The Pure Gold Baby. Margaret Drabble. Читать онлайн. Newlib. NEWLIB.NET

Автор: Margaret Drabble
Издательство: Ingram
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Жанр произведения: Контркультура
Год издания: 0
isbn: 9781782111115
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upon one’s offspring. The prevailing philosophy was of laissez-faire, and we believed in the noble savage, the blank slate. Original Sin had been banished, and we held that, if nurtured by kindness, natural goodness would always prevail. Our chief pedagogue Dr Spock told us that babies usually knew best, and that mothers should trust them, even if they wanted to live on a diet of beetroot or burnt toast.

      Motherhood was being deprofessionalised, but not deskilled. Trained nannies were out of fashion, because they were too expensive for the new generation of struggling working mothers. Trained nannies were for unemployed rich mothers, in those days. Improvisation was in favour with the middle classes: au pair girls, amateur and cheap nursery groups, reciprocal child-minding.

      This was lucky for Anna and her mother.

      It is not surprising that Jess and some of her closer friends began to be deeply interested in the subject of birth defects, childhood illnesses and inherited abnormalities, despite their faith in the natural goodness of infants, and despite Jess’s necessary assumption that Anna’s paternity had nothing to do with her condition. This was a period when important discoveries were being made about the chromosomal basis of Down’s syndrome (not that Anna was thought to have Down’s syndrome), and certain inherited genetic diseases were being routinely tested for at birth, not always with the mother’s knowledge or consent. (It was at this time that Jess’s mind began to go back again and again, involuntarily, almost dreamily, not unhappily, to those little agile club-foot children by the shining lake.) Vaccination was then, in the sixties, a major ethical issue, though autism, with which it was later to be (as we now think erroneously) connected, was not as yet a frequent or popular diagnosis.

      Autism is now, in the twenty-first century, a hot topic. Down’s syndrome is not. You can’t make much of a career from studying Down’s syndrome. It doesn’t get you anywhere. It’s low key and unsensational. You can maintain, you can provide care, you can campaign to alter attitudes and perceptions, you can argue about the ethics of termination. You can admire Lionel Penrose for his research on the chromosome at Colchester, for his enlightening discoveries and enlightened Quaker principles, for his respectful attention to, and affection for, his patients.

      You can respect. You can abort. You cannot cure.

      Most of us were amateurs, struggling on with motherhood and learning as we went, but Sylvie had studied medicine and qualified as a general practitioner before her marriage to the dashing and increasingly absent Rick Raven, so we used to listen to her as our neighbourhood expert on medical matters. She wasn’t practising at this time, when her boys were small, but she would take up her career again later, and specialise in the urinary tract. We didn’t know then that she was going to do that, and neither did she.

      To vaccinate, or not to vaccinate? This was hotly debated by a new generation of highly educated mothers who wished to apply intelligence as well as instinct to maternity. It was a divisive topic. Sylvie Raven was in favour, but some of us were not. To maim one’s healthy child while aiming to protect it seemed a tragic choice, and yet we knew such things could and did happen. It was for the good of the wider community to vaccinate (and of course we all thought we had social consciences), but how would the wider community help two-year-old Andrew Barker, brain-damaged by a jab that went wrong? He had gone into spasm, his back had arched, he had cried out, and he had never been the same small happy child again. This was a worse fate than Anna’s, Jess had to believe, and the sense of guilt endured by his mother was, although unfairly, greater.

      Even Sylvie Raven conceded that.

      We were surprised and a little shocked when Michael and Naomi decided to have their son Benjamin circumcised, and to have the job done by an unhygienic old rabbi in the living room, not by a doctor in a hospital. This too seemed to us like a gratuitous assault on the body of an infant.

      We’d never even heard of female circumcision then.

      We didn’t know much about genetics, but we did know that abnormalities ran in families. Ollie’s little sister had an extra digit on her right hand, an oddity which didn’t seem to worry her or her parents very much, though they did eventually arrange for its surgical removal at Great Ormond Street Hospital. They said that at first she missed her little extra thumb, but then she forgot about it, unless reminded. Her grandmother had had the same anomaly One, two, three, four, five, once I caught a fish alive … most counting games work on a five-finger base. It’s not a good idea to have six fingers.

      None of us took thalidomide, but we knew mothers who had. It was one of the pharmaceutical discoveries of our time.

      This was the last generation of British children to suffer routinely from such common complaints as measles and whooping cough. Diphtheria was on the wane, and so was scarlet fever, now so rare that when one of the children at our nursery group contracted it the doctor did not recognise it, never having seen a case. It was diagnosed, correctly, by the elderly untrained minder of the neighbourhood, Mrs Dove, who did the Monday and Wednesday shifts at the playgroup wearing an old-fashioned flowery cotton overall. It was greeted with delight by the medical students at the Royal Free Hospital as a lucky sighting, a historic anomaly The students made a great fuss of hot and prickly little Joe, with his red skin and his impressive fever of 105 degrees: he was a throwback to another age, and his bright blood, rocking in its tray of little test tubes, was a miracle of liquefaction.

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      Anna’s condition did not seem to answer with any precision to any known descriptions. Like the shoebill, she was of her own kind, allotted her own genus and species. She did not suffer from any metabolic disorder, of either rare or frequent incidence. Brain damage in the womb or at birth was not ruled out, but could not be confirmed: Jess’s labour had been long, but not unduly long, and the period of gestation apparently normal. (There were, of course, no ante-natal foetal scans in those days, no anxious calls for the dubious risks and safeguards of amniocentesis.) An obvious genetic cause was sought in vain. It is not known if or at what stage Jess proffered the identity of the Professor to the assessors, but, as far as she knew, there was nothing in his family background to suggest that a clue lay in that remote nomadic Nordic hinterland.

      Jess’s attitude towards the Professor and his paternal obligations was extreme and bizarre. She wished to disconnect him from the story, and she appeared to succeed in doing so. It is more often men that wish to disconnect sex from procreation. Jess was a female pioneer in this field, although maybe she did not regard herself in that light.

      It was easier to ignore the consideration of paternal genes then than it would be now. We did not then consider ourselves held in the genetic trap. We thought each infant was born pure and new and holy: a gold baby, a luminous lamb. We did not know that certain forms of breast cancer were programmed and almost ineluctable, and we would not have believed you if you had told us that in our lifetime young women would be subjecting themselves to preventative mastectomies. This would have seemed to us a horrifying misapplication of medical insight, but we would of course have been wrong. We had heard of Huntington’s chorea (‘chorea’ isn’t a word you can use now) and cystic fibrosis, but we thought of them as rare and deviant afflictions. Most genes, we thought, were normal. We did not believe in biological destiny. We thought we and our children were born free.

      You may pity us for our ignorance, or envy us for our faith.

      So Jess did not closely pursue genealogical explanations for Anna’s state. Her investigations were desultory. In her own heritage she traced a distant case of cerebral palsy, a couple of suicides and, at the beginning of the twentieth century, a child with Down’s syndrome (then called Mongolism, a term, like lobster claw and chorea, now obsolete). The condition of this child was easily explained by the advanced age of his mother at conception, a factor discovered by Jess on one of her covert visits to Somerset House. (The story of the Down’s syndrome boy had been handed on through family lore, through the paternal line in Lincolnshire, and reinterpreted by Jess: Jack Speight had been ‘a bit simple’, ‘a backward boy’, a young man ‘who couldn’t do much for himself’, and he had died in his thirties.) Anna’s condition did show some behavioural affinity with that of many Down’s syndrome children – an innate happiness