle and Pietra asked the Observer not to print their surnames

  • The Expectation Effect: How Your Mindset Can Transform Your Life by David Robson is published by Canongate (£18.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply

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TBI no more ADHD so massive mental impact. Diagnosed with cancer in 2017 now a survivor and wrote book; speak about forever presenting of being in the now and keeping engaged via twitter, emails and constant routine.

Fortune Favours the Brave

by Michelle Marcella Clarke

Amazon

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Memory: Stop drinking, keep reading, look after your hearing: a neurologist’s tips for fighting memory loss and Alzheimer’s. The Guardian

Memory

Stop drinking, keep reading, look after your hearing: a neurologist’s tips for fighting memory loss and Alzheimer’s

‘The art of memory is the art of attention’ … Richard Restak at his home in Washington, DC.
‘The art of memory is the art of attention’ … Richard Restak at his home in Washington, DC. Photograph: Greg Kahn/The Guardian

When does forgetfulness become something more serious? And how can we delay or even prevent that change? We talk to brain expert Richard Restak

Gaby Hinsliff

Gaby Hinsliff

Wed 17 Aug 2022 06.00 BST

You walk into a room, but can’t remember what you came in for. Or you bump into an old acquaintance at work, and forget their name. Most of us have had momentary memory lapses like this, but in middle age they can start to feel more ominous. Do they make us look unprofessional, or past it? Could this even be a sign of impending dementia? The good news for the increasingly forgetful, however, is that not only can memory be improved with practice, but that it looks increasingly as if some cases of Alzheimer’s may be preventable too.

Neuroscientist Dr Richard Restak is a past president of the American Neuropsychiatric Association, who has lectured on the brain and behaviour everywhere from the Pentagon to Nasa, and written more than 20 books on the human brain. His latest, The Complete Guide to Memory: The Science of Strengthening Your Mind, homes in on the great unspoken fear that every time you can’t remember where you put your reading glasses, it’s a sign of impending doom. “In America today,” he writes “anyone over 50 lives in dread of the big A.” Memory lapses are, he writes, the single most common complaint over-55s raise with their doctors, even though much of what they describe turns out to be nothing to worry about.

The Complete Guide to Memory: The Science of Strengthening Your Mind cover

Coming out of a shop and not being able to remember where you left the car, for example, is perfectly normal: it’s likely you just weren’t concentrating when you parked, and therefore the car’s location wasn’t properly encoded in your brain. Forgetting what you came into a room for is probably just a sign you’re busy and preoccupied with other things, says Restak.

“Samuel Johnson said that the art of memory is the art of attention,” he says, down the line from his office in Washington DC (at 80, Restak is still a practising clinical professor at George Washington Hospital University School of Medicine and Health). “Most of these sins of ‘memory loss’ are sins of not paying attention. If you’re at a party and you’re not really listening to someone, because you are still thinking about some work-related matter, suddenly later you find you can’t remember their name. The first thing is you put the information in memory – that’s consolidating it – and then you have to be able to retrieve it. But if you’ve never consolidated it in the first place, it doesn’t exist.”

But what if you forget where you left your car keys, and eventually find them inside the fridge? “That’s often the first sign of something serious – you open up the refrigerator door, and it’s the newspaper, or your car keys, inside. That’s a little bit beyond forgetful.”

Memory does vary, he points out, and some people will always have been scatty. But the real red flag is a change that seems out of character. If you’re a keen card player who prides yourself on always keeping track of which cards have been played, and suddenly realise you can’t do that any more, it could be worth investigating. Similarly, Restak has noticed that many patients in the early stages of dementia stop reading fiction, because it’s too difficult to remember what the character said or did a few chapters earlier – which is unfortunate, he says, because reading complex novels can be a valuable mental workout in itself.

Restak and his wife are currently on Alexandre Dumas’s The Count of Monte Cristo, which has a complex sprawling cast: “It’s an exercise in being able to keep track of characters without going backwards from one page to another.” If that’s already difficult for you, he says, it’s fine to underline the first mention of a new character and then flip back to remind yourself later if necessary. “Do whatever you have to, to keep yourself reading.”

Like following a recipe, keeping track of fictional plots is an exercise of working memory – as distinct from short-term memory (temporarily storing something like a phone number that you can safely forget the minute you’ve dialed it) or episodic memory, which covers things like recollections of childhood. Working memory is what we use to “work with the information we have”, says Restak, and it’s the one we should all prioritise. Left to its own devices, he points out, memory naturally starts to decline from your 30s onwards, which is why he advocates practising it daily.

‘The way we frame something in our memory is how we then perceive the world around us’ … Richard Restak.
‘The way we frame something in our memory is how we then perceive the world around us’ … Richard Restak. Photograph: Greg Kahn/The Guardian

Restak’s book is full of games, tricks and ideas for honing recall, often involving creating vivid visual images for things you want to remember. He holds a mental map of his neighbourhood in his head, incorporating visually familiar landmarks – his house, the local library, a restaurant he often goes to – and for each item on a list he wants to remember, he will create a memorable visual image and attach it somewhere specific on the map. To remember to buy milk, bread and coffee later, for example, he might envisage his house transformed into a carton of milk, the library full of loaves rather than books, and a giant cup of coffee spilling out of the restaurant.

The book also touches on broader lifestyle advice. Recently, research from the Lancet’s commission on dementia suggested up to 40% of Alzheimer’s cases could be prevented or delayed – much like heart disease and many cancers – by limiting 12 risk factors, from smoking to obesity and heavy drinking.

Restak advises his patients to quit alcohol by 70 at the latest. Over 65, he writes, you typically have fewer brain neurons than when you were younger, so why risk them? “Alcohol is a very, very weak neurotoxin – it’s not good for nerve cells.”

He’s also an advocate of the short afternoon nap, since getting enough sleep helps brain function (which may help explain why sleep-deprived new mothers, and menopausal women suffering from night sweats and insomnia, often complain of brain fog).

More unexpectedly, he recommends tackling hearing or vision problems promptly, because they make it harder to engage in conversations and hobbies that keep the cogs turning. “You have to have a certain level of vision to read comfortably, and if that’s missing then you are going to read less. As a result of that, you’re going to learn less and be a less interesting person to other people. All of these things really come down to socialisation, which is the most important part of keeping away Alzheimer’s and dementia, and keeping your memory.”

Socialisation is the most important part of keeping away Alzheimer’s and dementia, and keeping your memory

Is he saying that honing your memory can stop you getting Alzheimer’s? “No one can guarantee that anybody else is not going to get dementia. Take somebody like Iris Murdoch (the late writer, who suffered from it) – there’s probably not a more brilliant woman in all of Europe, so it shows that it can happen. But I compare it to driving a car: you can’t guarantee you won’t get in an accident but by wearing your seatbelt and checking your speed and keeping the car maintained, you can lessen your chances.”

Not all memories, however, are ones people want to treasure. Many have mental images they’d rather forget, whether it’s of an embarrassing mistake or a painful failed relationship, or intrusive flashbacks from post-traumatic stress disorder.

The fantasy of wiping the slate clean is a pervasive one in popular culture, from the film Eternal Sunshine of the Spotless Mind (about a couple who break up, and use a futuristic machine to zap memories of each other) to the Men in Black franchise, where alien-fighting secret agents electronically erase the memories of anyone who sees them in action, thus protecting mere mortals from the truth about what’s out there.

These may be strictly fantasies but we already have the technology, Restak suggests, to inhibit people from laying down memories that might in future haunt them. Beta blockers, drugs sometimes used to treat high blood pressure, have been found to dull the emotional response triggered when something frightening is recalled, but Restak says there’s evidence they also interfere with the consolidation of events as memories.

“There are actually discussions about whether these drugs should be part of the armoury that would be used if we have got to send people into terrible scenarios, such as after a shooting – that must be a horrible experience, to go in there and clean these places up.” But it’s a blunt tool – the drugs can’t distinguish between memories that might be useful in future to emergency first responders, and ones that are simply distressing – and raises complex questions about the ethics of tampering with people’s minds.

Don’t just look on dementia as a hopeless situation, although it’s a very frustrating one

Restak also highlights concerns about what he calls “memory wars”, or attempts to influence a nation’s collective memory by disputing what a particular event or period means. “The way we frame it in our memory is how we then perceive the world around us, and that’s what is encoded in the memory,” he says, pointing to recent political arguments in the US over whether the technical recession the country has entered – defined as two quarters of economic contraction – is actually a “real” recession. “It’s important because if you think you are in a recession you have certain beliefs and modes of action, and that’s how we are going to remember July 2022.”

And, as he argues, memory is intrinsic to who we are. It binds families and couples together, as we reminisce about our shared past. For individuals, meanwhile, past experience gives life meaning and texture. “We are what we can remember. The more things you can remember, the more clearly, the more full and enriched our personalities,” says Restak, who argues that the personalities of dementia sufferers can become flatter and more attenuated. “People say ‘Oh, they don’t seem to be the same person.’” Perhaps that’s why we fear Alzheimer’s so much: memory is so closely allied to a sense of self.

Yet even after memory loss has set in, it’s not necessarily too late to help people hold on to whatever’s left. One neurologist Restak knows had two patients who “weren’t sure where they were or what day it was”, but could still play a decent game of bridge. If someone you love has Alzheimer’s, Restak says, don’t upset them by constantly challenging mistakes or memory lapses; instead, meet them where they are now.

“What are they still interested in? Talk about that, work with that, because a lot of things stay within normal range even with a pattern of dementia,” he says. “You don’t just look on it as a hopeless situation, although it’s a very frustrating one and it’s very sad.” Where a flicker of memory remains, perhaps, there’s hope.

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In a Perpetual Present: … at last I am finding out some answers to traumatic brain injury and what really can happen and why the professionals assure you that no brain injury is the same but that’s all they have to say. 30+ year on and I each day keep looking for anwsers. So much of this article is “me”. It maybe the reason when I got breast cancer and wrote book – I just cannot grasp its significance or for that matter remember I have had cancer. Technology has been my modus operandi of coping especially Twitter. I too have given up on notebooks.

FSB_Autobiomemory_desktop-3.jpg

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Like many American couples of modest but comfort­able means, Susie Mc­Kinnon and her husband, Eric Green, discovered the joys of cruise vacations in middle age. Their home in a quiet suburb of Olympia, Washington, is filled with souvenirs and trinkets from their travels. There’s a plastic lizard in the master bathroom with the words “Cayman Islands” painted on it. From Curaçao there’s a framed patchwork collage made of oilcloth hanging in the entrance hall. On the gray summer day when I visit them, we all sit comfortably in their living room, Green decked out in a bright shirt with “Bermuda Islands” emblazoned on it, from a cruise in 2013. As they regale me with talk of their younger selves and their trips to Jamaica, Aruba, Cozumel, and Mazatlán, they present the very picture of well-adjusted adulthood on the verge of retirement.

Except for one fairly major thing.

As we chat, McKinnon makes clear that she has no memories of all those cruises. No memories of buying the lizard or finding that oilcloth collage. She doesn’t remember any vacation she’s ever taken. In fact, she cannot recall a single moment in her marriage to Green or before it.

Before you start to brace yourself for one of those stories—about the onset of dementia, the slow dissolve of a marriage into a relationship of unrequited love, the loss of self—let me reassure you: McKinnon hasn’t lost anything. She’s never been able to remember those experiences.

For decades, scientists suspected that someone like Susie McKinnon might exist. They figured she was probably out there, living an ordinary life—hard to tell apart from the next person in line at the grocery store, yet fundamentally different from the rest of us. And sure enough, they found her (or rather, she found them) in 2006.

“I don’t remember being smaller or having to reach up for things. I have no impressions of myself as a kid.”

McKinnon is the first person ever identified with a condition called severely deficient autobiographical memory. She knows plenty of facts about her life, but she lacks the ability to mentally relive any of it, the way you or I might meander back in our minds and evoke a particular afternoon. She has no episodic memories—none of those impressionistic recollections that feel a bit like scenes from a movie, always filmed from your perspective. To switch metaphors: Think of memory as a favorite book with pages that you return to again and again. Now imagine having access only to the index. Or the Wikipedia entry.

“I know bits and pieces of stuff that happened,” McKinnon says of her own childhood. But none of it bears a vivid, first-person stamp. “I don’t remember being shorter or smaller or having to reach up for things. I have no images or impressions of myself as a kid.” She finds herself guessing a lot at what her experiences must have been like: She assumes the Cayman Islands were hot. Perhaps she and Green walked around a lot there. “It was probably sometime between 2000 and 2010,” she ventures.

The way McKinnon experiences life scrambles much of what we presume is essential to being human. No less a figure than the philosopher John Locke argued that memory, the kind McKinnon lacks, is the very thing that constitutes personal identity. It’s hard to even imagine what it would feel like to be without these kinds of memories; when we do, we picture disaster. Last year’s blockbuster Pixar film, Inside Out, hinged on the idea that if the main character loses her core memories, then her “islands of personality” collapse into nothingness.

McKinnon has no core memories that she is aware of. But there can be no doubt of her personality. She is a liberal white woman who married a black man despite her conservative father’s disapproval. A Catholic who decided somewhere along the way that religion wasn’t for her. She’s bashful and sensitive. Intuitive, curious, and funny. She has a job—she’s a retirement specialist for the state of Washington—and she has hobbies, values, beliefs, opinions, a nucleus of friends. Though she doesn’t remember being a part of the anecdotes that shaped her into this person, she knows very well who she is. Which raises the question: Just how expendable is this supposedly essential part of being human after all?

Music has a powerful way of evoking memories. For McKinnon’s husband, this is especially true of songs by Motown acts like the Temptations and the Miracles. They take him back to weekend nights in Chicago when he was young, when he paid a quarter to go into someone’s basement and make out with a girl as music played in the dark. People called them quarter parties. Listening to Motown also reminds him of Saturdays with his cousins at the Regal, where for three bucks he watched performers like Marvin Gaye. It was always crowded and hot and smelled of stale popcorn. The guys wore $10 Ban-Lon shirts. The women wore ankle-length dresses. Most had processed hair, but Green was just starting to grow out an afro.

He grins as he describes the scene, peering through the eyes of a version of himself from decades ago. This was before he and McKinnon met as coworkers at a hospital in Illinois; long before they moved west and started going on cruises. “She was friendly—well, she was sexy,” Green says of when they first met. To McKinnon, all this mental time traveling seems magical. “It’s hard for me to believe,” she says.

Our ability to do this—to be the first-person protagonist of our own memories—is part of what psychologists call autonoetic consciousness. It’s the faculty that allows us to mentally reenact past experiences.

Memory researchers used to believe there was just one kind of long-term memory. But in 1972, Endel Tulving, a Canadian psychologist and cognitive neuroscientist, introduced the idea that long-term memory comes in multiple forms. One is semantic memory, which allows us to remember how to spell a word like, say, autonoetic. Years from now, you might recall how to spell it, but maybe not when and where you were when you first came across the word and its definition, perhaps in WIRED.

McKinnon performs in a choral ensemble. Lyrics and melodies stick with her, thanks to her intact semantic memory.

Tulving argued that autonoetic consciousness is crucial for the formation of another kind of long-term memory—episodic memory—which integrates time and sensory details in a cinematic, visceral way. Remembering where and when you learned how to spell autonoetic: That’s an episodic memory.

As it happens, McKinnon shares Green’s love of music. She even performs with a choral ensemble. Lyrics, melodies, and harmonies stick with her, thanks to her intact semantic memory. Similarly, she can tell you for a fact that three months ago, she sang a rendition of an old English folk song onstage—a solo. But only Green can supply the scene: how she strolled onto the stage alone and took her place in front of a piano. Green says her performance brought him close to tears. McKinnon thinks she must have felt a mixture of confidence and fear, but really she hasn’t the faintest idea.

She does, however, have a recording, and we decide to give it a listen. She walks over to the living room CD player, pops in a disc, and presses Play. “Are you ready?” she asks nervously. McKin­non retreats into herself, pacing self-consciously between the sofa, dining room chairs, and kitchen counter.

An alto fills the living room, a voice from another time. “The water is wide,” the voice sings. “I cannot cross o’er.” McKinnon notices a tremble in the voice and giggles with surprise. It’s as if she’s experiencing the performance for the first time.

McKinnon first began to realize that her memory was not the same as everyone else’s back in 1977, when a friend from high school, who was studying to be a physician’s assistant, asked if she would participate in a memory test as part of a school assignment. When her friend asked basic questions about her childhood as part of the test, McKinnon would reply, “Why are you asking stuff like this? No one remembers that!” She knew that other people claimed to have detailed memories, but she always thought they embellished and made stuff up—just like she did.

McKinnon’s friend was so disturbed by her responses that she suggested McKinnon get her memory checked by a professional. McKinnon put the exchange aside for almost three decades. Then one day in 2004, she came across an article about Endel Tulving, the researcher who had originally characterized the difference between episodic and semantic memory.

McKinnon read about how, at the University of Toronto, Tulving studied an amnesic patient, K. C., who was in a motorcycle accident at 30 that resulted in brain damage affecting his episodic memory. He could not remember anything in his life except experiences from the last minute or two. Yet despite this deficiency, the patient could remember basic knowledge learned before his accident, like math and history, and when taught new information in experiments, he could retain lessons, even though he could not recall visits to the laboratory where he was taught. His case became crucial to Tulving’s theories about memory.

McKinnon’s brain and life, as far as she knew, seemed to be healthy and intact.

Like McKinnon, people with amnesia usually lose their episodic memories and keep their semantic ones. But amnesiacs tend to come by their memory loss through brain trauma, developmental disorders, or degenerative conditions. And they are often impaired in their day-to-day functioning; they cannot live normal lives. Reading about Tulving’s case studies, McKinnon recognized a resemblance to her own experiences—minus the brain lesions, injuries, or debilitating side effects. Her brain and life, as far as she knew, seemed to be healthy and intact.

One of Tulving’s arguments struck a particular chord. A profile of the psychologist reported his belief “that some perfectly intelligent and healthy people also lack the ability to remember personal experiences. These people have no episodic memory; they know but do not remember. Such people have not yet been identified, but Tulving predicts they soon will be.”

McKinnon felt too intimidated to contact Tulving himself; he seemed too famous. So instead she set her sights on Brian Levine, a senior scientist at the Rotman Research Institute in Toronto who had worked closely with Tulving and whose expertise in episodic and autobiographical memory caught her eye.

On August 25, 2006, McKinnon sent Levine an email that referenced Tulving’s prediction about healthy people with no episodic memories: “I think there’s at least a possibility that I might be one of the people he was describing.

“I’m 52 y/o, extremely stable, with a very satisfying life & well-developed sense of humor. Contacting you is a big (and, frankly, scary) step for me … I’ll appreciate any guidance you may be able to give me.”

“I get a lot of emails from people with various issues,” Levine says. “With Susie, I felt like this was worth pursuing.” So Levine invited McKinnon to his lab in Toronto. His first move, in collaboration with researcher Daniela Palombo, was to begin looking for some underlying physiological or psychological explanation for McKin­non’s apparent lack of episodic memories: a neurological condition, trauma, or brain damage caused by anoxia at birth. They found no such thing.

Next, Levine ran McKinnon through something called an autobiographical interview, to vet her own report that she lacks episodic memories. Before the interview, his lab team spoke with Green, a close friend of McKinnon’s, and McKinnon’s brother and mother, asking each for stories about McKinnon that they would try to verify with her.

When Levine and colleagues quizzed McKinnon about events that her friends and relatives described—like the time she was in The Sound of Music during high school—she had no such recollections, even when she was probed with follow-up questions like “Do you remember any objects in the environment?” The interview seemed to confirm that, sure enough, McKinnon had no recognizable episodic memories.

“If humans can get by so well without episodic memories, why did we evolve to have them in the first place?”

Soon, Levine discovered two more healthy individuals who also seemed to lack episodic memories. Both were middle-aged men with successful jobs, one of them a PhD. One was in a long-term relationship. Levine put both men through the same battery of tests in his lab. He also ran all three of his patients through an MRI machine. Each showed reduced activity in regions of the brain crucial to the mind’s understanding of the self, the ability to mentally time travel, and the capacity to form episodic memories.

Levine published a study about Mc­Kinnon and his two other subjects in Neuropsychologia in April 2015. Since then, hundreds of people claiming to have severely deficient autobiographical memory have reached out to Levine’s team. Each must go through a set of tests as well, he says, and results might lead to only a dozen or so provable cases. But the response suggests that the discovery of McKinnon and the other two subjects wasn’t a fluke. “It raises fairly large questions,” Levine says. “What exactly does recollection do for us?” If members of our species can get by so well without episodic memories, why did we evolve to have them in the first place? And how long are they liable to stick around?

Spend enough time with McKinnon and it’s hard to escape the creeping sense that she’s not just different—she’s lucky. Memories that would be searing to anyone else leave little impression on her. Like the time in 1986 when the couple was living in Arizona and Green was jumped by a group of white men while out fishing. When he came home, his head was covered with welts. “She went to get ice and she started crying,” Green says. He began to cry too. They felt terrorized.

Once again, McKinnon knows the salient facts of the story, but the details and the painful associations all reside with Green. For McKinnon, the memory doesn’t trigger the trauma and fear associated with it. “I can imagine being upset and scared, but I don’t remember that at all,” she says. “I can’t put myself back there. I can only imagine what it would have been like.”

McKinnon also quickly forgets arguments, which might be the reason she and Green have stayed together so long, she jokes. She cannot hold a grudge. She is unfamiliar with the feeling of regret and oblivious to the diminishments of aging. A 1972 yearbook photo shows that she was once a petite brunette with a delicate face framed by a pixie cut. (“Dorky little innocent thing,” she says, looking at the picture.) On an intellectual level, McKinnon knows that this is her; but put the picture away and, in her mind, she has always been the 60-year-old woman she is now, broad-­shouldered and fair, her face pinkish and time-lined, her closely cropped hair white and gray. She doesn’t know what it’s like to linger in a memory, to long for the past, to dwell in it.

Three More Cases That Changed What We Know About Memory

H. M.

In August 1953, doctors in Hartford, Connecticut, removed both hippocampi from the brain of Henry Molaison (H. M.) in hopes of curing his epileptic seizures. The operation had the desired effect, but it also left Molaison with profound amnesia and rendered him unable to form new memories, much to the surprise of his neurosurgeon. He was, however, still articulate, intelligent, and able to learn new skills. Studied for decades by MIT researchers, his case fundamentally transformed how psychologists understand memory: It showed that the brain handles long-term and short-term memory differently and that various functions reside in separate areas of the brain.

K. C.

After a fateful encounter with a bale of hay, a dune buggy crash, and—finally—a motorcycle accident, Kent Cochrane (K. C.) sustained damage to multiple parts of his brain and lost all memory of his past experiences. Cochrane could remember facts but not where he had learned them, offering scientists a clue to the distinction between semantic and episodic memory. In 2005 a team of psychologists including Endel Tulving wrote that K. C.’s case had helped contribute to “the eventual crumbling of the neat and tidy single-­memory, single-locus model of amnesia.”

A. J.

In 2006, Jill Price (A. J.) became the first person diagnosed with highly superior autobiographical memory, a condition marked by an involuntary, extraordinary ability to remember the past. Researchers at UC Irvine found that Price could recall extraordinarily specific and wide-ranging details—the weekday on which a specific episode of a TV show first aired in the 1980s, for instance—going back to when she was 14. The researchers also noted that she displayed OCD-like symptoms. Price quickly became a media sensation, interviewed on national TV and covered in countless articles, including a 2009 WIRED feature that described her as “the Michael Jordan of autobiography.” —Chelsea Leu


More than a decade ago a woman named Jill Price came to the attention of scientists at UC Irvine. She exhibited a condition that is pretty much the direct opposite of McKinnon’s: the researchers called it hyperthymestic syndrome, or highly superior autobiographical memory. Price has an extraordinary ability to recall just about any fact that has intersected with her life: July 18, 1984, was a quiet Wednesday, as she writes in her memoir, and Price picked up the book Helter Skelter and read it for the second time. Monday, February 28, 1983, the final episode of M*A*S*H aired, and it was raining. The next day Price’s windshield wipers stopped working as she drove.

In contrast to McKinnon, who has received relatively little press attention, Price became an instant media sensation. Diane Sawyer had her on air twice in one day. Her powers of memory, after all, seemed supremely enviable, superhuman.

But as the UC Irvine researchers—and a story in WIRED—noted, Price’s extraordinary feats of recollection were accompanied by a kind of obsessive-compulsive fixation on recording the details of her life, one that appeared to have taken root after a “traumatizing” move to LA when she was a girl. As an adult in her 40s, she still lived with her parents. And she buttressed her memory with cramped pages full of notes on everything that happened to her in any given day.

Which is all just to say: When it comes to people with highly unusual memories, it’s not clear that we as a culture are so good at choosing who to envy.

You might think that McKinnon would lean on technology to help compensate for her disorder. After all, she lives at a moment when software companies are churning out products that are, essentially, surrogates for the very faculties she lacks. Isn’t a Facebook feed a kind of prosthetic autobiographical memory? Google Photos will even form gauzy retrospective mental associations for you: The artificially intelligent software plunges straight into your photo library, plucks out faces and related events, and automatically generates poignant little videos—synthetic episodic memories. Other software tools aim to capture your entire life in documents—emails, calendar reminders, schoolwork, voicemails, texts, snapshots, videos, and other bits of recordable data—to provide a searchable database of your memories.

And yet the life-logging impulse is lost on McKinnon. Once, she decided to keep a journal to see if she could preserve her memories. “I stopped doing that after two or three days,” she says. “If I get so obsessed with capturing every moment because I’m afraid of losing the memory, I’m never going to experience those moments.” And what else, really, does she have?

She does use email, which sometimes serves as a useful reference. But she doesn’t make a special effort to log her experiences there. And she doesn’t use social media. No Pinterest. No Instagram. She had a Facebook account, but she quit using it. It didn’t interest her.

Even if she had a Facebook feed, she would have very little to put there in the way of photos or videos. McKinnon once borrowed a video camera to film one of their departures on a Caribbean cruise, but she didn’t enjoy it. She lost the feeling of the moment, she says. She likewise doesn’t take photos. She says she doesn’t find them that compelling to look at. Sure enough, I notice there are no pictures on the ­couple’s refrigerator, shelves, or walls. No framed wedding portraits. No posed beach shots. There are just a few photo albums in an upstairs office.

McKinnon pulls down the album of her 1981 courthouse wedding to Green in Maywood, Illinois. There’s a shot of the friends who surprised the newlyweds on the steps outside. There’s one of Green opening a gag gift—a set of four mugs with images of cats having sex. McKinnon is practiced at laughing through all the anecdotes about the day that she has memorized over the years, with help from the album. But looking at the pictures, she says, feels like observing somebody else’s wedding.

Today, though, she learns something new about the day she married Green. As we look over the album, Green mentions a close friend who attended the wedding. “I didn’t even know she was there,” McKinnon says. That’s because there are no photos of this friend. Because she was the one behind the camera.

This actually feels like the kind of error anyone could make: Doesn’t the person behind the camera often get edited out of recall? Even when the person behind the camera is you?

McKinnon is practiced at laughing through all the anecdotes about her wedding day that she has memorized over the years.

While it’s abundantly clear that McKinnon isn’t using technology to become more like us, it’s conceivable that technology could, over the long run, make us all a bit more like McKinnon. My iPhone now holds 1,217 photos and 159 videos just from the past eight months. By focusing on clicking picture after picture, I may actually be blurring away my memories of these experiences through something researchers call “the photo-taking impairment effect.” And by automatically storing all those photos in the cloud—which relieves my mind of the burden of cataloging a bunch of memories—I may be short-circuiting some part of my own process of episodic memory formation.

“What would humanity lose if they lost some of that ability?” McKinnon asks during one of our conversations, as if wondering aloud for me. “If they had technology to replace it, what would be lost? The human experience would change, but would it be a plus? Or a minus? Or—just a change?”

I can hear McKinnon sniffling. We’re sitting in a dark movie theater at Olympia’s Capital Mall, watching Inside Out. Out of the corner of my eye, I see that she’s crying. Most of the movie takes place in the mind of an 11-year-old girl named Riley. The girl’s emotions, represented as cartoon workers in a control room, are on an emergency mission to save her from psychological catastrophe: the loss of her core memories, which look like little glowing orbs with video loops playing across their surface. The core memories power her personality islands, which—well, it’s hard to describe, but suffice it to say the structures of Riley’s personality begin to crumble when her core memories go missing.

McKinnon loves the movie, despite the fact that it seems to present her daily reality as an utter catastrophe. (When we talk about the islands of personality, core memories, and the control room of Riley’s consciousness, McKinnon laughs. “If I have the islands,” she says, “I’m not sure there’s any connections to headquarters.”)

I’m surprised to find out that, even though she doesn’t experience her own life as a narrative, McKinnon loves stories. Especially fantasy and sci-fi: Game of Thrones, The Hunger Games. She’s read all the books, seen all the movies and episodes. She can’t remember what they were about, but that just makes it better. Each time she rereads or rewatches something, it’s like experiencing it for the first time. (Here’s another thing to envy about her: She is impervious to spoilers.)

But she cannot for the life of her make up a story. She does not daydream. Her mind does not wander. This lack of imagination is common among amnesiacs. Most of us can visualize a beach scene on command, for example: We can picture lounging on a chair with a piña colada in hand, roaring waves, grains of sand between our toes. When McKinnon tries this mental exercise, she can visualize a hammock, maybe. “And then there’s probably a palm tree. As soon as, in my mind, I’d try to grab that palm tree, I lose the hammock.” She cannot fit the images together into a finished puzzle. She also cannot play chess, even though her husband plays often. “I can’t hold in my mind more than one move ahead.” In other words, not only does McKinnon lack a window into the past, she also lacks a window into the future.

Related Stories

McKinnon and I did a lot that day. We ate, we spoke, we walked around the mall. But of course, she doesn’t remember the details, nor does she seem to mind. While most of us experience life as a story of gain and loss, McKinnon exists always and only in her own denouement. There is no inciting incident. No conflict. And no anxious sense of momentum toward the finale. She achieves effortlessly what some people spend years striving for: She lives entirely in the present.

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Fortune Favours the Brave Paperback – 13 Dec. 2018

by Michelle Marcella Clarke (Author), Prof John Crown MB (Foreword)


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Michelle Clarke takes us on an extraordinary journey, through challenges most of us would never know, were it not for her courage to write this story. In 1993, aged 32, she suffers a fractured skull in a horse-riding accident in Zimbabwe, an event which changes her life forever. The traumatic brain injury adds to her existing conditions of Bipolar, Anxiety and Chronic Fatigue. Her marriage fails and she returns to live in Ireland. In 2003, she meets KT at a bus stop in Dublin. He invites her for coffee, and they have been together ever since. The third member of their team is Freddie, a very special little rescue dog. In July 2017, the shocking diagnosis of breast cancer arrives via a routine mammogram and she enters the next phase of ill-health, but this time with the loving support of KT and Freddie. She records her journey through this cancer, primarily to help others, who are experiencing cancer, and their supportersand loved ones, but in doing so she also reaches out to all of us who care about the rare life story of a fellow human being.

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Dereliction in Ireland; vacant properties … census reveals 166,000. R/mend tweets @frank_oconnor @judesherry. They are now 2 years+ making people engage with derelict houses. Supply is there. Repair & Lease is an option for people who choose to rent out a house as a source of their pension, we all have the right to choose how to invest to ensure we are paid a pension when we retire. Repair & Lease is an option worth considering. Details below. This article links to Urban abandonments and dereliction; homeless, Royal City of Dublin also. Source: Citizens Information / Peter Mcerry Trust link below

You are here:Home>Housing>Housing grants and schemes> Repair and Leasing Scheme

Repair and Leasing Scheme

Introduction

The purpose of the Repair and Leasing Scheme is to bring vacant properties in need of repair, back into use for social housing. The scheme is aimed at owners of vacant properties who cannot afford the repairs needed to bring their property up to the standard required to rent it out.

However, under a pilot expansion of the scheme, property owners of certain categories of buildings do not have to meet the requirement of being unable to afford or unable to fund the repairs. This applies to the following categories of properties:

  • Vacant commercial units
  • Vacant units associated with a commercial unit, for example, a flat over a shop
  • Vacant institutional buildings
  • Unfinished developments, which have been vacant for a significant amount of time

If your vacant property is suitable for social housing, the cost of necessary repairs is paid up-front by the local authority or approved housing body (AHB). You then lease, or make the property available, to the local authority or AHB, who will use it for social housing. You will get an agreed rental payment from the local authority or AHB and the value of the repairs will be gradually offset against this rental payment over a specified period.

The Department of Housing, Local Government and Heritage has information about the scheme.

If you notice a vacant home in your area, you can report this to your local authority using the online form on vacanthomes.ie. The local authority will investigate and, if appropriate, work to bring the vacant home back into use.

Rules

What properties are suitable for the scheme?

Certain conditions must be met for a property to qualify for the scheme.

  • The property must have been vacant for at least 12 months before you apply to the Repair and Leasing Scheme. You will need to provide proof that it has been vacant for this time.
  • There must be a demand for social housing in the area.
  • The property must be assessed as being suitable to provide social housing .

Repairs

If the property meets these requirements, staff of the local authority or AHB will inspect it and provide you with a checklist of the repairs that are necessary to bring it up to the standard required. These requirements may vary in each local authority. But when the repairs are completed, all properties must:

All properties must be furnished and include certain appliances. There is more detail about this in the Department’s information on the scheme.

Arranging the repairs

You can arrange a contractor yourself to carry out the repairs. If you are not in a position to do this, the local authority or AHB can engage a contractor instead. You will need to give formal written permission to the local authority or AHB to arrange for works to be done on the property.

If you are arranging a contractor yourself, you must list out the works to be done and get a quote from the contractor. This must be agreed with the local authority or AHB before the work starts. The contractor must be tax-compliant and be able to provide evidence of this on request.

When the work is finished, you should get an invoice from the contractor and give it to the local authority or AHB, who will arrange a site visit to check that the work meets the required standard.

If all is in order, the local authority or AHB will pay you the agreed amount to settle the contractor’s invoice. You will need to provide a receipt from the contractor.

Direct lease arrangement or rental availability agreement

Under the Repair and Leasing Scheme you can agree to make your property available to the local authority or AHB for social housing through:

  • A direct lease arrangement, or
  • A rental availability agreement (RAA)

The main difference between the two options is that under a lease agreement the local authority or AHB is the landlord and looks after the tenant and the maintenance of the property. With an RAA the owner is the landlord and has these responsibilities.

The two options also have different maximum terms and rents available. Below see a table outlining the main differences between the options:

Direct lease agreementRental availability agreement (RAA)
Term5 – 25 years5 – 10 years
Rent80% of current open market rate less RLS offset for the repairs (85% for apartments with a significant service charge and 70% for properties under the pilot scheme)92% of current market rate less RLS offset for the repairs (95% for apartments with a significant service charge)
Cost savings• No rent loss due to vacant periods • No rent arrears • No letting fees • No advertising costs • No RTB tenancy registration charge • No day to day maintenance costs• No rent loss due to vacant periods • No rent arrears • No letting fees • No advertising costs
Tenant managementLocal authority or AHB is responsible and they are the landlordProperty owner is responsible and is the landlord
Property maintenanceLocal authority or AHB is responsibleProperty owner is responsible

To agree to either of these arrangements, you will have to prove that you own the property and that you are tax-compliant. You should consult with your finance or mortgage provider and get their consent before entering into the scheme (if applicable).

Agreeing a direct lease agreement

If you decide to lease your property directly to the local authority or AHB you will sign an Agreement to Lease. This indicates that you agree to the length of the lease, the market rent of the property and a schedule of the works required. You will also agree how the cost of the works will be recouped through the lease payments.

Agreeing a rental availability agreement

If you decide to make your property available using an RAA, you will sign an availability agreement with the local authority or AHB. This states that you have agreed to make your property available for a specific period, to people nominated by the local authority to be your tenants. And that you will maintain the property in a lettable condition.

Repaying the cost of repairs

The cost of the repairs will be offset against the agreed rental payment until the value of the works is repaid. The local authority or AHB will agree with you what the appropriate offset period will be in your case. The agreement will contain a clawback clause to ensure that the full value of the works will be repaid if the property becomes unavailable during the agreed period. Further information about the offset period and clawback clause is available in the Department’s information about the scheme.

Landlord and tenant arrangements

When the repairs are completed, your property will be offered to households who have been approved by the local authority for social housing. If you have agreed a direct lease for your property, tenants will sign a tenancy agreement with the local authority or AHB. The local authority or AHB (acting as the landlord) will manage the property and provide support to its tenants. These properties will not be available to tenants on the Housing Assistance Payment (HAP) or the Rental Accommodation Scheme (RAS).

If you have made an RAA with the local authority or AHB, the tenancy agreement is between you, (the property owner) and the nominated tenant. You are the landlord, and you have landlord’s rights and responsibilities.

Ongoing maintenance, repairs and other charges

Certain responsibilities apply whether you have agreed a direct lease or an RAA with the local authority or AHB. As the owner, you remain responsible for structural insurance, structural maintenance and structural repair. You are also responsible for paying management company service charges, if applicable, and any other charges for which you are liable, such as Local Property Tax.

If you have agreed a lease agreement the local authority or AHB is responsible for internal maintenance and repairs during the term of the lease. And at the end of the term, the property will be returned to you in good repair, except for fair wear and tear.

However, in the case of an RAA agreement, you will manage and support the tenants and maintain the property internally for the term of the agreement.

Selling the property

You can sell the property during the term of a direct lease agreement as long as you transfer the lease agreement to the new owner and notify the local authority or AHB in advance.

In some cases, the property owner may agree with the local authority or AHB to include an ‘option to purchase’ as a condition of the lease. This gives the local authority or AHB the option to buy the property during the term of the lease. Such a condition can only be included if both parties agree.

Rates

The maximum repair cost under the scheme is €60,000 including VAT. This can include the cost of required furniture, as agreed with the local authority or AHB.

The cost of the repairs will be offset against the agreed rental payment until the value of the works is repaid. The local authority or AHB will agree with you what the appropriate offset period will be in your case.

The amount paid to you will be agreed through negotiation with the local authority or AHB. The maximum to be agreed will be a percentage of the current market rent.

  • For most direct leases this is 80% of the current market rent. However, it is 85% for apartments with a significant service charge and 70% for properties under the pilot scheme.
  • For RAA’s it is 92% of the current market rent or 95% for apartments with a significant service charge.

Rent reviews will usually take place every 3 or 4 years.

Where to apply

If you are interested in the Repair and Leasing Scheme, you should contact your local authority for more information.

Page edited: 21 July 2022

Recommend Peter McVerry Trust

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Traumatic brain injury: Researchers in neuroscience Ireland need to be researching this. “Virtual scaffolding” describes so much says a person who has 30+ years experience of TBI. Learn a little more about “Silent Epidemic” of brain injury

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Poignant. Mental illness remains with us. People may no longer be in institutional care but we must not forget in Ireland, our history and the fact that our psychiatric services are brutally underfunded, under staffed. Too many of our homeless and people in prison are lost sight of. We all know, if we choose to, where the psychiatric services are failing another human being.

The Guardian – Back to homeThe Guardian: news website of the year

New Zealand

The paddock that became a grave for the people New Zealand branded ‘defective’ – and chose to forget

Illustration of a wooden cross standing alone in a paddock with trees and hills in background
The New Zealand royal commission into abuse in care heard that hundreds of patients of Tokanui psychiatric hospital were buried in unmarked graves in a paddock. Illustration: Avinash Weerasekera

Nearly 500 patients consigned to the Tokanui psychiatric hospital died there, their only legacy a memorial wall in a field

Tess McClure in Waikato Fri 29 Jul 2022 20.00 BST

It was, remembers Caroline Arrell, just another paddock. Grazed by sheep under the wide Waikato sky, it gave no hint of its past – except perhaps that her labrador, Lucy, had an odd aversion to it. The dog would veer away from it, skirting the fence line.

But out riding her horse, Alice, on a quiet Sunday in early 1991, Arrell was about to discover a grave on the 200-hectare farm she called home. Beneath the feet of the sheep, under the grass and soil, nearly 500 people lay buried.

“I jumped Alice over the fence into this paddock and she tripped and fell, her rear foreleg disappeared down a hole,” she says. “I tumbled off. We were both OK, except I tumbled against a hard piece of rock – or so I thought. It was a metal plaque.”

Black and white image of Tokanui hospital photographed from the air in 1963
An aerial view of Tokanui hospital in 1963. Photograph: National Library of New Zealand

Arrell pulled the plaque from the overgrown grass. It identified the resting place of a single woman – the only marker in the paddock. In reality, hundreds of others lay beneath the grass, their graves unmarked.

‘They were human beings, for God’s sake’

The graves were dug to receive patients who died at Tokanui hospital, a state-run institution that housed New Zealanders with intellectual disabilities or mental illness.

While the last burials at the graveyard were recorded in the mid-60s, the institution remained open until the late 1990s, with much of its surrounding grounds – including the gravesite – converted into farmland. Like its graveyard, the institution slipped mostly out of public memory after it was shut down in 1998. Now, New Zealand is in the midst of a royal commission of inquiry into claims of abuse and neglect of those cared for by the state.

Arrell, who worked at Tokanui as well as living at the farm, was one of those who shared their memories.

Today, Tokanui’s dead lie at the centre of a dairy farm run by Agresearch, a crown research institute. To find the graveyard, you trudge up the chewed-up mud of a track, past the gaze of a cluster of bobby calves. The graves have been fenced off, to stop stock wandering in. A wreath of purple flowers has blown into the next paddock, and lies half concealed by grass. At the field’s centre is a small wooden cross, crusted with lichen, leaning a little crookedly in the wind.

Maurice Zinsli came across the graveyard while researching his family tree. His great-aunt, Maria, had been committed to Tokanui at age 23, while grieving the sudden death of her fiance. She remained there until her death almost 40 years later. Zinsli had looked up where she was buried, and discovered it was nearby – in a cemetery he hadn’t heard of before. “I said oh – that’s just down the bloody road from me, I’ll go down and have a look.”

He was appalled by what he found. “It was a farm paddock – that’s all it was, that’s all you could say. The cattle were in there, the sheep were in there … It was an absolute disgrace,” he says. He began a decade-long campaign for recognition and a proper memorial for the people buried there. On the hill there now stands a memorial wall, etched with the 467 names of those Zinsli and genealogist Anna Purgar have spent almost a decade tracking down.

Cows on a muddy track in front of the grassy hills of the paddock grave
‘To find the graveyard, you trudge up the chewed-up mud of a track.’ Photograph: Tess McClure/The Guardian

Purgar also has an extended family member buried there, and says she’s saddened that no one took responsibility after the institution closed.

“It’s quite sad really, if you see it, it’s quite emotional. You sort of stand there, and turn around and see all these people’s names. And you turn back again and think well, they’re in this paddock.”

Zinsli says: “I couldn’t see why all these people that were buried there never got any recognition. I mean, they were human beings for God’s sake.”

The forgotten graveyard strikes him as symbolic of a wider societal forgetting. “If you went into a mental home, no matter what you went in for, a stigma got attached – and then nobody wants to know about it.”

‘Tokanui ruined my life’

New Zealand is in the process of excavating the experiences and memories of those who lived through its institutions, in an effort to understand how the country allowed abuse or neglect to occur, and to ensure it is not repeated.

The royal commission, which will deliver its final report in June next year, was established in 2018 and has been taking evidence since 2019. Over the past month, it conducted hearings on abuse in state psychiatric and disability care facilities, adding to thousands of hours of testimony from ex-staff, patients and family members.

An ex-resident of Tokanui, Peter Keoghan, was sent to the hospital when he was five years old, and remained there for 20 years. Keoghan told the tribunal he experienced physical abuse from staff members and sexual abuse from other patients.

“Tokanui ruined my life and it has affected me every day. It was not a nice place. The memories made me feel angry,” he said. “When I got out, I said ‘I’m free I’m free! I’m free!’ No one would kick me in the stomach or grab me around the neck.”

One witness to the tribunal – identified as Mr EY – testified about the loss of his 12-year-old brother, Jimmy, who was sent to Tokanui after being diagnosed with “imbecility” and difficulty walking. The family visited Jimmy just once after his admission. In a little over a year, EY alleged he had transformed – he was severely overweight, heavily medicated, non-verbal and confined to a wheelchair. Attempting to lift him up, EY discovered he was bleeding from severe bed sores.

The shadow of a young girl or boy playing on a swingA95CDB The shadow of a young girl or boy playing on a swing

“He couldn’t acknowledge us. He couldn’t even say anything. He was sitting there in a state of obvious anguish, in physical and mental pain,” EY testified. Jimmy died shortly afterwards, and was buried in an unmarked grave.

“I believe Jimmy died unnecessarily. His mana [pride and dignity] needs to be restored but I feel that this cannot happen until his resting place is marked,” EY said. “My brother died in care. Jimmy didn’t have a voice to express his pain and suffering. So, I must carry his voice from beyond the grave to ensure justice.”

‘What was going on for that to be able to happen?’

Tokanui was built in 1912, when eugenics ideas were mainstream in New Zealand. A year earlier, the country had signed its “Mental Defectives Act”, allowing for the detention and segregation of people considered “mentally deficient”. The New Zealand Nurse’s journal celebrated the bill’s passing, saying it would help with “stemming the tide of race deterioration”.

The idea developed “that it would be better to corral people with so-called ‘mental defects’ and take them away from wider society,” says University of Newcastle Prof Catharine Coleborne, who studied the history of Tokanui and other institutions like it. “A sense of protecting people from wider society, but also protecting wider society from them.”

At the field’s centre is a small wooden cross, crusted with lichen, leaning a little crookedly in the wind.
‘At the field’s centre is a small wooden cross, crusted with lichen, leaning a little crookedly in the wind.’ Photograph: Tess McClure/The Guardian

“These kinds of institutions may become worlds unto their own,” says Coleborne – and their legacy is not black and white. “Institutions are complex places. They could be places where people found respite and asylum in the real sense of the word, and purpose. But they needed to have support from the outside world.”

She says that beyond the institutions themselves, there is a wider question for New Zealand, around how it chose to care for those with disability, mental health, and others who needed assistance.

“I would hate for institutions to receive all of the blame, because I think what was going on more broadly was a culture of silence around people who didn’t fit into a productive economy,” she says. “There’s a bigger question we have here … what was going on in wider society for that to be able to happen?”

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UN Convention on the Rights of Persons with Disabilities (UNCRPD” (Inclusion Ireland – The National Association for people with Intellectual Disability)

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UN Convention on the Rights of Persons with Disabilities

Respect Our Rights Report

Respect our Rights Report was launched at Inclusion Ireland’s AGM on 15th December 2021. It is the result of the work of a project led by self advocates in response to the work the state is doing on UNCRPD. You can read the report here

We also have video’s on the 7 different topics used in consultations for the report.

You can also watch a video from advocate Robert Martin which was also used in the final consultation  Robert Martin Video

Below you will find videos about the report itself and the process for the project

Presentation of the report

Presentation of the project process

As part of this project, our self advocates took part in events at the United Nations

You will see links to their speeches below

  1. Paul on barriers to employment, 22nd of March
  2. Tomas on good practices related to employment, 24th of March
  3. Margaret on participation of people with disabilities during covid19, 14th of September

Well done to everyone involved in the project for all their great work.

You will also find more information on UNCRPD on this page if you keep scrolling down.

UN Convention on the Rights of Persons with Disabilities

The United Nations Convention on Rights of Persons with Disabilities (UNCRPD) says that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.

The UNCRPD requires change, from viewing people with disabilities as receivers of charity, medical treatment, and social protection to viewing people with disabilities as

  • people with rights, who are capable of claiming those rights,
  • people who are capable of making decisions for their lives based on their free and informed consent and
  • people who are capable of being active members of society.

The UNCRPD identifies 26 important rights that impact the lives of persons with disabilities. The Convention on the Rights of Persons with Disabilities was adopted in 2006 at the United Nations Headquarters in New York and came into force in 2008.

Our mission is to champion the rights of people with an intellectual disability in Ireland through securing the full implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

What are the rights of persons with disabilities?

  • Equality and non-discrimination – The right to enjoy equal protection and benefit of the law (article 5)
  • Women with disabilities – The right of women with disabilities to full and equal enjoyment of all human rights and fundamental freedoms (article 6)
  • Children with disabilities – Children with disabilities enjoy all human rights and fundamental freedoms on an equal basis with other children (article 7)
  • Awareness-raising – A commitment by the state to raising awareness, to encourage respect for the rights and dignity of the person, to combat stereotypes and to promote awareness of the capabilities and contributions of persons with disabilities (article 8)
  • Accessibility – So that people with disabilities can live independently and participate fully in all aspects of life. Accessible – Buildings – Roads – Transport – Schools – Hospitals – Workplaces – Businesses – Services – Public spaces – Information – Communication systems -Technology (article 9)
  • Right to life – “Every human being has the inherent right to life, and we shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.” (article 10)
  • Situations of risk and humanitarian emergencies – In times of risk, conflict, emergency or natural disaster, all necessary measures are taken to ensure the protection and safety of persons with disabilities. (article 11)
  • Equal recognition before the law – A right to recognition as persons before the law, to enjoy legal capacity on an equal basis with others, to own property and to control their financial affairs, with safeguards to prevent abuse (article 12)
  • Access to justice – A right to effective access to justice for persons with disabilities on an equal basis with others with appropriate accommodations in all legal proceedings and training for those working in the field of administration of justice (article 13)
  • Liberty and security of the person – The right to liberty and security on an equal basis with others – “The existence of a disability shall not justify a deprivation of liberty.” (article 14)
  • Freedom from torture or cruel, inhuman, or degrading treatment or punishment – No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. This is a right for persons with disabilities on an equal basis with others. (article 15)
  • Freedom from exploitation, violence and abuse – Persons with disabilities, both within and outside the home, shall be protected from all forms of exploitation, violence and abuse. Protection includes providing information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. All services to persons with disabilities are effectively monitored by independent authorities. (article 16)
  • Protecting the integrity of the person – A right to respect for his or her physical and mental integrity on an equal basis with others (article 17)
  • Liberty of movement and nationality – The right to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others (article 18)
  • Living independently and being included in the community – The right to live in the community, be included and participate in the community, the opportunity to choose their place of residence and where and with whom they live, with support and responsive community services (article 19)
  • Personal mobility – Ensuring personal mobility with the greatest possible independence for persons with disabilities, in the manner and at the time of their choice and at affordable cost (article 20)
  • Freedom of expression and opinion, and access to information – The right to freedom of expression and opinion, including the freedom to look for, receive and pass on information and ideas. (article 21)
  • Respect for privacy – The right to the protection of the law against arbitrary or unlawful interference with his or her privacy, family, or communication or to unlawful attacks on his or her honour and reputation. (article 22)
  • Respect for home and the family – On an equal basis with others, the right to marry and found a family, decide freely and responsibly on the number and spacing of their children and access to reproductive and family planning education and to retain their fertility
    Respect for home and family also includes the right to services and support to prevent concealment, abandonment, neglect, and segregation of children with disabilities. A child shall not be separated from parents on the basis of a disability of either the child or one or both of the parents. (article 23)
  • Education – The right of persons with disabilities to education without discrimination and on the basis of equal opportunity and the right to an inclusive education system at all levels, in the communities in which they live, and lifelong learning (article 24)
  • Health – We recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. We shall:
    Provide the same range, quality, and standard of free or affordable health care and programmes as provided to other persons
    Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention and services designed to minimize and prevent further disabilities, all as close as possible to people’s own communities
    Provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent.
    Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance and prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.(article 25)
  • Habilitation and rehabilitation – The right to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life through comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services. (article 26)
  • Work and employment – Recognition of the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and a work environment that is open, inclusive and accessible to persons with disabilities. We shall:
    Have effective access to general technical and vocational guidance programmes, placement services, vocational and continuing training.
    Ensure that reasonable accommodation is provided to persons with disabilities in the workplace
    Ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour (article 27)
  • Adequate standard of living and social protection – the right to an adequate standard of living for themselves and their families, including adequate food, clothing, and housing, and to the continuous improvement of living conditions The right to social protection without discrimination on the basis of disability
    Equal access to clean water services, appropriate and affordable services, devices and other assistance for disability-related needs, social protection programmes and poverty reduction programmes, public housing programmes and retirement benefits and programmes
    For persons with disabilities and their families living in situations of poverty we must ensure access to assistance from the State with disability-related expenses, adequate training, counselling, financial assistance, and respite care. (article 28)
  • Participation in political and public life – A guarantee of political rights and the opportunity to enjoy on an equal basis with others. This includes the right and opportunity for persons with disabilities to vote and be elected and the right to participate in non-governmental organizations and associations and political parties. (article 29)
  • Participation in cultural life, recreation, leisure and sport – The right of persons with disabilities to take part on an equal basis with others in cultural life including access to cultural materials (TV, theatre etc.), participation to the fullest extent possible in mainstream sporting activities at all levels and an opportunity to organize, develop and participate in disability-specific sporting and recreational activities. (article 30)
  • More Information
    Inclusion Ireland UNCRPD Leaflet

For the full UNCRPD and more information visit the UNCRPD webpage

UNCRPD Human Rights Project for Transition Year

To raise awareness of the United Nations Convention on the Rights of Persons with Disabilities we have developed a poster display with activity sheets for students.

The project introduces the topic of the UNCRPD and encourages discussion and understanding. Students learn that human rights belong to everybody, that children and adults with disability should enjoy the same rights as everyone else and that we should never have to choose between human rights.

The completed work is signed off by the supervising teacher or group leader. A certificate of completion will be awarded to each student.

To take part or for more information about this project please contact Inclusion Ireland at info@Inclusionireland.ie

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Deep understanding because she has had lifelong Aphantasia and SDAM. You can’t rely on your mind’s eye. You can’t imagine go forward; it is a world of living in the now. Aphantasia named by Professor Adam Zeman in 2016. Traumatic Brain injury can bestow this on you and it is a trauma also because you know the alternative of being able to imagine, describe etc.

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Stroke or TBI: Aphasia can be part of the silence of the epidemic. Please share because it can take decades to understand about Brocas and Aphasia. “Psychology Today reported on the study being conducted in partnership between IBM Research and Pfizer. Researchers are using linguistics (the study of language) “as a marker for early detection of Alzheimer’s disease.”

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New Research for Alzheimer’s Disease Uses a Common Aphasia Test

A test commonly used to diagnose aphasia is helping researchers detect early signs of Alzheimer’s disease. While their findings have no impact on aphasia caused by a stroke or traumatic brain injury, the research could be of interest to people diagnosed with primary progressive aphasia (PPA). Alzheimer’s disease is not PPA, and in the past, we’ve outline the differences. But both are neurological diseases that include the deterioration of brain tissue.

How an Aphasia Test Played a Role

Psychology Today reported on the study being conducted in partnership between IBM Research and Pfizer. Researchers are using linguistics (the study of language) “as a marker for early detection of Alzheimer’s disease.”

To train the machines to detect those language changes, the researchers used data collected from the Framingham Heart Study, which included the use of the Boston Aphasia Diagnostic Examination—”a widely used cognitive test used to assess aphasia, a disorder that impairs speech and communication abilities, and increasingly for dementia as well.”

Researchers culled out a group of 80 from the study, looking at 40 individuals who went on to develop Alzheimer’s disease and 40 who did not, though all were cognitively normal during the data collection period. Differences in linguistic activity helped the researchers to train the machine to detect certain markers.

Amazing Results

The researchers found that “the machine learning model could predict Alzheimer’s disease with 70 percent accuracy when using linguistic variables.”

Moreover, “scientists have opened the door to the possibility of non-invasive, easy-to-administer diagnostic tests based on linguistics for early detection of Alzheimer’s disease in the future.”

At this stage, we don’t yet have information on whether this algorithm could also predict or diagnose PPA, or whether the research could be applied to other neurodegenerative disorders in a future study.

Related Posts

Aphasia Threads: Kitti, Regina, and CourtneyAffiliate Highlight: Neuro Speech ServicesAphasia Threads: Bruce, Lynda, and JohnThis For Those Who Had a Stroke…. A Poem by ArchanaWhat Is Wernicke’s Aphasia?

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Why Can’t You Remember the First Years of Your Life? What Scientists Know About ‘Infantile Amnesia’. Source: SingularityHub.

early memory infantile amnesia toddler smiling red background

Why Can’t You Remember the First Years of Your Life? What Scientists Know About ‘Infantile Amnesia’

By

 Vanessa LoBue

 

July 24, 2022

Whenever I teach about memory in my child development class at Rutgers University, I open by asking my students to recall their very first memories. Some students talk about their first day of pre-K; others talk about a time when they got hurt or upset; some cite the day their younger sibling was born.

Despite vast differences in the details, these memories do have a couple of things in common: They’re all autobiographical, or memories of significant experiences in a person’s life, and they typically didn’t happen before the age of two or three. In fact, most people can’t remember events from the first few years of their lives—a phenomenon researchers have dubbed infantile amnesia. But why can’t we remember the things that happened to us when we were infants? Does memory start to work only at a certain age?

Here’s what researchers know about babies and memory.

Infants Can Form Memories

Despite the fact that people can’t remember much before the age of 2 or 3, research suggests that infants can form memories—just not the kinds of memories you tell about yourself. Within the first few days of life, infants can recall their own mother’s face and distinguish it from the face of a stranger. A few months later, infants can demonstrate that they remember lots of familiar faces by smiling most at the ones they see most often.

In fact, there are lots of different kinds of memories besides those that are autobiographical. There are semantic memories, or memories of facts, like the names for different varieties of apples, or the capital of your home state. There are also procedural memories, or memories for how to perform an action, like opening your front door or driving a car.

Research from psychologist Carolyn Rovee-Collier’s lab in the 1980s and 1990s famously showed that infants can form some of these other kinds of memories from an early age. Of course, infants can’t exactly tell you what they remember. So the key to Rovee-Collier’s research was devising a task that was sensitive to babies’ rapidly changing bodies and abilities in order to assess their memories over a long period.

In the version for 2- to 6-month-old infants, researchers place an infant in a crib with a mobile hanging overhead. They measure how much the baby kicks to get an idea of their natural propensity to move their legs. Next, they tie a string from the baby’s leg to the end of the mobile, so that whenever the baby kicks, the mobile moves. As you might imagine, infants quickly learn that they’re in control—they like seeing the mobile move and so they kick more than before the string was attached to their leg, showing they’ve learned that kicking makes the mobile move.

The version for 6- to 18-month-old infants is similar. But instead of lying in a crib—which this age group just won’t do for very long—the infant sits on their parent’s lap with their hands on a lever that will eventually make a train move around a track. At first, the lever doesn’t work, and the experimenters measure how much a baby naturally presses down. Next, they turn the lever on. Now every time the infant presses on it, the train will move around its track. Infants again learn the game quickly and press on the lever significantly more when it makes the train move.

What does this have to do with memory? The cleverest part of this research is that after training infants on one of these tasks for a couple of days, Rovee-Collier later tested whether they remembered it. When infants came back into the lab, researchers simply showed them the mobile or train and measured if they still kicked and pressed the lever.

Using this method, Rovee-Collier and colleagues found that at six months, if infants are trained for one minute, they can remember an event a day later. The older infants were, the longer they remembered. She also found that you can get infants to remember events for longer by training them for longer periods of time, and by giving them reminders—for example, by showing them the mobile moving very briefly on its own.

Why Not Autobiographical Memories?

If infants can form memories in their first few months, why don’t people remember things from that earliest stage of life? It still isn’t clear whether people experience infantile amnesia because we can’t form autobiographical memories, or whether we just have no way to retrieve them. No one knows for sure what’s going on, but scientists have a few guesses.

One is that autobiographical memories require you to have some sense of self. You need to be able to think about your behavior with respect to how it relates to others. Researchers have tested this ability in the past using a mirror recognition task called the rouge test. It involves marking a baby’s nose with a spot of red lipstick or blush—or “rouge” as they said in the 1970s when the task was created.

Then researchers place the infant in front of a mirror. Infants younger than 18 months just smile at the cute baby in the reflection, not showing any evidence that they recognize themselves or the red mark on their face. Between 18 and 24 months, toddlers touch their own nose, even looking embarrassed, suggesting that they connect the red dot in the mirror with their own face—they have some sense of self.

Another possible explanation for infantile amnesia is that because infants don’t have language until later in the second year of life, they can’t form narratives about their own lives that they can later recall.

Finally, the hippocampus, which is the region of the brain that’s largely responsible for memory, isn’t fully developed in the infancy period.

Scientists will continue to investigate how each of these factors might contribute to why you can’t remember much, if anything, about your life before the age of two.

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Image Credit: Humphrey Muleba / Unsplash 

VANESSA LOBUE

Dr. LoBue is interested in the development of infants and young children in multiple domains, including emotional, cognitive, and perceptual. She received her B.S. at Carnegie Mellon University where she worked as an undergraduate research assistant in an infant cognition lab. From there, she went on to earn her M.A. and Ph.D. in developmental psychology at the University of Virginia, and the…

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