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.
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 of temperament, an at times overtrusting nature, a love of singing, a lack of the finer motor skills. But of chromosomal evidence for the condition there was none.
Anna as a child and as a young person was not identifiable, visually, as in any way impaired. Her learning difficulties were not obvious to the eye. This was both a blessing and a curse. No leeway was given her, no tolerance extended to her by strangers. Jess, who quickly became expert in spotting the cognitive and behavioural problems of other young people, found this at times a difficulty. Should she smooth Anna’s way by excuses, or allow her to make her own way through the thicket of harsh judgements and impatient jostlings that lay before her through her life? She tried to stand back, to let Anna make her own forays, her own mistakes, but occasionally she felt compelled to intervene and explain.
Anna loved her mother with an exemplary filial devotion, seeming to be aware from the earliest age of her own unusual dependence. As our children and the other children we knew came to defy us and to tug at our apron strings and to yearn for separation, Anna remained intimate with her mother, shadowing her closely, responding to every movement of her body and mind, approving her every act. Necessity was clothed with a friendly and benign garment, brightly patterned, soft to the touch, a nursery fabric that did not age with the years.
In those first years, before the educational attainments of her peers began to demonstrate a noticeable discrepancy, Anna remained part of a ragged informal community of children which accepted her for what she was, prompted by the kind example of their parents. The parents admired Jess for several good reasons, and they liked little Anna, so smiling, so unthreatening in every way, so uncompetitive. Ollie, Nick, Harry, Chloe, Ben, Polly, Becky, Flora, Stuart, Josh, Jake, Ike, Tim and Tom tolerated Anna easily, willingly. They indulged her and let her join their games, according to her ability.
But the games grew more complex, and Anna was left behind.
Anna could not understand why she could not learn to read, as the other children did. What was this game called ‘reading’? Picture books and stories she loved, particularly repetitive stories and nursery rhymes with refrains, which she could memorise word for word, and repeat back, expressively, and with a fine grasp of content, to her mentors. ‘Sing a Song of Sixpence’, ‘Polly, Put the Kettle On’, ‘Curly Locks’ and ‘Incey Wincey Spider’ were part of her considerable repertoire. But letters remained a mystery. She learnt to draw
A
for Anna, but produced it in a wobbly and uneven hand, and was slow to get to grips with
n
.
Jess noticed that although Anna could sing her way through ‘One Two Buckle My Shoe’, ‘One, Two, Three, Four, Five, Once I Caught a Fish Alive’ and other counting rhymes, she could not count well without the aid of the rhyme. She needed the mnemonic. She found numbers on their own confusing. She would never, Jess suspected, Jess knew, become wholly numerate.
Jess and I didn’t talk much in those early days about Anna’s condition, but of course I was well aware of it, as were we all. A kind of delicacy prevented me from asking direct questions, and I waited for whatever Jess wished to divulge. My children—but this story isn’t about my children, I haven’t the right to tell their stories—my children were friendly with Anna, and she spent quite a lot of time with me and my two boys. I was working part time then, and Jess and I looked after one another, covered one another. My boys had known Anna since she was born (one is two years older, one more or less exactly the same age), and for years they didn’t really notice there was anything different about her. And as they began to notice, so they gradually began to adjust their interactions with her, looking out for her when there were games she couldn’t manage, taking extra care crossing the road. They used to take her to the corner shop with them on Saturday mornings to spend their weekly pocket money in a binge on Refreshers and Spangles and Crunchy Bars and Smarties. They negotiated with the temperamental grey-faced heavy-smoking old man who kept the till, and made sure she got back the right change. I didn’t have to tell them to do this. They knew.
Maybe we shouldn’t have let such little ones go along the road and over the zebra crossing together, but we did. They all learnt their Green Cross Code, but I think they used to go to Mr Moran’s even before the Green Cross Code was invented.
They weren’t saints, my children, they weren’t angels, they weren’t always patient, and I remember one horrible afternoon when Ike lost his temper with Anna. It was teatime in our house, and she managed to break a limb off his little wooden puppet man. Ike was very attached to that little puppet man, whom he called Helsinki, and he’d sometimes let Anna play with him and twist him about, but that day she screwed his arm one notch too far in an attempt to make him wave, and it came off. Ike was very cross, and called her a clumsy stupid silly girl, and snatched Helsinki back and said she could never ever touch Helsinki again. Anna’s eyes grew large with tears, and she retreated behind the enormous mahogany veneer radiogram in the corner. I intervened and said I was sure I could fix Helsinki with a dab of Superglue and I put on a record to distract them (I think it was ‘Nellie the Elephant’) and opened another packet of chocolate fingers, but Anna wouldn’t come out from the corner for quite a long time.
When Jess came to collect her, Anna was still quite subdued, and I felt miserably guilty. I didn’t know whether to explain what had happened or not. I didn’t want to betray Ike, who was such a good lad on the whole. So it wasn’t all easy, all the time. There were moments. And I never did manage to fix Helsinki properly. I couldn’t get the joint to articulate. He had a stiff arm for the rest of his short wooden life.
But Anna and Ike got over this incident, and forgave one another. Neither bore a grudge.
Ike’s name wasn’t really Ike: it was Ian, but Jake called him Ike when he was a baby, by analogy with his own name, and it stuck. He still calls himself Ike.
Jake and Ike, my babies.
Sometimes Jess and I would have a glass of wine, after these teatime child-minding sessions, and talk about grown-up matters. I would report on ethical dilemmas in the charity where I worked, or spill Whitehall secrets from my husband’s ascendant career at the Home Office, and she would tell me about whatever she was reading or reviewing, and about the thesis on which she was working. I learnt a lot of second-hand anthropology from Jess. She aired her ideas on me. I liked to hear her talk about the shining lake, the children and the shoebill, and about Dr Livingstone, whose grave she said she had visited. We were both mildly obsessed by Livingstone, then a deeply unfashionable and intellectually provocative figure. She knew far more about him than I did, but I had missionaries in my family background, and old missionary books on the family bookshelves, and as a child I had browsed through my great-grandfather’s school prize of
Livingstone’s Travels
, with its thrilling engravings of ‘The Missionary’s Escape from the Lion’ and ‘Natives Spearing an Elephant and Her Calf’. I was always interested in reports about Livingstone. We speculated about what he had really, truly believed.