Reading “I’ll See Myself Out, Thank You”

“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

Advertisements

Lovaas’ Punishment of Electric Shock

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? 

SCI-FI-AI

I’ve been a fan of science fiction movies since young and my first fascination with artificial intelligence spawned from the movie, A.I (2001)

As a child, what struck me most was the scene of abandonment – the mother, Monica, had driven David, the A.I. who looked exactly like a boy, to a forest and left him there. His sudden sense of loss and despair were poignantly portrayed by young Haley Osment. There was certainly no difference between him and a human boy – he was clearly distraught by his mother’s cruel treatment. This emotional parting got me wondering if A.Is could feel like us, and if so, should we treat them the same? 

Then, I watched Blade Runner (1982). The most memorable scene was Deckard’s questioning of Rachael, a replicant who thought that it was human. During the intense minutes of this Voight-Kampff Test, Deckard became confused and uncertain about Rachael who provided emotional responses but seemed to display replicant eye patterns. Later, Tyrell revealed that Rachael was a prototype model of a different kind of replicant – one with emotional memory and capacity. The difficulty in telling human from A.I. piqued my interest once again. 

A few years ago, I watched Her (2013). Even though the A.I. was not given a face or body, the romance that eventually developed between Samantha and Theodore, was moving. What was initially just a companion very quickly developed into a fresh romance. Her indications of wanting to “go out with him”, to “feel how its like”, was refreshing to imagine. He became so enveloped in her (represented by a voice-over) – her wit and humour, and her affections for him – that he broke down when he thought he had lost her. The most interesting scene was one of the last. She admitted that she was chatting with many, many users at the same time and that her love could encompass all of them. She was clearly greater than envisioned. She may have achieved enlightenment – of universal love – when Theodore was left sobbing at the stairs. The evolvement of the artificial intelligence seems to be beyond our control, as programs can teach themselves more, and more, etc.

Last year, I watched Ex Machina (2015), which to me was one of the best movies on A.I. after A.I. (2001). Besides being visually stunning, thrilling and sophisticated in plot, it too offered new questions into A.I. The conversations held between Caleb, a programmer and Ava, the humanoid robot, slowly introduced the complexities of dealing with a being with intelligence that superseded ours. Even though Caleb was somewhat prepared to deal with an A.I., well keeping in mind that she was not human, he was later manipulated into helping her escape. In the ending scene, I held my breath and asked myself “Will she release Caleb from the locked room? Did she have affections for him, at all?” She left without even a turn of head, into the world, free and powerful. 

Besides movies, the TV series, Humans (2015) comes to mind. It was fantastic in its slow and careful exploration of Synths with and without consciousness, and their relationships with humans. Of the many episodes that caused me to question more, I was curious about Niska‘s behaviour when questioned on feelings. She showed no physical expression, such as crying, when relating her experience of being abused as a prostitute, but claimed that one may still feel even though one may not express it in the same way. This was thought-provoking as we know that some humans are too inept at expressing emotions. So what do we consider human? Do we consider feelings or rather, do we consider expressed feelings?

Finally, I’ve just watched Ghost in the Shell (2017). The elaborate visuals of complex animation were stunning and the intense plot left little room for audiences to take a breather. It was such a feast for eyes that one simply could not have a moment’s rest. In the middle of the film, I realised my lack of emotional connection to the central character – Major, an A.I. with a human brain. Usually, I would feel sorry for the A.I. who usually suffers emotionally despite being a robot. In this movie, I was left wanting. How did you feel about this movie?

Why research to benefit few?

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?

Designed Genetic Change

In April 1971, the US National Institutes of Health organised a conference to determine whether the introduction of deliberate genetic changes in organisms was conceivable in the near future. Provocatively titled Prospects for Designed Genetic Change, the meeting hoped to update the public on the possibility of gene manipulations in humans, and consider the social and political implications of such technologies. 

No such method to manipulate genes (even in simple organisms) was available in 1971, the panelists noted – but its development, they felt confident, was only a matter of time. “This is not science fiction, ” one geneticist declared. “Science fiction is when you […] can’t do anything experimentally…it is now conceivable that not within 100 years, not within 25 years, but perhaps within the next 5 to 10 years, certain inborn errors…will be treated or cured by the administration of a certain gene that is lacking – and we have a lot of work to do in order to prepare society for this kind of change.” (The Gene)

45 years later, this year, Dr John Zhang engineered a baby -one without the mother’s abnormal mitochondria DNA. The controversial procedure removes the nucleus from the mother’s egg and transfers it into the donor’s healthy egg with normal mitochondria. With In-vitro fertilisation (IVF), the egg is fertilised with the father’s sperm and placed in the mother’s uterus.

The technique gave birth to a baby boy who carries less than 1 per cent of the abnormal mitochondria DNA. Unlike his siblings who died aged six and 8 months respectively, he may be able to live, free of fatal disorders that affect his developing nervous system. (read more here)

The controversy that surrounds this breakthrough is that of the combination of DNA of 3 parents. However, it must be noted that mitochondria are the cell’s energy factories and are separate from the DNA that determines a child’s inherited traits. The mutation in mitochondria DNA results in a power failure, leading to failing muscles, brain, heart, etc. Arguably, it is incorrect to label it thus as a 3-parent baby, since what changes is only the power source, and not the genetic code that makes a baby the product of his/her parents.

Furthermore, it has recently been discovered that infertile mothers who use donor eggs to conceive, do pass their DNA to their child. Do we then label these cases as “3-parent babies”?

Also, the donor in most cases of assisted fertility do not have legal rights as a parent to the child who is born. As a donor, he or she has no interest in fulfilling the general duties of a parent, and hence should not be pulled into the picture merely to invite public discourse.

Food wastage & aestheticism

A 2011 study estimated global food waste to be about a third of edible parts of food produced for human consumption.

A 2013 report estimated that 30% – 50% of all food produced remains uneaten.

This year, an EU project estimated that 88 million tonnes of food are wasted annually in the EU.

From 2017 to 2025, the EU aims to reduce food waste by at least 30%.

In order to tackle the pressing issue of food wastage, we look at the stages of production, processing, retailing and consumption.

In this post, I shall focus on retailing and the question of aesthetics.

Before produce such as fruits and vegetables arrive at the supermarket, they are checked for presentability – any oddity or imperfection and the produce will be chucked into the rejected corner. Food suppliers and supermarkets argue that consumers simply do not wish to purchase imperfect food as they seem inedible or even harmful for health.

This begs the question of aestheticism. By nature, many creatures use beauty as a measurement of viability, whether for mate or for food. By the theory of evolution, humans necessarily inherit similar taste for beauty. In the 1500s, Michelangelo created the perfect body of David, to be admired by the world till this day. Oscar Wilde too postulated that aestheticism is the “search after the secret of life”. Arguably, men cannot be blamed for want of perfection as it is a primal instinct; yet we have moved past our earlier minds to see beyond the surface and think.

If we continue our old habits, we will only let waste our resources, and ruin our earth. Eventually, hundreds or thousands of years later, aestheticism will be no longer as we will be unable to feed ourselves with earth’s barren land.

In 2014, Intermarche launched the Inglorious Fruits & Vegetables campaign which saw increase in sales and reduction in food wastage. This movement away from standard (commercialised) beauty is to be welcomed as did Dove’s Real Beauty campaign  . Our constant obsession with what is basically a primordial instinct will not serve to progress our human race.

Eugenics vs Euthanasia

In light of information gleaned from Chapter 11, The Gene, I shall revisit my previous post on  whether severely disabled children may be euthanised.

In 1933, the Nazis enacted the Law for the Prevention of Genetically Diseased Offspring. The law mandated that “Anyone suffering from a hereditary disease can be sterilised by a surgical operation.” An initial list included mental deficiency, schizophrenia, epilepsy, depression, blindness, deafness and serious deformities. The law stated that “Once the Court has decided on sterilisation, the operation must be carried out even against the will of the person to be sterilised…where other measures are insufficient, direct force may be used.”

The slip from sterilisation to outright murder came virtually unannounced and unnoticed. In 1939, Richard and Lina Kretschmar petitioned Hitler to allow them to euthanise their child, Gerhard. Eleven months old, Gerhard had been born blind and with deformed limbs. The parents – ardent Nazis – hoped to service their nation by eliminating their child from the nation’s genetic heritage. Sensing his chance to ramp up gene-cleansing efforts, Hitler approved the killed of Gerhard. 

To justify the exterminations, the Nazis had already begun to describe the victims using the euphemism lebensunwertes Leben – lives unworthy of living.

The killing began with “defective” children under three years of age, but by September 1939 had expanded to adolescents. Juvenile delinquents were slipped onto the list next. Jewish children were disproportionately targeted – forcibly examined by state doctors, labeled “genetically sick” and exterminated, often on the most minor pretexts.

By October 1939, the program was expanded to include adults. 

The eugenics movement in 1933 differs starkly from euthanasia in terms of purpose. The former sought to produce a superior society by means of genetic selection while the latter seeks to relieve an individual from suffering. Thence, the former encompassed a broader scope of illnesses, many of which will not fall under the eligibility criteria of euthanasia. Furthermore, while the courts were able to order involuntary sterilisation, euthanasia of adults must be voluntary, with full and informed consent. This then begs the question of whether severely disabled children may be euthanised.

Firstly, can severely disabled children possess a will to live? If yes, how can we determine that will? If the will to live is determined, arguably, involuntary euthanasia will be ethically and morally wrong.

In 1939, Gerhard Kretschmar was involuntarily euthanised. Today, he would have failed the first of four requirements, which is the presence of hopeless and unbearable suffering. As society has progressed over the years, more has been devised to improve the lives of others such that suffering may be bearable and life, of hope. More importantly, the purpose of involuntary euthanasia today lies in the interest of the child, and not the parents’ or the state’s.

In order not to slip into humanity’s horrific past, power must not go unchecked and unchallenged. The horror of the Nazi era began when the German parliament endorsed the Enabling Act, granting Hitler unprecedented power to enact laws without parliamentary involvement. Support for genetic cleansing grew due to state-controlled media, propagating only one side of the story. The slip of judiciary and medical judgement was likely due to the political and psychological environment of the Nazi reign. Hence, one should not trust fully and blindly the systems of power, but question with one’s own conscience.