“Ironic, isn’t it, that we can buy 50 different types of pasta or ice cream? We can choose a million styles of hair, or clothes, holiday destination or car. Tidal waves of consumer choice lap against us every waking minute. Yet when we need help to effect a simple, primary decision to ease out of life; when we want to avoid becoming a living shell, stuck in bed, in pain, staring at the wall for months on end, and thereby condemning our relatives to a similar suffering, we are denied that choice.” – Melanie Reid, journalist, severely disabled as a result of falling off a horse
As gleaned from the book, NeuroTribes:
In the book, Science and Human Behaviour (1951), B. F. Skinner cautioned on the use of aversive. He explained that while aversive may seem to stop undesirable behaviour quickly, the behaviour often returns with a vengeance after the punishment stops, because one has not been taught more adaptive ways to behave. Also, punishment creates fear, guilt and shame, resulting in less learning overall.
Skinner also advised against the use of aversive in research. He propounded, “In the long run, punishment, unlike reinforcement, works to the disadvantage of both the punished organism and the punishing agency.”
O. I. Lovaas disregarded the advice when working with Beth, an autistic child. He punished her for a range of behaviour that included hand flapping, rocking, spinning and other forms of self-stimulation. Based on his own experiments, he concluded that stimming made autistic children less sensitive to sounds, which hindered learning. He also believed that extinguishing this “garbage behaviour” would reduce a major source of stigma for autistic people and their families.
Eventually, researchers would discover that autistic people stim to reduce anxiety – and also simply because it feels good. In fact, harmless forms of self-stimulation may facilitate learning by freeing up executive-functioning resources in the brain that would otherwise be devoted to suppressing them.
[This reinforces my previous post on the importance of skepticism towards authority.]
After Lovaas’ work with Beth, he conducted a series of experiments with a pair of five year old twin boys named Mike and Marty.
For one of his first rounds of experiments, his punishment was exceptionally loud sound. He aimed blasts of “well over 100” decibels at them – comparable to the roaring of a power saw at close range. His aim was to produce “pain or fear” so that they may learn to seek safety in adults. The results were disappointing as the twins did not respond to the punishment that could have caused physical damage to the eardrum.
Hence, Lovaas turned to electric shock. He argued, “It is important to note, in view of the moral and ethical reasons which might preclude the use of electric shock, that their future was certain institutionalisation.”
He taped strips of metal foil to the floor and wired them to a modified Faraday coil. When the grad students tested the aversive barefooted, they remarked that it was “definitely painful and frightening”.
In a typical round of trials, a researcher would say “Come here,” beckoning to the boy with outstretched arms. If he didn’t approach within three seconds, he would get a shock. The same procedure was repeated over and over again, for hundreds of trials. In just a few sessions, the twins learned to jump into the researchers’ arms to avoid the painful shocks. Lovaas deemed these experiments a stunning success.
In a subsequent round of trials, instead of the electrified floor, he employed a remote-controlled device (used in canine obedience tests) affixed to the boys’ buttocks. A researcher would ask either twin to “hug me” or “kiss me” and apply shock if the boy didn’t do so in three seconds. Lovaas noted that their behaviour “changed markedly toward increased affection.”
Next, Lovaas subjected the twins to strict behaviourist diet: no food at all, seven days a week, but the token scraps earned by performing a complex social task while pressing a bar to avoid shock. Water deprivation was also stringently enforced.
In order to legitimise his unorthodox techniques, he invited members of the press down to the lab to watch him in action. Before his demonstration, he showed them footage of children who had attempted to chew through their own limbs or bite off their nails with their teeth. His message was clear: This is what autism looks like if it is left untreated.
Even journalists who might normally be troubled by the use of electric shock, were persuaded by his solemn pronouncements that “No one punishes who isn’t prepared to devote a major part of his life to that child. Nobody punishes a child who doesn’t also love that child.” One reporter was so impressed that he dubbed Lovaas a visionary – a “poet with a cattle prod”.
Life magazine brought Lovaas to international fame with a profile that ran under the headline “Screams, Slaps, and Love.” It praised his work as “a surprising, shocking treatment that helps far-gone mental cripples” and the article shaped public perceptions of autism for decades to come.
It is clear to our conscience that the above punishments amount to abuse. It is appalling that many doctors, researchers, students, journalists and parents deemed these methods as acceptable. Hence, it is important to gain more information across sources and regard loud voices – of authority, of media – with circumspect. Also, one needs to form one’s own moral and ethical judgment by reading more.
Furthermore, the use of electric shock tools is not just a question of “Is this ethical when used on a child deemed mentally handicapped?”; it is also a question of “Is this ethical at all?” The response of the child mimicked that of an animal: I would do anything to avoid pain. What makes it unacceptable in the former and acceptable in the latter?
This world is a growing pool of
humans: labels and numbers. The increasing use of technology allows data analysts to put us like points on the map, record our behaviour and for what purpose? The predominant answer is profit.
It was and is still true to say that ‘money makes the world go round’. Data analysts use our charted behaviour to find our trend of spending, and sell this data to corporations that can afford it. These corporations then work in stealth to influence and coax our spending. Of course, governments use big data, to monitor and supervise our behaviour, and rules change without us really understanding why.
One must question if anomalies pop up on these charts. If yes, then are these the ones who are left out, marginalised and vulnerable in our society? Then do we do anything with this data, to help them? If anomalies do not show, then are we excluding people from our view, our consideration and our humanity?
In the book, Awakenings, late Dr Oliver Sacks propounds the folly of medicine to reduce complex human experience to data, and warns of our reduction of humanism:
“The whole of this book is concerned with these questions – ‘How are you?’. ‘How are things?’ – as they apply to certain patients in an extraordinary situation. There are many legitimate answers to this question: ‘Fine!’, ‘So-so’, ‘Terrible!’, ‘Bearing up’, ‘Not myself’, etc.; evocative gestures; or simply showing how one is […] All of these are intuitively understood, and picture for one the state of the patient. But it is not legitimate to answer this metaphysical question with a list of ‘data’ or measurements regarding one’s vital signs, blood chemistry, urinalysis, etc. A thousand such data don’t begin to answer the essential question; they are irrelevant and, additionally, very crude in comparison with the delicacy of one’s sense and intuitions.
[…] Folly enters when we try to ‘reduce’ metaphysical terms and matters to mechanical ones: worlds to systems, particulars to categories, impressions to analyses, and realities to abstractions. This is the madness of the last three centuries, the madness which so many of us – as individuals – go through, and by which all of us are tempted. It is this Newtonian-Lockean-Cartesian view […] which reduces men to machines, automata, puppets, dolls, blank tablets, formulae, ciphers, systems and reflexes. It is this, in particular, which has rendered so much of our recent and current medical literature unfruitful, unreadable, inhuman and unreal.
There is nothing alive which is not individual: our health is ours; our diseases are ours; our reactions are ours – no less than our minds or our faces. Out health, diseases and reactions cannot be understood in vitro, in themselves; they can only be understood with reference to us, as expressions of our nature, our living, our being-here (da-sein) in the world.”
Hence with our increasing reliance on technology, we must not forget the importance of paying attention to human experience. We must view with circumspect, our progression towards non-humanism, towards exclusion of people in need.
Why do we rely upon authority – as if their words are absolute truths – when history has proven that theorists can be gravely mistaken? Arguably, we should rely on the quality of argument (and evidence) rather than the mouth from which it is uttered.
Below, we look at how the concept of autism developed (as gleaned from NeuroTribes):
In the 1940s, Leo Kanner and Hans Asperger expounded on autism, at about the same. However, their concept, attitude and perception were dissimilar.
Kanner focused only on the first years of childhood. Adults and teenagers were not considered. Instead of presenting his syndrome as a broad spectrum with widely varying manifestations, Kanner framed his patients as a strictly defined and monolithic group.
On the other hand, Asperger defined autism as a broad and inclusive spectrum that was “not at all rare”.
Asperger saw threads of genius of disability inextricably intertwined in his patients’ family histories – testifying to the complex genetic roots of their condition and the “social value of this personality type”.
In contrast, Kanner saw the shadow of the sinister figure that would become infamous in popular culture as the “refrigerator mother.”
Asperger recognised his patients’ behaviour as a specialised form of intelligence systematically acquiring data in a confusing world.
In contrast, Kanner interpreted his patients’ behaviour to be the result of poor parental treatment. These patients’ unusual fascinations and extraordinary memories were to him, a desperate bid for parental affection. He theorised that overambitious parents had “stuffed” the impressionable minds with useless information to bolster their own egos.
He would conclude “For the most part, the parents, grandparents and collaterals are persons strongly preoccupied with abstractions of a scientific, literary or artistic nature, and limited in genuine interest in people. This much is certain… In the whole group, there are very few really warmhearted fathers and mothers. Even some of the happiest marriages are rather cold and formal affairs.”
While emphasising the likelihood that autism was innate and inborn, he too suggested that these children had been pushed into mental illness by their selfish, compulsive and emotionally frosty parents. This made his syndrome a source of shame and stigma for families worldwide while sending autism research off in the wrong direction for decades.
It is likely that his perception was influenced by the concept of the “schizophrenogenic mother” This concept bloomed amidst cultural anxieties in the post World War I era, when women who had been previously subservient and self-effacing began cutting their hair short, smoking cigarettes, demanding the right to vote, and taking jobs in fields like education that had been formerly reserved for men, replacing them as primary breadwinners in many families. Hence, the insecurity with regards to changing women evolved into the “refrigerator mother”.
Time is not immutable. Our experience of time – our perception of hours and minutes – follows a largely regulated and cohesive system. Hence, we’re able to organise our lives and let late-comers pay.
There’re two instances whereby we lose sense of time.
Firstly, when one is deprived of his/her senses. In the mid-20th century, scientists carried out extensive sensory deprivation experiments which reduced what their subjects could hear, see and touch. Due to the deprivation of senses, the restless minds eventually conjured hallucinations and subjects began to lose emotional stability and suffered deterioration of mental function.
In 1993, Maurizio Montalbini, a sociologist, spent 366 days in an underground cavern to simulate space mission. When he emerged, he thought he had only passed 219 days as his sleep-wake cycles have almost doubled. In 2008, the BBC aired “Total Isolation” which depicted the experience of six individuals under 48 hours of partial sensory deprivation. Two individuals who have been placed in complete darkness lost their sense of time in less than 24 hours. In Mind Field: Isolation, host Michael Stevens subjected himself to 72 hours of isolation in a sound-proof, fully-lit room. In less than 8 hours, after a nap, he perceived it be about 9am when it was in fact only about 5am.
The above shows how important environment is for accurate perception of time. Once our senses are warped, time moves out of alignment.
Secondly, when one suffers from physiological damage. In Awakenings, late Dr Oliver Sacks recounted on Mr. V who seemed to be stuck in frozen “poses”. In the morning, he would observe Mr. V standing against the door, with his right hand apparently motionless a few inches from his knee. Later, in the middle of the day, his hand would be “frozen” halfway to his nose. Then, a few hours later, his hand would be “frozen” on his glasses or on his nose.
After Mr. V was awakened and accelerated by L-Dopa, Dr. Sacks mentioned the above observations and Mr V. responded:
Mr. V: “What do you mean, “frozen poses”? I was merely wiping my nose!”
Dr. Sacks: “But Miron, this just isn’t possible. Are you telling me that what I saw as frozen poses was your hand in transit to your nose?”
Mr. V: “Of course. What else would they be?”
Dr. Sacks: “But Miron, these poses were many hours apart. Do you mean to tell me that you were taking six hours to wipe your nose?”
Mr. V: “It sounds crazy and scary too. To me they were just normal movements, they took a second. You want to tell me I was taking hours instead of seconds to wipe my nose?”
The above experience shows how our perception of time can be incredibly different if our brain suffers damage from illness.
Henceforth we shall consider “time” in a wider scope, beyond Back to the Future or The Time Machine.
Encephalitis, also known as acquired brain injury, is an inflammation of the brain. Most of the types of encephalitis are caused by viral infection.
Between 1915 and 1926, an epidemic of encephalitis lethargica spread throughout the world, affecting five million people, a third of whom died in acute stages. Those who survived were conscious but not fully awake – sitting motionless and speechless all day, lacking motivation to do anything.
In the spring and summer of 1969, the late Dr Oliver Sacks began to use the drug, L-Dopa at Mount Carmel – a total palliative care centre. This sparked the “awakening” of fifty individuals. They emerged from their decades-long isolation and find themselves back in the world. They all began to dance and talk together, and delighted in each other’s daily-increasing health and vitality. There was communal health, of shared excitement and hope.
However, in September, there emerged tribulations of all sorts. Some suffered treacherous side-effects of L-Dopa, such as respiratory crises, while others to their own regressive needs. In the small wards, the despondency would spread from one to another. Every setback then aroused fear in others and every discouragement a blow to the morale of the community. The atmosphere of the ward, its mood, became all important.
The condition of encephalitis lethargica is poignantly expressed in the following recounts.
“Nothing, just nothing.” Miss R would say when asked what she was thinking about.
“I think of a thought, and it’s suddenly gone – like having a picture whipped out of its frame. Or I try to picture something in my mind, but the picture dissolves as fast as I can make it. I have a particular idea, but can’t keep it in mind; and then I lose the general idea; and then the general idea of a general idea; and in two or three jumps my mind is a blank – all my thoughts gone, blanked out or erased.” – Miss R
“She seems to have no appetite for anything, really no appetite for living.” wrote the speech-pathologist, Miss Kohl.
It is a wonder how the world can forget such a moment in history – when a strange disease stole the lives of millions, and for which a cause has yet to be determined. Also, it serves the question of “Should life be sustained, when all hope seems lost? Especially since these cases have shown that recovery is possible after a frozen state of 50 odd years.”
After learning of rare medical conditions such as butterfly syndrome and muscular dystrophy, I asked: “Why would researchers invest time and money into solutions that would only benefit a small percentage of human race?”
To this question, my friend answered:
- With finite resources, governments, organisations and companies will only fund what will give valuable returns.
- There may be chance discoveries that lead to other scientific breakthroughs.
After reading the article, “Determined Parents are Moving the Needle on Gene Therapy” by Emily Mullin, there are further answers:
- Gene therapies have become safer and better at hitting intended targets in the body, leading to a handful of remarkable cures in clinical trials. The success rate has risen.
- Hence, advocates for rare-disease patients are increasingly establishing patient advocacy organisations, raising money for research and even founding their own biotechnology startups to find treatments.
- Also, many rare diseases are monogenic – caused by a mutation in one gene. It is significantly easier to engineer a targeted protein to reverse the disease.
If you were a medical researcher, would you invest your entire career on a solution that would only benefit a few hundred persons in the world?