Family Emotional Economies and Disability at Birth

By Barbara Brookes

As a so-called ‘obstetric antique’, having my second child at 35 (in 1990) and my third at nearly 41, I was twice offered, and twice took, the opportunity to have amniocentesis. Both times I felt like a failure. Would I not cope having a child with a disability? In the event I wasn’t forced finally to confront that decision, but the complicated emotions surrounding disability at birth came to the fore through the procedure.

These kinds of emotions are rarely discussed, although, I suspect, widely felt. I had occasion to reflect on them further in the late 1990s when a mature student — a woman in her sixties who I will name Helen — told me (her History professor) a piece of personal history that made me (by then, the mother of three young sons) want to weep. It was the intensity of an individual’s story, not an archival encounter, that demanded my historical attention.[1]

Helen’s recollections of seeking a diagnosis for her infant’s profound disability and the difficult decision eventually to institutionalize him and emigrate to the other side of the world, horrified and moved me. Because of the depth of my emotional response, the story stayed with me. Some years later I made arrangements to interview my former student in the hope of making historical sense of her experience in its context of the 1950s.

As a medical student in late 1940s London, Helen became pregnant.[2] She dropped out of medical school and gave birth to a son, born prematurely at eight months’ gestation. The boy failed to develop normally and Helen found it difficult to get help. When she remarked to her general practitioner that her son did not seem to be developing normally, the doctor told her that “medical students were often rather stupid this way and often thought there was something wrong when there wasn’t.” At around six months, concerned that the infant’s eyes weren’t focusing at all and that he might be blind, Helen turned to her parents. They arranged to take the child to an ophthalmologist. Unlike the GP, this specialist confirmed Helen’s diagnosis that the child was practically blind, adding that the optic nerve hadn’t developed. Helen determined to learn Braille and organize her life to assist her son, but further diagnoses were to follow.

At eighteen months old, Helen took her son to a Harley Street pediatrician without her husband’s knowledge. The expert diagnosed microcephaly and that nothing would change. He told her she had a choice between two courses of action: either she give up her own life in order to look after the child, or have the child admitted to a psychopedic hospital. The pediatrician recommended “the second because I don’t think it’s a useful way of spending your life looking after a child who is never going to really improve.”

And so Helen put her son’s name down for institutional care and he was eventually accepted in 1953. Helen and her husband felt terrible taking him to the hospital where they visited him weekly. A friend suggested they consider emigrating to New Zealand, an idea that took root and they left the UK, a decision which shadowed the parents in their new life. Helen’s mother-in-law visited her grandson every week until, aged six, he died from pneumonia.

The themes of Helen’s story – the special responsibility of the mother and the importance of medical advice in the solution she sought – can be found in the lives of many parents of disabled children in the mid-twentieth century. Mothers were caught between the loving protection they felt for their children, the expectations of family members and a social climate that suggested they “get on with their lives,” forget their disabled child and (often on a doctor’s recommendation) commit the child to an institution.

I found further, perhaps unique sources to make sense of Helen’s experience. Medical students studying public health in the fifth year of their course at the University of Otago, in Dunedin, New Zealand, were encouraged to explore the impact of, what had become known as, “intellectually handicapped” children in families. The results of their research in the community were recorded in reports archived by the medical school. The studies are small-scale and it is hard to assess how representative they are, but nevertheless, they provide invaluable insights into private traumas. A visit from a medical student interested in disability, who wanted to discuss circumstances with these parents may have opened up an unusual opportunity for families (mothers particularly as they were most likely to be interviewed because they tended to be home to provide primary care to their child).[3] Mothers often lacked a narrative to make sense of their experience – or an audience willing to listen – which meant it lay outside everyday cultural understanding.

A child born with developmental impairment should not be considered as a ‘problem’ in isolation. Parents’ circumstances were crucial to the child’s future, but mothers and fathers might disagree about where that future lay. The different reactions of individual parents to the birth of a mentally impaired child could put the marital relationship under great strain. Whether or not to keep a child at home might be one of the points of contention, with fathers more likely to initiate institutionalization.^[4] In 1950s New Zealand, most medical professionals were men, and tended to identify with fathers, sometimes discounting the views of mothers.

Mothers in such positions have been the focus of a number of historical works, but questions about parents, children and health have received far less attention. Leslie Reagan’s Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America (2010) is ground-breaking in this regard. Reagan examines the “specter of tragedy” wrought by new medical knowledge in the 1960s that rubella caused serious birth defects.[5] She further develops Rayna Rapp’s insight that women are today’s “moral pioneers,” negotiating the choice of abortion in the face of information about abnormalities derived from tests such an amniocentesis.^[6]

Before such testing was possible, it was the moment of birth that would often reveal the prospect of a child’s future. But it was not always easy to tell even then, and the hope of a ‘normal’ life faded as developmental delays began to become apparent. At a time when fathers were routinely excluded from the birthing room, mothers anxiously asked their health professionals, “Is the baby all right?” A 1962 medical student dissertation revealed that mothers might have been the first to be told that the infant was not all right, at times in an “abrupt,” “blunt” or “cruel” manner.^[7] Perhaps in hope to avoid the mother’s emotional response, doctors might break the news to the husband, “man to man”, who would then inform his wife.^[8] Obstetricians could also be falsely reassuring and leave it to the child welfare nurse responsible for postnatal visits to deliver the information.^[9] Such difficulties, because unexpected and tragic, often became unspeakable and, as a consequence, families became socially isolated.

Other people’s reactions could quickly convert the pride of new parenthood into an unspoken shame. Mothers were the ones more likely to interact with the healthcare system and the local community. They could be on the receiving end of remarkably cruel attitudes toward the disabled. In the 1962 medical student study, for instance, one mother was “abruptly” informed that her newborn “had ‘no brain’ and would ‘never be any use.’”^[10] The medical student studies suggest that New Zealand mothers had to cope as best they could with unhelpful responses from professionals, friends and acquaintances.

Relations between couples could be severely strained too: the nuclear family could implode under the weight of a child’s disability. At a time when companionate marriage was promoted as an ideal, a husband might resent the amount of time his wife devoted to a child who deprived him of her company. In a 1972 survey conducted at Otago Medical School, one father refused to countenance his wife’s wish that their child with Down’s syndrome accompany them on holiday.^[11] Another father of a severely handicapped child refused to acknowledge his newborn for three weeks. He gradually came to accept this child and a second with a disability, but “blamed the mother” for the children’s handicaps since her family had “a history of mental deficiency.”^[12] Someone was often blamed and parents bore this guilt in all sorts of ways.

Helen’s husband thought their child was damaged “because of some of the things that he had done in the war”.[13] A 1951 guide to bringing up ‘crippled children’ noted mothers’ guilt at their child’s disability. “I wonder whether it was because I went out too much before he was born?” said one mother about her son. ^[14] “I suppose I was too fond of dancing when I was young,” said another. “I wonder if I’ve been too selfish?” was also apparently a frequent question.[15]

Two mothers reported their suspicion that their babies had delayed development, but found that their general practitioners dismissed these claims. In both cases, the physicians sent them home with a “Don’t worry, my dear” and “We doctors can pick these children at a glance; your baby is perfectly normal.” Yet the professionals were wrong.^[16] In general, when severe developmental problems were diagnosed in the 1950s, doctors often recommended institutionalization and even those children with less severe problems were sometimes institutionalized. A key factor in the decision was “the ability of the mother to cope” if a child stayed at home.^[17]

The impossible task of being the perfect mother became even more fraught when a woman was faced with a child who had a variety of unforeseen needs. The clichéd female trait — a desire to “lavish affection on the helpless” — became a subject of criticism when her attention was directed to a “handicapped” child, making her “blind” to the “important needs and rights of her other children.”^[18] A view that so-called “normal” children in the family would suffer if a disabled child remained at home was widespread and some children were raised unaware that they had an institutionalized sibling.[19] The demands of a disabled child were thought to detract a mother’s attention to her other children’s detriment, as if families had a closed and limited circle of emotional energy.

Historians have begun to respond to Catherine Kudlick’s challenge in 2003 that an examination of disability – just as crucially as an examination of gender, race, and class – can shed brighter light on central questions about our past, such as “what does it mean to be human?”^[20] An historical approach allows us to see how ideas about health are closely tied to reigning conceptions of “normal development”.

I am interested in the emotional turmoil of families when the hope implicit in the birth of a new baby turns to sorrow, and how this is influenced by responses from the medical profession. David Cameron, now the British Prime Minister, said in 2004 that realizing his eldest son, Ivan, was severely disabled hit him “almost like mourning – the loss of something – mourning the gap between your expectation and what has happened.”^[21] Six-year-old Ivan’s death in 2009 was marked in the English Parliament and occasioned an outpouring of sympathy for the Cameron family. The Camerons’ willingness to acknowledge their son’s condition signaled a new era in the visibility of childhood disability, a step away from the shame that had existed in both the United Kingdom and many of its former dominions in the twentieth century.

Barbara Brookes is Professor of History at the University of Otago, Dunedin, New Zealand. She gave a version of this paper at the Social History of Medicine Conference on ‘Medicine and the Emotions’ at Queen Mary’s, London, 2012. Part of a wider project on shame in the twentieth century, a more developed version appears as “Cherishing Hopes of the Impossible: Mothers, Fathers, and Disability at Birth in Mid-Twentieth Century New Zealand” in a forthcoming collection entitled Bodily Subjects: Essays on Gender and Health 1800-2000 (Montreal: McGill-Queens University Press), edited by Tracy Penny Light, Barbara Brookes and Wendy Mitchinson (December 2014).

[1] Emily Robinson, ‘Touching the Void: Affective history and the impossible,’ in Rethinking History, 14:4 (December 2010) 503-520.

^[2] Interview with H.A. Dunedin, New Zealand, 7 September 2006. Transcript in author’s possession.

[3] In one of the studies, which involved 20 families, the father was present in six of the interviews. K. C., “A Comparison of Institutionalized and Home-reared Mongol Children,” 1972, 11.

^[4] A.M.G. “A Survey of Families with I.H. Children in Institutions and at Home,” Preventive medicine dissertation, University of Otago Medical School, 1962, 41.

[5] Leslie Reagan, Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America (Berkeley: University of California Press, 2010).

^[6] Rayna Rapp, Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America (New York: Routledge, 1999), 306–11.

^[7] A.M.G., “A Survey of Families with I.H. Children,” 44.

^[8] Ralph Winterbourn, Caring for Intellectually Handicapped Children, (Wellington: New Zealand Council for Educational Research, 1962), 39.

^[9] A.M.G., “A Survey of Families with I.H. Children,” 18–19.

^[10] A.M.G., “A Survey of Families with I.H. Children,” 29–30.

^[11] K.C., “A Comparison of Insitutionalized and Home-reared Mongol Children,” Preventive medicine dissertation, University of Otago Medical School, 1972, 30.

^[12] A.M.G., “A Survey of Families with I.H. Children,” 8.

[13] Interview with H.A. Dunedin, New Zealand, 7 September 2006.

^[14] Millicent Kennedy and H.D. Somerset, Bringing up Crippled Children: Suggestions for Parents, Teachers and Nurses (Wellington: New Zealand Council for Educational Research in association with New Zealand Crippled Children Society, 1951), 76-77.

[15] Kennedy and Somerset, 76-77.

^[16] S.L.M. “The Intellectually Handicapped Child,” (Preventative medicine dissertation, University of Otago Medical School, 1974), 4.

^[17] Winterbourn, Caring for Intellectually Handicapped Children, 15.

^[18] Winterbourn, Caring for Intellectually Handicapped Children, 35.

[19] S.B.C. “The Families, the Doctors, the Community and 14 Intellectually Handicapped Children,” (Preventive medicine dissertation, University of OTago Medical School, 1966), 13.

^[20] Catherine Kudlick, “Disability History: Why we need another ‘other’,” American Historical Review, 108 (June 2003), 764. On parenting and intellectual disability see Janice Brockley, “Rearing the Child Who Never Grew: Ideologies of Parenting and Intellectual Disability in American History,” in Mental Retardation in America: A Historical Reader, edited by Steven Noll and James W. Trent, (New York: New York University Press, 2004), 130-164.

^[21] Alistair Jamieson, “David Cameron on son Ivan: ‘We’re going to get through this he’s lovely,’” The Telegraph (25 Feb 2009), http://www.telegraph.co.uk/news/4804307/David-Cameron-on-son-Ivan-Were-going-to-get-through-this.-Hes-lovely.html.

Tags: #amniocentesis, #disability, #down'ssyndrome, #historyofemotions, #historyofmedicine