The Less You Know the Sounder You Sleep

by Juliet Butler

  Almost all of the events in this book actually happened, as described to me in taped conversations and interviews with the twins, their friends, their carers and doctors. I have written The Less You Know… in Dasha’s voice because I felt more empathy for her than Masha, and believed that as the ‘silent sister’ she should finally be allowed to tell her own story.

  Although I knew her so well, I was frustrated at never being able to have a one-to-one honest conversation with her, because Masha, the guard dog, was always present. Her best friend was, by necessity, always going to be Masha, whether she liked it or not. There were a few occasions, when I spent the night with them, when Masha fell asleep while I was talking to Dasha, and then I was able to see glimpses of her own thoughts. But they were only glimpses. She was afraid of Masha and, therefore, like many people trapped in an abusive relationship, loyal to her. But despite this, they still had a strong sibling bond and were natural allies against the world.

  Dasha was deprived of the chance to be valued in society through having a profession, but she felt that in co-authoring their memoir (even if it was filtered through the perspective of Masha) she’d been given the opportunity to do something useful with her life – to change perceptions of disability and show the Healthies that being born different was just that. Different, not Defective.

  I hope that in writing this novel, I’ve given her the voice she never had in life.

  Slava

  Masha and Dasha treated their mentally and physically disabled friends in the same way they treated the able-bodied people they knew. There was never anything in their descriptions of their friends to suggest that they had, for example, cerebral palsy, or no arms or legs. In all my conversations with the twins I was never given the impression that Slava was anything other than a fit and healthy young man. I had no idea that he was about eighteen inches high and severely deformed. Aunty Nadya also never mentioned his physical disability.

  Slava was nineteen when he died. Dasha kept all his letters, which are quoted verbatim in the book. I have been unable to track down his family.

  Aunty Nadya

  I kept in touch with Masha and Dasha after I returned to England in 2001, and when their death became international news in 2003 I visited Aunty Nadya, who told me the details of their final days.

  I met Aunty Nadya for the last time in 2011, eight years after the death of the twins, in her one-bedroom apartment in Moscow. She told me she was dying of bowel cancer. She was completely un-self-pitying – as she always had been with the twins. In their eyes, the people who pitied them were pitiable. Aunty Nadya had no one to look after her because Little Vasya had become estranged from her in his teenage years. I offered to arrange for a carer, but she refused my help. She was admitted four weeks later to hospital where the surgeon – an old friend of hers – told her she was in remission and discharged her. She was, in fact, in the final stages of terminal cancer and died ten days later in great pain on her own in her apartment. Russian doctors do not like death statistics.

  Although Aunty Nadya never told the girls she loved them, I am convinced she did. She gave them all the motherly affection she could, and, as mothers do, despite their different characters, I believe she treated them equally.

  Olessya

  As far as I know, Olessya (not her real name) still lives in the Sixth, but when I went to try and visit her after the twins died, I was told I needed to apply for written permission from the Ministry of Social Protection to enter the home.

  Pyotr Anokhin

  Anokhin worked closely with Doctor Ivan Pavlov, who for many years used dogs – and humans – to develop the theory of conditioned reflexes. Pavlov used electrical shocks, metronomes and a buzzer in his research – a methodology Anokhin would go on to use with the twins. After Pavlov’s death in 1936, Anokhin was considered to be his successor. He was interested in human behaviour and the brain from an early age but he was also fascinated by the separate roles of the nervous system and the blood system on the body’s ability to adjust to conditions such as prolonged sleep deprivation, extreme hunger and extreme temperature change. So when, in 1937, a pair of conjoined twins, Ira and Galya were born in the USSR, with identical genes, separate nervous systems and the same blood system, he removed them from their parents and took them back to his Institute of Experimental Medicine to be studied. They only survived for one year and twenty-two days. Thirteen years later, Masha and Dasha were born – a dream come true for Anokhin – who had put out an alert in all Soviet maternity hospitals following the death of Ira and Galya, asking to be informed of the birth of any more conjoined twins. He descended on Maternity Hospital no. 6 within hours. Having rid himself of their troublesome mother by telling her the girls had died, he began his studies, noting differences in behaviour from the first weeks of life. But he was treading on very dangerous ground. Not because of his abduction of the children and the ensuing experiments, but because some of his work with the genetically identical twins involved the study of their different personalities.

  In June 1950, when the twins were six months old, he was denounced by Stalin’s cronies at the famous Pavlovian session. Genetics was seen as a product of ‘bourgeois capitalism’ – convenient for a Soviet government trying to engineer the perfect social utopia. A speaker at the sessions said: ‘It is an outrage that Anokhin, a disciple of Pavlov, seeks, under the guise of loyalty to his mentor, to systematically and relentlessly revise his doctrine with the rotting, idealist stance of pseudoscientific “theories” of reactionary bourgeois scholars.’

  Although Anokhin defended his belief that ‘we should be permitted to suggest views on embryonic evolution and mechanisms of inheritance of characteristics’, his fate was sealed and he was sent into exile, leaving Alexeyeva and Kryuchkova to secretly carry on his work with the twins in the Paediatric Institute. He returned from exile a year later, after Stalin’s death.

  When I interviewed doctors who had worked with Anokhin on the twins, they saw no suggestion at all of medical malpractice. The experiments were considered acceptable at the time, and were published and admired not only by Soviet medics but also by American and European ones.

  Anokhin’s colleagues still genuinely believed that he was a hero who had defied Stalin and risked his life in the pursuit of science. They claimed he also saved the twins lives by ‘rescuing’ them, and they should have both been grateful.

  I obtained a copy of Alexeyeva’s dissertation on the twins in 1998, before Putin’s clampdown, by bribing an official in the Library of the Academy of Medical Sciences (they asked for $1,000 but we ended up agreeing on $100). I also found Kryuchkova’s scientific report on their differing personalities.

  After the twins left SNIP for Novocherkassk, Anokhin appears to have lost interest in them. He did, however, publish an article in Life Magazine in 1966 when they were sixteen years old, describing how they had been taken in by doctors at birth who, he claimed untruthfully, were still caring for them in Moscow and who ‘lavished affection’ on them. He also mentioned that he knew who their parents were, that they had brothers, and also that they were physically able to conceive and give birth – all answers to questions that had been torturing Dasha for years. He said he envisaged that they would be in need of psychiatric help as they grew older, but of course none was ever forthcoming.

  Defectives

  Dasha was, for most of the twins’ lives, the victim in their relationship, but the twins were also both the victim of Stalinist science, and of the clear-cut division in Soviet society between Defectives and Healthies.

  Defectology was a science adopted soon after the creation of the USSR and was concerned with the study of physically and mentally handicapped children with a view to rehabilitating them. ‘Defective’ children were initially categorized as being either physically, mentally or morally defective. Rehabilitation took the form of taking them away from the parents or charities who had traditionally cared for them and sending them to State organizations to be brought up
by trained defectologists. However, as the myth of the Soviet Union being the ‘best of all possible worlds’ grew, these children were increasingly abandoned and isolated – dumped, as Olessya put it, on to the compost heap of the Soviet garden. In 1980, when the Summer Olympic Games were held in Moscow, a British journalist asked the Soviet Olympic Committee if they would also be hosting the Paralympics. He was firmly told: ‘There are no invalids in the USSR.’

  As the years went by, the general term ‘defective’ was replaced by ‘invalid’, a word which was broken down into other official categorizations, such as moron, imbecile and cretin, uneducable and educable, or walking and non-walking. Everyone else was just ‘healthy’. Yet Soviet propaganda tarred all those who were disabled with the brush of being profoundly and incurably flawed and inadequate.

  In 2006, Vladimir Putin declared his wish that all abandoned children should be placed in families rather than institutions. However, around 340,000 Russian children with disabilities are still being kept in orphanages for ‘Uneducables’ and isolated. If they survive, they are usually transferred to mental institutions for adults or Old People’s Homes. Nearly 30 per cent of all children with disabilities in Russia still live in State care, yet 95 per cent of them have at least one living parent. The proportion of disabled children in orphanages is four times higher than in Western countries.

  Services in Russia for children with disabilities very much reflect attitudes established during the Soviet era. Parents are still encouraged to leave their children to institutional care and sign forms ‘rejecting’ those that are most seriously handicapped. Recently, more families have ignored this advice, but mothers report facing general hostility from society when opting to take care of their children instead of placing them in a government facility. Stigma and shame concerning disability are still prevalent in Russian society and so adoption of these children among Russians is very rare within the country. In 2012, President Putin approved a bill that prohibits Russian children from being adopted by American citizens. A spokesman said that the rationale behind this was that Americans adopt children to get extra welfare benefits and ‘then begin to hate this child’. Sixty thousand Russian children have been adopted by American families over the past twenty years – by far the biggest proportion of any other country – and the vast majority of them are leading happy, supported lives within loving families.

  Dissertation published in 1959 by T. T. Alexeyeva: Neurohumoral regulation of functions in the human body (research on inseparable twins)

  Introduction

  For many years P. K. Anokhin and his colleagues have been carrying out experiments in the Institute of Experimental Medicine to establish the separate roles of the nervous system and the blood system on the body’s ability to adjust to conditions such as prolonged sleep deprivation, extreme hunger and extreme temperature change. The research for this work was carried out on a pair of un-separated twins Masha–Dasha (ischiopagus b. 1950).

  The resolution of these problems in normal experimental conditions on a single organism is an impossible task. However, un-separated twins occur in nature both among animals and among humans and are a unique object for research as their nervous system is usually completely separate and yet their blood is shared.

  They can be used to establish the independent roles of the nervous system and the blood system and thus are objects of great interest as a remarkable human experiment created by nature.

  From the first days of their lives the twins were kept in laboratory conditions. It was also important to study their behavioural development. It was noted that, despite living in an identical environment, developmental characteristics such as speech, movement and nervous processes were markedly different from birth.

  Blood System

  To study the speed with which the blood travelled from one twin to the other we introduced various substances into the blood of one child, such as radioactive iodine, barium, glucose and sodium methane sulphonate. For example, 2,500 units of radioactive iodine were introduced into Masha after which the levels of radioactivity in the thyroid of both twins were measured with a Geiger counter … The kidneys were observed when sodium methane sulphonate was introduced into the ulnar vein of one child. In thirty minutes a distinct change in the contours of the kidneys of both children were observed on X-rays.

  Nervous System

  By the age of two months their faces began to differ. Their reaction to pain (usually introduced by a scalpel, a needle or an electric shock) differed markedly. On being given a bottle of boiling hot milk, for example, Dasha cries out, pushes her scalded hands under her pillow and refuses to touch it again, but Masha repeatedly takes the bottle and then pushes it away crying out.

  At the age of six months the twins cry on seeing any instrument of pain and by nine months they cry on seeing the person who conducts the tests on pain sensitivity (T. T. Alexeyeva). Tests to establish the boundary of the nervous system in each twin were therefore carried out when they were asleep or unawares. Tests to establish discrete conditioned reflex to pain involved administering an electric shock to coincide with the ticking of a metronome. By the age of six months the ticking alone resulted in Masha crying out in fear and Dasha recoiling in anticipation of the shock.

  Blood samples are taken three times a day. Dasha recoils from the needle and must be held down, but Masha no longer reacts by crying and bears the insertion quietly.

  Sleep

  We assessed the depth of their sleep by waking one of them with abrupt stimuli such as a sharp pain or a loud noise in one ear. Despite the wailing of one twin, the other would continue to sleep unless awoken by flailing limbs. As part of our sleep experiments, we kept one or other of the twins awake artificially for long periods. For example, we would constantly stimulate one twin preventing it from falling asleep. Or we would feed one twin and not the other so the fasting twin stayed awake through hunger pangs. In the first year of their lives they were normally fed every three hours, but on keeping one of them fasting for up to nine hours the rhythms of sleep were successfully reversed.

  At all times during experiments the heartbeats were recorded by electrocardiograms (ECG), their breathing was recorded by pneumograms (PNG), their brain activity by an electroencephalogram (EEG) and their gastric juices were analysed through tubes fed into their stomachs. Experiments were carried out concurrently.

  Thermo-regulation

  Since any physical or chemical changes pass from one child to the other within two minutes, the twins represent a remarkable opportunity to examine the role of thermo-regulation through measuring the temperature of the blood. The temperature of one child was lowered for example by packing ice into six thin-walled brass cylinders and placing them on the stomach, spine and flank of one child. It took two and half minutes for the temperature of this child to fall from a normal 37 degrees down to 26 degrees. When the canisters were removed, however, it took an average of fifteen minutes for normal temperature to be restored.

  Hunger

  In order to prove or disprove the theory of ‘satiated’ or ‘hungry’ blood, the twins were fed under separate regimes whereby one twin missed up to three feeds. The gastric juices of both twins were evaluated by tubes inserted directly into the stomach through the mouth. The hungry child would continue to cry until fed even if this was for a nine-hour period, disproving the theory that blood containing nutrients can satisfy the hunger of the organism. Analysis of gastric juices was undertaken when the hungry child was shown the other child being fed and also when it was isolated from its twin by a board. As babies, when the hungry twin was given an empty bottle to suck, it too produced gastric juices indicating a cortical conditioned reflex to secrete gastric juices in the expectation of food. Irritants were introduced into their stomach via a surgically inserted probe to measure the relative acidity of their gastric juices.

  At two years of age they show solidarity by both crying when one of them is in pain. However, by this age Masha exhibits a clearly aggr
essive attitude to Dasha. Masha pinches or thumps her and takes away her spoon.

  From the age of four they were subjected to more advanced tests to compare and evaluate their conditioned reflexes. On seeing or hearing a stimuli such as a metronome that signals the administration of an electric shock, Dasha reacts more rapidly and with more sensitivity. Her heart beats violently while Masha’s remains relatively calm. When a spurt of cold air is squirted into the iris of their eye from a rubber tube, Dasha turns away and screws up her eyes crying while Masha just blinks rapidly and cries. We repeated this experiment sixty-two times until Dasha also just blinked instead of crying.

  When left without stimuli they sometimes play ‘games’ together, copying adult behaviour, for example pretending to give each other injections, take blood or insert feeding tubes. When older they were moved to the window and would stare out at the cars and buses with great interest and for long periods of time.

  By the age of six it is clear that Dasha is much more obedient. She listens attentively to instructions and tries conscientiously to do her best to fulfil them. Masha’s behaviour is very different. She quickly loses interest or refuses to carry out the tests. For example, one game to test their reactions involved each twin holding a bladder and squeezing it on seeing a flashing light. Dasha always responded diligently but Masha turned away and threw down the bladder after eight to ten goes. When told to pick it up she sometimes refused to play altogether saying, ‘Squeeze it yourself.’ Masha continues to be aggressive to Dasha, who now does not fight back.

  Both twins react identically to the heart/eye reflex where the heart is slowed down (and can be stopped altogether) by applying pressure to the eyeball.