“The thousand natural shocks that flesh is heir to.”
How would you feel, if your baby was born disabled? Imagine two healthy parents united in eager anticipation of a wanted child. Imagine a normal pregnancy and an untroubled birth. And then imagine the baby taken away, the doctors conferring, anxiety and confusion followed by bad news. Your baby is different…abnormal. His arms and legs and head are deformed… he is a dwarf.
How would you react? It would depend on your understanding of disability, and your attitude towards it. It would depend on the tact with which the diagnosis was communicated, and how positive the doctors were about the prognosis. It would depend on whether you saw the birth as a personal failure, a heavenly curse, or a random quirk of biology. Above all, it would depend on how responsible you felt for this unexpected outcome.
In 1927, Geoffrey Shakespeare was utterly shocked when his firstborn son William was born disabled. His wife, Aimee already had two children from her first marriage, and they were both fair and fit. So my grandfather jumped to the obvious conclusion that the source of the problem lay in him. It gave him a sense of shame and guilt which continued until his dying day.
Whereas William had an ambiguous relationship with his father, to whom he was never very close, he always idolised his mother, who accepted her disabled baby from the start. For example whereas on July 7th 1949 he noted “Mummy is a wonderful person and seems to know me so well, I sometimes think I don’t appreciate to the full what a wonderful person she is”, on April 19th of the same year he wrote “I don’t think Daddy has much inner feeling of life as a whole – some of the things he says are obviously very silly and inconsiderate.” Fifty years later, my father wrote in his memoirs:
My mother had been a major influence in my early life. She was a remarkable kind, gentle person. She was essentially good without being obvious about it. She was a person with many friends who would always go out of their way to do anything for anyone. She never said anything unpleasant or negative that I ever heard and was universally popular with people of all ages. My relationship with her was one of great love and understanding. She knew of my problems and appreciated them
Other family members have told me that they found Aimée a rather shallow and uninteresting person, a socialite who spoke in an affected upper class drawl. I discovered that the rest of the family joked about her catchphrase: “Too, too delightful” and nicknamed her Cynara, from a poem by the decadent poet Ernest Dowson. I am not sure why these verses about the poet dancing and feasting and drinking and flinging riotous roses but remaining “faithful to thee, Cynara! in my fashion” were relevant, but perhaps it refers to her reputation as a social butterfly – from her photographs, she was hardly the femme fatale. But Aimée’s loyal support for my father was the bedrock of his later success. As he wrote:
I can always remember having my hair cut in a barbers in Cambridge… I had arranged to meet my mother at a certain time and place. Obviously she wondered if I would be having my hair cut and looked in at the barbers. I heard her say to the receptionist. “Is anyone having their hair cut?” to which the reply was “One gentleman, madam.” My mother said “A small gentleman?” to which the reply was “Yes, madam”. It seemed to me by that very conversation that it was completely understood by her that I was a small gentleman, nothing more, nothing less. I have never forgotten that conversation.
It was this acceptance which William craved from his father, but which was a long time in coming.
How much was known about restricted growth in 1927? Although the first description dated back to 1791, medical knowledge was patchy. William Shakespeare’s condition achondroplasia, the commonest form of disproportionate short stature, was named by Parrot in 1878 and described by Marie in 1900. There’s a case history by William Turner FRCS in The Practitioner of September 1899 in which he describes a young girl brought to him at the Westminster Hospital:
“the deformities were noticed at birth, but have become more marked as the child develop, owing to the increased size of the head and body, as compared with the limbs. She has always been very intelligent, and is considered much sharper than her sisters” [i]
Her symptoms were different from cretinism and rickets: the mother had not suffered from syphilis, and “cannot assign any reason for the condition of the patient”. Turner concludes
“It is evidently due to some peculiarity impressed upon the cartilaginous tissue during intrauterine life.”
In the accompanying photograph, a rather anxious looking achondroplasia girl of ten stands next to her coquettish sister of three: the image could be contemporary, and Turner’s explanation of the syndrome is accurate too. But in 1927, there would have been no medical consensus on the cause and treatment of achondroplasia. Hormone theories were becoming popular, and genetics was barely understood. In any case, scientific accounts would had less impact on parents than ideas from folklore and mythology.
Dwarfs have been found in every society throughout human history. Despite legends of dwarf tribes in Africa or Egypt, the vast majority of such children would have been born to average size parents, as two thirds still are today. Dwarfs danced in the rituals of the Dionysian cults of Greece, and were portrayed on ancient Greek pottery. Egyptian tombs contained dwarf images because Bes, god of fertility was a dwarf, and so was Ptah, the lord of creation. Egypt was the only ancient society where dwarfs had equal status, and there are records of dwarf officials with wives and children. In Asia, achondroplasic figures danced on Buddhist guard stones and in Hindu carvings. In Africa, dwarfs were sacred dancers in Djeho rituals. Most European courts from the medieval period onwards had their dwarf jesters and courtiers. The Spanish painter Velasquez was one of the few to take dwarfs seriously, his portraits endowing them with the dignity that their royal patrons lacked. In 1937, when my father was ten, Walt Disney released his first feature length animated film, in the process turning the noble dwarfs of the Grimm Brothers story into the chubby and foolish Seven Dwarfs.
Each era has its own explanations for the unexpected birth of an anomalous child. The medieval idea of the changeling, the goblin child substituted for the stolen away human baby, might be a rationalisation of congenital disability. The Biblical tradition suggests that disability is a punishment from God for the sins of the parents. Cultures that believe in reincarnation similarly consider disability in karmic terms, a retribution for previous wrongdoing. For several centuries, western medicine taught the theory of maternal impressions, suggesting that the mother had seen something shocking during pregnancy,
However much the doctors reassured him, Geoffrey always remained guilty about his disabled child. I think I can guess why. His father and both grandfathers were Baptist ministers. His father, the great Nonconformist leader John Howard Shakespeare, taught his children that God made his will known in the world through signs. Geoffrey could recite large sections of the Bible off by heart. So he knew that in Leviticus it is written that the sins of the parents are punished by the disability of their children.
My grandparents first met in 1921 on a Mediterranean cruise hosted by Lord Essendon, a shipping magnate from West Hartlepool. With her curious scrunched-up face, Aimee was never a beauty, but she had a smile which lit up a room. At the time, she was married to Sir Thomas Fisher RN, a man ten years older than my grandfather. During the Great War, Captain Fisher had been instrumental in the introduction of the convoy system. After the Armistice, he became Managing Director of the Canadian Pacific Steamships Company, In an era where Atlantic crossings made big money, Sir Thomas became a tycoon.
After serving in the army, my grandfather had been at Cambridge University, where he was President of the Union, then worked for Lloyd George, and later became a Liberal MP. Both the Fishers soon became friends with the young and witty Geoffrey Shakespeare. Geoffrey even persuaded Sir Thomas to become the Liberal candidate for Portsmouth at the election of December 1923. To Fisher’s alarm, a 10% national swing meant that the Liberals came within a whisker of winning the seat. Defeat left Fisher free to continue his business career, which took him out of the country for much of the year, commuting back and forth to North America. In her husband’s absence, it is my suspicion that Geoffrey Shakespeare developed a close friendship, possibly even a romantic affair, with Lady Fisher.
Sir Thomas worked hard and played hard, adding huge sums to the fortune that he had inherited from his Hickman forebears. There was a house in Chelsea, a place in Hampshire for his mother, and a rented hunting lodge in Scotland. He drank a bottle of champagne every day, and chain-smoked cigars. And then in February 1925, aged only 42, he suddenly dropped dead from a heart attack. As soon as was decently possible, his widow married my grandfather on September 16th 1926. I know this because I found a photograph and a press cutting in my grandfather’s papers. The wedding was held at 10am in the nearby St Columba’s (Church of Scotland), Pont Street, London, just round the corner from Aimee’s home in Sloane Street. Geoffrey holds his shiny top hat, gloves and cane in front of him, and smiles almost nervously at the camera. Aimee looks thoroughly happy, a fur coat slipping off her shoulders and a feather in her cap. With his socialite wife, Geoffrey inherited two step children, a large Chelsea home, and the means to pursue his political career.
If Geoffrey and Aimee had pursued an adulterous affair, then this certainly would have contributed to my grandfather’s guilt. At the very least, he had coveted his neighbour’s wife. At worst, he may have drawn the comparison to the story of King David in the second book of Samuel chapter 11. When David commits adultery with Bathsheba, wife of Uriah the Hittite, God punishes him by killing his son Absalom.
My grandfather may not have understood the science, but he did realise that dwarfism was hereditary, and he was determined that the condition should not continue in the family. One short Shakespeare was enough. It’s surprising to me that Geoffrey risked having any more children: in 1931 he must have been very relieved that his daughter, Judith, was born normal. When he later remarried, after the death of my grandmother Aimee in 1950, he told his new wife, Buffy, that he did not want to have any more children, for fear they would be disabled. When my father grew up, Geoffrey told him never to have children, because the chances were too great that they would have achondroplasia. This was not something I discovered till long after my grandfather’s death. He had always been so kind to me, that it was a shock to realise that he would have preferred it had I not existed.
* * * * *
I don’t know if my father ever took any notice of Geoffrey’s advice, but in any case, his first problem was to find a wife, and for a long time, my father had no idea where he was going to get one. It was the 1950s, and people were less accepting of disability and difference that they are today. He watched his school and university friends as they dated girls. Later, he attended their weddings. But it didn’t seem to be happening for him. Whether by accident or design, the people he chose as his closest friends tended to be lifelong bachelors.
My father was born into a family who were witty, confident and above all, successful with the opposite sex. My cousin Nicholas sums up the proclivities of the Shakespeare male in a pithy sentence: “Teasing, bread sauce and a wandering eye”. His grandfather, Bill, was the black sheep of the family, seducing one of the maids as a young man, later as a GP in Malvern having an affair with one of his patients. My grandfather Geoffrey was a ladies man, the life and soul of every party. There is a rumour that even the great Baptist, John Howard, had a mistress.
In the post-war years of William’s young adulthood, there also was his half-brother Nigel, a dashing ex-soldier who had recently married the beautiful, half-Chilean, Gloria Vaughan. His half-sister Pam was pretty and delightful, a blond-haired, blue-eyed debutante. According to my father, she had many admirers, and he would “gain certain personal advantages from the man of the moment who was trying to win her affections.”
But William lacked other personal advantages. He did not find romance so easy, as I discovered on reading his diaries. I am sure he found women as attractive as the next Shakespeare. But they didn’t see him as a prospective partner. At boarding school, there was scant opportunity to meet girls. But even at Cambridge, he had little success. He was kind and loyal and well-liked, but unlike his father and half-siblings, he did not have an outgoing personality. Added to that was the unique handicap of his physical difference.
The teenage years are often the first time when a restricted growth person feels excluded and self-conscious. The growth spurt at puberty exacerbates the height difference from classmates. As non-disabled friends start going to parties, and wooing girlfriends and boyfriends, it becomes starkly obvious that dwarfism is a major obstacle to romantic success. It was true for my father, and it was true for me.
I remember feeling very low and lonely during my teens. Friends would point out that my father had found a beautiful partner in my mother, but somehow this seemed unattainable. For Dad it would surely have been much worse, for he had no role models at all. He had no idea how and where he would ever find love. As he said to his cousin Ann, “I do find it very difficult. I’d like to have a girlfriend, but can’t get going with it.” When I read in his diary about the girls he became fond of, the friendships which ended in rejection, and his despair at his lack of progress, I can empathise with how he felt. After a thwarted effort to hold the hand of one of his sister’s friends in the cinema, he writes
Why should a nice attractive young girl like Jennifer take any notice of a wretched dull little dwarf?
For several years, he set his sights on his cousin Jane, the daughter of his Aunt Mary. When Mary brought her girls to England, William welcomed them, and took them to the cinema. Several years running, he went to Chicago for summer holidays with his American cousins. He confided his hopes about Jane in his diary, and recorded her warmth towards him, waiting anxiously for her letters. Finally, Aunt Mary made it very clear that she disapproved of the relationship. Despite the fact that she herself married her cousin, she wasn’t prepared for William to become engaged to her daughter. Possibly she felt that they were too young, or perhaps she was unwilling for Jane to marry someone with a disability. Whatever the reason, it was a major setback for my father’s hopes. Later Jane married Ladis Kristof, a Roumanian academic, William wrote to her after the wedding:
You looked sweet in your photograph darling – I had a moment or two of Nostalgia when I saw it, there is no one I want to be happier than you darling and I do hope you have found true and lasting happiness – what an elusive thing it is? I will never love anyone as much as I have loved you, but I am not so much sad, but pleased you seem so sure of yourself. You have done so much for me and given me the courage to undertake my present existence which I so much enjoy.
Even after he had set his heart on Jane, Dad wasn’t above trying his luck with his sister’s school friends. His lack of progress is a constant concern in his diaries. For example, the entry of April 18th 1949, when he was 21 and a student at Cambridge:
Feeling depressed and despondent about next term with this wretched exam hanging over me. And the worry about my size. I read the paper on it – it is probably hereditary. There is also the emotional worry… In a way I wish I did not love anyone at all, it would be much simpler, happier situation I should think – in my case anyway.
For more than a decade, my father struggled to find a woman who would marry him. He did have many female friends. When he worked as a trainee manager at London Brick, there was a secretary that he was close to. There are other names which come up in the diaries, girls he took out for dates, or went on holiday with to Europe. He never found it difficult to make friends with women. But all of them preferred to stay just friends. None of them would risk marriage to a disabled man, however kind and sensitive he might be. When I conducted research with restricted growth people fifty years later, I found that our respondents were more likely to remain single than non-disabled people; often marriage came much later than for non-disabled peers. Many people met partners with the same condition, via membership of the Restricted Growth Association, a network which was only founded in 1970, twenty years too late for my father.
By 1962, my father had probably almost given up hope. He was in his mid thirties by then, a registrar at St George’s Hospital. Had he not suddenly become very sick, it might never have happened. A serious bout of viral pneumonia left him hospitalised. It was perhaps this very illness which would weaken his heart and lead to his later health problems. Characteristically, he made friends with Jill, one of the intensive care nurses. After he recovered, he went round to her flat for dinner, where he met her friend Sue, another student nurse. A dozen years his junior, Susan Raffel was a shy girl. She was tall and dark, with long black hair, a real beauty. She had had bad experiences with men, and perhaps she felt that Dr Shakespeare was less threatening, more gentle, than the other doctors who were always asking her out. He couldn’t believe his luck when she agreed to go on a date. After a series of dinners at the Café Royal or the Gay Hussar, and trips to the theatre and the ballet, my father made up his mind. He was certain that Susan Raffel was the one. And, finally, she seemed to like him too.
Unfortunately, his prospective mother-in-law had different ideas. In late 1962, Susan took William – whom she always called Bill, as did all his colleagues – to meet her mother Sheila in Brighton, where Sheila worked as a caterer. Although she got on well with William, he wasn’t the husband she’d planned for her daughter. As my mother explained to me, decades later: “She had a very old fashioned view. She wanted me to have what she considered to be a normal happy marriage. She didn’t actually call him anything, but she just made it clear that there’s no way I should marry him because people didn’t marry people who were small. They weren’t for marrying. She would have tried anything to put me off the idea.”
During 1963, the relationship continued: they went on dates, and Susan met William’s family and friends. One of his medical colleagues even took her aside and asked her what her intentions were: William was very keen on her, and if she wasn’t serious, she should make that clear to him before it was too late. Susan was in a quandary. She did not want to defy her mother’s wishes. And while she liked my father – after her previous bad experiences, he was a man she felt she could trust – she was frightened about what the world might think: “I was scared of other people’s reactions, particularly my own family, and I wondered how I would be able to remain close to him with all the opposition. I wondered if I’d be swayed at some point by other people’s pressures on me.”
William was honest, and reliable and kind, and above all persistent. He told her he loved her desperately, and begged her to marry him. But Susan told him that although she felt she loved him, she didn’t feel she was in love with him and she didn’t want to make promises she could not keep. Finally, when he asked her to make a decision, she said yes, on the spur of the moment.. They chose a Ceylon blue sapphire ring at Cartier’s. Susan returned to Brighton, where she was about to start her midwifery course at Sussex County Hospital, intending to share her mother’s flat. But on hearing the news, Sheila was furious. She laid down an ultimatum: “You are never to see him again, I forbid you to see him.”
When Susan defied her, Sheila threw her out. At first, Susan went to Liverpool and worked in childcare, staying with her nursing friend Jill. But in the autumn, after finishing his job as a registrar, my father went to work in North America. As a compromise, my mother had promised her mother to delay her marriage by 12 months, and not to see my father in the meantime. But now William asked her to join him. Torn between her mother and her fiancé, my mother finally flew to Montreal, to Sheila’s fury. William and Sue spent a month driving around Canada, before going down to Boston in late October, where both of them found work at the Children’s Hospital.
Geoffrey, too, was opposed to the engagement. He worried that things might not work out, and didn’t want his only son to fail. Perhaps he also suspected that marriage would lead to a family, something to which he adamantly objected. He and his wife Buffy met Sheila and took her side of the argument, feeling that William and Susan had handled things badly. My father wrote to Geoffrey from America, shortly after the assassination of John F. Kennedy, in some indignation: “We all agree that there have been mistakes on both sides in this affair. However, for you to say that you had not been consulted by me is disloyal and somewhat untrue.”
In early April, William wrote a conciliatory letter to his future mother-in-law, apologising for going against her wishes. He had tried to speak to her the previous autumn, but felt she had misconstrued him. He wrote, “I had from the beginning expected you to oppose our marriage. It would be unnatural if you had not done so, for obvious reasons.” But he was adamant about his intentions, told her they were about to put an announcement in the papers and that “as it would undoubtedly upset you to see us being married, we think it would be sensible to be married quietly in the States sometime early in June.” After struggling to find a wife for so many years, and now aged 36, he was determined not to be thwarted by anyone.
The engagement of William Geoffrey Shakespeare and Susan Mary Raffel was announced on April 23rd 1964. It was the four hundredth anniversary of the poet’s birth. Thanks to their sense of timing, the story made the front page of the newspapers both in America and Britain. It reveals a public relations savvy that I had not suspected in my father. Perhaps it was the cheapest way of notifying their friends back home of the engagement.
On June 4th the same year, my parents got married in Boston. Although still not reconciled to the idea of a dwarf son-in-law, Sheila sent a hard-earned £25 towards the costs of the wedding. To the delight of the reporters, William Shakespeare’s best man was one of his fellow registrars, Bill Macbeth. After the ceremony at Holy Trinity Church in Brookline, Sue cooked a meal for a few friends and colleagues. The next day, the newly-weds drove down to New York in their Volkswagen Beetle, where they meet up with my father’s cousin Jane, and her new husband Ladis Kristof. Taking the subway to see the New York World’s Fair, my mother noticed people openly staring and giggling at her husband. She felt frustrated and angry. It would take her many years to get used to other people’s reactions to my father’s appearance.
After a honeymoon driving through the American South, my parents voyaged home, via the West Indies, to England, where my father had a new job as a paediatrician in Buckinghamshire. Using money left to him by his mother, they bought a little house on a big new housing estate in Aylesbury. Within a year of their return, whether by accident or design, my mother fell pregnant. It must have been a time of tension for both of them.
My parents knew the laws of human genetics, which had been discovered by the Czech monk Gregor Mendel, carefully breeding pea plants. His seminal paper was published in 1866 and promptly forgotten, cited about three times over the next thirty years. But in the 1900s, his work was rediscovered, launching the science of genetics. As my parents learned in their training, and now everyone gets taught at school, genes are the instructions for life, written in the language of DNA. Genes are found on chromosomes, and chromosomes come in pairs. Everyone inherits two copies of every gene, one from each parent.
Achondroplasia is a dominant genetic condition, meaning that you only need one copy of the gene to develop the condition. So everyone with achondroplasia has one copy of the affected gene, and one copy of the normal gene. Some people might not like that word normal, but strictly speaking, it’s accurate. Occurring once in about every twenty thousand births, achondroplasia is unusual, rare, even abnormal. Evolution designed the human frame somewhat differently, and this version doesn’t work as well. But the word “abnormal” sounds pejorative, and some people find it dismissive. They feel a judgment is being made on them as people.
New instances of achondroplasia come about by mutation, another emotive word which conjures up images of horror films and mad scientists. When I learned about genetics in school biology classes, I felt a mixture of embarrassment and pride, to find these textbooks talking about me. Later – and I know I am not unique in this among disabled people – I took a particular pleasure in the X-Men series of comics and films, featuring the revenge of the mutants. I didn’t realise then that being a mutant hardly singled me out. As Armand Leroi writes, “We are all mutants. But some of us are more mutant than others.” [ii]
Without random mutations, there would be no variation for evolution to work on. In Jennifer Ackerman’s words, “error opens the door of possibility” [iii]. Modern biologists understand that DNA mutations happen all the time, throughout our lives, in every cell, not just the gametes. Radiation and toxic chemicals trigger genetic damage, and public concern, but there are also many more innocent mutagens. The oxygen we breathe in, the ultraviolet rays from the sun, and the food we eat, all cause random mutations in our cells. But achondroplasia and other congenital conditions arise from mutations in the egg or sperm which combine to create the growing foetus. These mutations are then reproduced in every cell.
Women are born with their full complement of eggs. As they age, their eggs deteriorate in quality. Mistakes occur in chromosome copying. That’s one reason why older women have a higher chance of infertility, caused by chromosome errors. It also explains why they have a raised chance of their foetus having chromosomal abnormalities such as trisomy 21, which causes Down’s syndrome. Instead of the normal pair of chromosome 21, a person with Down’s syndrome has three copies, and this extra DNA causes problems in the brain, the heart and other organs.
Advanced maternal age is well known to be a cause of disability. But in this case, Nature is not sexist. Sperm, as well as eggs, are vulnerable to age. Spermatozoa have a brief shelf-life. Men are constantly making more. As men get older, their DNA copying mechanisms start to get less reliable. Errors start creeping into the process. I l imagine an elderly photocopier, which starts churning out pages with random spots and blotches. In DNA terms, those blotches are spelling mistakes: substitutions, insertions or gaps in the genetic code. Mutations can happen at any age, but older men are more likely to have these genetic mutations in their sperm. In some cases, these DNA changes will lead to their children having single gene conditions such as achondroplasia: older fathers, not just older mothers, should be a source of anxiety for the genetic hygienist. My grandfather was not old when William was born, but the mutation was almost certainly found in his sperm. So he was right to feel responsible, but not right to feel guilty. Modern geneticists counsel patients not to feel shame for something which is beyond their control.
But in my father’s case, he already had the mutation. If you are born with achondroplasia, or any other dominant genetic condition, you have a 50% risk of passing your condition onto any children you might have. If they inherit the affected gene, the child will be short. If you pass on the ordinary gene, they will be average height. Each new conception is another toss of the coin.
My parents knew that the odds were even that their child would be short. But nobody could predict or control the outcome. Their only other choice was not to have children at all. I imagine they felt that achondroplasia was not a terrible problem. They knew it was a minor disability, not a punishment from God. My father had done well for himself and had a good quality of life. So they were willing to take the risk. But Geoffrey was very upset and deeply opposed to them having children. He did not want the family shame to continue into a second generation. He refused to speak to my father throughout the pregnancy. He sent his wife to meet my mother, and tell her how inconsiderate, unkind and cruel she was, that she was asking for trouble.
So there was my father, with short stature, and my mother, who was rather tall for a woman, and there was me, growing in her womb in Aylesbury, Buckinghamshire, while my father gained experience as a doctor. They could have no idea of whether I’d be short or tall, male or female. Nine months later comes my father’s laconic diary entry for May 11th, 1966: I am afraid he is affected. My mother told me that when I was born, and it was obvious that I, too, had achondroplasia, my grandfather refused to come and see me for months afterwards.
Nearly five years later, on February 12th, 1971 my brother was born. For the second time, they’d taken the risk. I remember waiting at home with my maternal grandmother, four years old and excited. The telephone rang and it was my father with the good news:
“You have a brother!”
“Does that mean it’s a little boy or a little girl?” I asked. But the baby’s sex was not important, it was his height that the family were worried about. And he didn’t have achondroplasia. He would be normal. The genetic lottery spat out two ordinary genes, and James was tall. As he grew up, he began to resemble more and more our grandfather Geoffrey. When he came to have children, there was no danger of them having achondroplasia. I imagine that my parents were very relieved. They knew the odds. The gamble of having a second child had paid off. The law of averages worked for once. After James’ birth, my father signed up for a vasectomy. They weren’t taking any more chances.
* * * * *
I followed in my father’s footsteps, quite literally. I went to the same school, and I followed him to Cambridge University. I didn’t have his red hair, but otherwise I looked like him. But I was born into more accepting times, and I had the benefit of a supportive father. I also had a different, more assured personality. Whatever the reason, I grew up confident, even cocksure. Consequently I had a much easier time forming relationships than my father had done. Like him, my teenage years were troubled, anxious and tormented by thoughts of inadequacy. But as soon I reached University, life improved. I met women to whom my disability was not a disqualification for a relationship. They thought I was clever, funny and confident, and wanted to go out with me. When I brought girls home, my father was first disbelieving, then admiring, that things had turned out so much easier for me than they had been for him. Although given that he stayed married to one woman for more than three decades, and I didn’t seem able to make relationships last more than a few years, maybe there’s nothing for me to feel smug about.
After completing my degree, I was in a hurry to get on with life. I started work at Cambridge Free Press Worker’s Cooperative the week before I graduated, and turned up for graduation with black printer’s ink under my fingernails. Since that February, I had a new girlfriend, not a student this time, but a shy Sheffield girl who went around barefoot with bleached hair and hippy clothes. She was utterly different from anyone I had ever met. We were young and naïve and in love. When Lucy wanted to start a family immediately, without worrying that we had not got marriage, careers or life experience behind us, I reckoned it was a great idea.
My parents thought differently. When I rang them that autumn to tell them that Lucy was pregnant, they arrived at our shared house the next day and sat us down at the kitchen table. They both believed that we were too young to have a baby, and they were probably right. As usual, it was my mother who took the lead, although I am sure my father was in agreement. She didn’t think I was ready to become a father, she probably didn’t think that Lucy was the sort of person I should share my life with, and she certainly didn’t think we should continue the pregnancy. The main argument she used was the risk that our child would be short. She insisted that we should have a scan, and if the baby was affected, we should have a termination. Furthermore, she told us that if the technology had been available twenty years ago, that’s exactly what she would have done.
As she told me later, Lucy was stunned by what Susan said: “I was devastated by that, I was just absolutely devastated. I was shocked.” The implication of my mother’s comment was that she would rather not have had a disabled baby. She would rather not have had me. For some reason, at the time I did not take her statement to heart. I don’t understand why I was not offended. Perhaps I was used to my mother’s periodic failures of tact. Perhaps I gave her the benefit of the doubt, thinking that she did not really mean what she was saying. Perhaps I realised that she was trying to shock us and provoke a reaction. But whatever my feelings at the time, it’s significant that I blanked the episode from memory, only to be reminded of it, decades later.
My mother directed most of her pressure at Lucy, knowing that I was too stubborn to accept reality. Lucy did not know about disability, she could not imagine how it was to be the mother of a disabled child. “You don’t know what it’s going to be like”, Lucy remembers her saying. “You don’t know what it’s like to watch your child in the playground, and nobody will play with them because they’re too different.“ I had no memory of this exclusion myself. In fact, I am not sure it ever happened. But the image remained with Lucy. A few years later she would walk past the playground at Valley Road Infants School, Sunderland at break time, and see her own child standing alone, with no one to play with. She would remember Sue’s words, and wonder whether she had been right.
It was not only my parents who disapproved. One of my college friends sent us a postcard from Condom in France, saying that I should be using contraception, rather than bringing into the world a child whose parents might well have soon separated, and who might be disabled into the bargain. Some people thought us brave, some people thought us reckless, and some people thought us mad.
Doctors also looked askance. Not our lovely local GP, Richard Irons, who even supported Lucy’s determination to have a drug-free home birth, but the consultants at the Rosie Maternity Hospital in Cambridge, who were disturbed by our willingness to proceed with a pregnancy that might be affected by disability. We had ultrasound scan after ultrasound scan, until they were certain beyond doubt that the foetus had the short limbs of achondroplasia. They wanted us to know, even though we had made it clear that the prospect did not concern us.
I remember the long silence in the examination room once they had announced the diagnosis. The atmosphere was tense. Lying on the bed, Lucy clammed up and said nothing. The doctors made no explicit suggestion, but there seemed to us to be a definite expectation that we should have a termination. Perhaps they felt they had to make it extremely clear that it was an option which they would not discourage; that they thought it would have been very understandable; that it was a choice that most people in our position would have made. But Lucy did not allow them any chink, and we faced down the waves of disapproval.
At the time it was an irritation, but in retrospect, the medical attitude seems shocking to me. None of the clinicians would have known as much about achondroplasia as I did, who’d lived with it for more than twenty years, and whose father had lived with it for fifty years. They had no reservations about making it clear to a couple, one of whom had the condition, that it was advisable not to have a baby with achondroplasia. The experience shaped my views about genetics, and about the medical profession, for many years to come. It made me sceptical of the rhetoric about non-directive counselling and informed consent. I suspected that lurking under the new terminology was the same old fear of having a disabled child.
The pregnancy went smoothly. We boycotted the antenatal classes, and neither did we have serum screening, let alone amniocentesis. Lucy did yoga, and I rubbed almond oil onto her belly to prevent stretch marks. Faced by the food cravings of pregnancy, she started eating Marks and Spencer’s prawn sandwiches, and we both slipped away from veganism. She became highly sensitive to smells, and spent her days obsessively cleaning the house.
Lucy was determined to have her baby her own way, and labour started early on a sunny morning in June 1988. We sat around and partied. As the day wore on, and things failed to progress, the midwife became anxious. Finally, we agreed to go to hospital after all. A consultant came to have a look, and said, rather aggressively, that if the baby wasn’t born soon, he’d do a Caesarean section. We were bad patients, the couple who had rejected screening and didn’t want a hospital birth. We were given a room where the midwife could look after Lucy, and while she squatted on the floor and howled, I hovered in the background with Bach rescue remedy and a camera. The journey in the ambulance had shaken things up, and the labour went better after we got to hospital. Shortly after dawn, our daughter was born, a small dark slimy bundle of life. A few hour later, a friend came in her car to take us home, and Lucy walked out of the hospital carrying our child, still barefoot, leaving a trail of blood along the corridor. My father made another entry in his diary:
Lucy’s baby born at 0640 ♀ 7lbs affected.
Once it was clear that we were going to keep the baby, my family had rallied round. My father gave me the deposit for a terraced house off Mill Road in Cambridge. A few days after the birth, my parents arrived to play the role of enchanted grandparents. Achondroplasic babies are small, chubby and particularly sweet, like tiny cherubs. Ours won the heart of everyone who met her, that day and for years afterwards. She was the sweetest of children.
We had one more battle to fight with my mother, and that was over her name. Lucy’s favourite reading was the green-jacketed feminist novels published by Virago, and she had recently enjoyed the memoirs of Ivy Litvinoff, an English woman who married a Bolshevik commissar in the 1920s. We decided on Ivy as our daughter’s name. My mother was horrified. She felt Ivy was a most unfortunate choice, a low class name, and highly unsuitable for her first grandchild. My father did not help matters by reminiscing about Ivy Benson’s All Girl Band from the 1940s. For weeks afterwards, my mother would ring up every evening and read out a new list of girls’ names to me. “How about Sarah? That’s a nice name. What about Rosie? Have you thought of Rosie?” She refused to concede that Ivy was Ivy and we weren’t going to budge.
* * * * *
Not everyone was enamoured of our baby or approving of our choice. I became a postgraduate student at King’s College, Cambridge in 1989. I used to wheel my toddler daughter in her buggy through the college from time to time. One day, a Fellow of the College, watching us pass, said to the people he was sitting with in Bar: “How could Tom have gone ahead and had a child, knowing that there was a strong probability that she would be disabled?”
When my father was born in 1927, my grandfather reacted with horror and shame to a birth that was completely unexpected. When I was born in 1966, my parents were well prepared, understood the science, but may still had a sense of regret. When Ivy was born in 1988, we already knew she was short, and did not think there was anything wrong with that.
Throughout the twentieth century, the dominant view was that people had a responsibility to avoid disability. The notion of eugenics – good birth – was coined by Francis Galton, cousin of Charles Darwin, and became a craze in the first half of the twentieth century, and perhaps explains some of my grandfather’s guilt. But even after the science of genetics took over, eugenic sentiments were common. Francis Crick, the English half of the partnership who discovered the structure of the DNA molecule said in 1963 that parents should require a licence before they were allowed to have children. His colleague James Watson later wrote that “seeing the bright side of disability was like seeing the bright side of poverty”.
Now, all pregnancies are tested for common conditions such as Down syndrome and spina bifida, and ultrasound examination can reveal many other developmental disorders. In 1999, one of the two scientists who pioneered In Vitro Fertilisation technology, Professor Robert Edwards, said “ In the future, it will be a sin to have a disabled baby”. Growing knowledge creates increasing pressure to take responsibility for avoiding disability. Biomedical progress results in more pregnancies being tested for more conditions. The gene responsible for achondroplasia was cloned in 1989, the year after Ivy was born. It prompted scientific speculation that the condition could be eliminated once and for all.
Contemporary society, which now accepts most other kinds of difference – respecting women, and people from minority ethnic communities, and gay and lesbian people – has not yet embraced disabled people as part of the diversity of the human population. The dominant view remains that disability is an unfortunate tragedy which would be better off prevented. Often, genetics is seen as science’s best hope of achieving this goal, and thus improving the quality of the population. It’s the same sentiment that prevailed in the eugenic era, the major difference being that our grandparents did not fully understand the biology and lacked the diagnostic tools to predict the condition of a future child.
It is natural for parents to be shocked by the birth of disabled child. But disability need not translate into poor quality of life. The lesson of my father, myself and my children is that disability need make no difference at all. Of course, some forms of impairments are more severe than others, and it is understandable that families, and doctors, should wish to avoid lives which are brief, painful or filled with suffering and restriction. But disability is a hugely diverse experience, ranging from trivial differences to serious difficulties. Social barriers are often a more serious problem for disabled people than their impairments themselves. Most families quickly come to terms with their disabled child, and most disabled people lead good lives.
While I welcome advances in medical and nursing care which can minimise illness and impairment, it will never be possible to get rid of all disability. Neither genetic screening, nor public health, nor therapeutic interventions will eliminate impairment. For example, as people live longer, so they are increasingly affected by degenerative conditions such as macular degeneration and dementia. At the other end of life, neonatal medicine now regularly succeeds in saving premature newborns, half of whom will have impairments. While approximately two per cent of births are affected by impairment, twenty per cent of the population are disabled, usually due to accidents, ageing or disease. Disability is part of the human condition. In other words, perhaps we should learn to accept it, rather than striving to eliminate it at all costs.