"One of the measurements the Health Commission had relied on in court had been Anne's size. If she was the size of a five-year old, how could she have the intelligence of an adult? When Anne was admitted to St. Nicholas a month before her fourth birthday she was two feet ten inches tall and weighed twenty-seven pounds, roughly the weight and height of a 2-year old. Twelve years later she was three feet four inches tall, the height of an average 4-year old, and weighed twenty-eight pounds, still the weight of a two-year old. Between the ages of 4 and 16 Anne grew six inches (18%) and her weight increased by one pound (4%) as opposed to increases in the average child over those ages of one foot ten inches (51%) and seventy-eight pounds (203%). When Anne left St. Nicholas Hospital at the age of 18 she was the height of a 5-year old. She had, however, been putting on weight since I had started feeding her in 1977, and for the first time since her admission to St. Nicholas her weight matched her height.
Nonetheless, Anne's size was a problem. Shortness isn't a criminal offense, but it certainly affects the way people treat you. People with severe disabilities always run the risk of being patronized, and so do people who are significantly shorter than average. The combination of severe disability and childlike stature and appearance made it almost impossible for casual acquaintances to treat Anne like an adult.
I didn't like littleness. Everybody treated me like a baby, My tiny little body appealed to sentimentalists and drunks. They would sit next to my baby buggy and stare lovingly into my eyes. The worst ones would pat me on the head. Their breath smelt of stale beer and their hands were wet and sticky. I asked Chris to have a T-shirt printed with PAT ME AND I'LL BITE YOUR HAND OFF. I was sitting in the park wearing it when an old lady came up. She read it, said "Oh, how cute," and patted me on the head. There were also practical disadvantages; I couldn't see over the top of a table in a restaurant, for example, let alone a bar. One of the first things I did after leaving the hospital was to ask my doctors if there was any way to increase my height.Growth is a complex phenomenon, with our eventual stature the result of a complicated interaction between nutrition and metabolism, environment and hormones, combined with the growth potential we inherit from our parents. Unstimulating environments can contribute to failure to thrive, and part of Anne's growth lag might be due to that. Her parents were of average height, so her short stature wasn’t likely to be the result of inheritance. She hadn’t had a pubertal growth spurt, but then she wasn’t anything close to large enough to have reached puberty - female hormone production requires a certain body mass and some subcutaneous fat, and menstruation doesn’t start in girls who are severely malnourished. The simplest explanation seemed the best; she was small because she'd been starving.
Anne had an x-ray to see what her bone age was. The bones of children have uncalcified areas at the ends, called epiphyses, which is where growth takes place. The extent of this area can be observed on an x-ray, and matched with the average area left uncalcified at a given age. Typically the result is close to a child’s chronological age, and is in fact often used to estimate the ages of non-disabled children when birth dates aren't available. At the age of eighteen Anne’s bone age was that of a 6-year old. At puberty the epiphyses close and then no further growth is possible, but Anne hadn't reached puberty.
We were initially appalled - an 18-year old with a 6-year old bone age didn't sound like good news - but in fact this was the best news Anne could have had. Hypothetically, she had the growth potential of a 6-year old. No-one could predict what would happen in such an unusual situation, but as Anne’s height age and bone age were quite close no special treatment seemed called for. Theoretically, she should now start growing. And grow Anne did. Between sixteen and twenty-six the average woman grows by less than half an inch (0.2%) and her weight increases by three pounds (2%). Anne grew by one foot six inches (46%) and her weight increased by seventy-eight pounds (277%). She will always be slightly shorter than average, because the long bones of the legs do not grow as much in people who do not stand or walk, but she may have grown more after the age of eighteen than any other human being now alive.
When she entered St. Nicholas Anne’s height was 80% of the average four-year-old and her weight 70%.
For the next twelve years her weight and height increased only slightly, and at the age of sixteen her height was 63% of the average sixteen-year-old and her weight 24%. After that delay she entered onto a growth curve similar to that of normal growth but displaced sideways by fourteen years, and by 26 her height was 91% of the average and her weight 88%.
The bible (King James version) says at one point
Which of you by taking thought can add one cubit unto his stature?King James didn't know the half of it. In many ways it was as if Anne’s biological clock had shut down in the years immediately after her admission to St. Nicholas, and started again after she came out. Initially her growth was so accelerated that she needed several complete new wardrobes each year - a great thrill for a young woman who hadn’t had clothes of her own, much less the opportunity to shop for them.
Anne’s teeth soon started to wobble and one fell out. Horrified, and presuming that this was the result of the gum disease endemic in the institution, we rushed her to a dentist. There was nothing to worry about, he explained; it was just a deciduous tooth, pushed out in the normal way by the second tooth coming through. He looked at us very strangely - after all, why were we so concerned about a 6-year old losing teeth? Anne’s dental age was similar to her bone age, and as she grew she lost more deciduous molars. Most of these were replaced, though her dental development was not as regular as her growth curve.
Now in 1995 I’m still living with Chris and Rose, still don’t back institutions, and still play at being a student. St. Nicholas has been closed and my friends have moved out into homes in the suburbs where I can visit them. I let Rose fight new battles while I just try sitting back and enjoying freedom and friendship. Taking attendants for friends, I have made many friends, but my reputation always takes lots of work to overthrow. I seemed like a modern icon. The new attendants would wet themselves with reverent adoration, and I had to drink a rum for breakfast to show them I wasn’t a saint. I’m really not a martyr either - I didn’t choose my part. In living the role of heroine I wished I could change it for that of romantic lead.
Anne’s story is not just that of a single misdiagnosed child placed in a bad institution. It illustrates also the tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a re-evaluation of established professional practice. My failure to appreciate and extend Anne's communication in 1974 provides a demonstration of just how difficult it is for anyone with severe disabilities to change other people's preconceptions, and the limitations those preconceptions impose on their development.
The most important thing Anne has tried to teach me is not to set limits - not to judge people by appearance, or by label.
Intelligence is a concept which is due for revision. As more is discovered about the neurological impairments which affect performance both in everyday life and on IQ tests it is clear that each individual has so many different strengths and weaknesses that it is impossible to even design a test which will fit every body, much less make reliable predictions from peoples’ scores on the current tests. The important concern is not to improve the tests but to stop people being graded on any measures which can be used to restrict the rights and opportunities of those who rank lowest. Making low IQ a crime warranting imprisonment is as humane as making shortness a criminal offence. Both measurements indicate difference. The judgment that one difference warrants imprisonment and the other does not is based on prejudice about the relative desirability of particular human characteristics.
St. Nicholas, sadly, was nothing special. There were and are other St. Nicholas's around the world. Their similarity is worrying. One such institution could be explained as an aberration, but the existence of many suggests that there is an endemic human tendency to treat as less than human children who cannot speak. Our humanity to others appear to be dependent on the feedback they give us, and in the absence of that feedback we may overlook their essential humanity.
Anne got out. She got a wheelchair and grew and went to university and travelled overseas. Obviously this doesn’t make her normal - she still can’t talk, walk or feed herself - but does it make her normal for someone with that degree of physical disability? Unfortunately the answer is no. You don’t just spend 14 years of your life in a place like St. Nicholas and leave unscathed. Recovery from physical and academic deprivation is easy compared to the ongoing pain caused by the social and emotional deprivation of life in the hospital.
I rotted in St. Nicholas for 14 years, and you expect me to be a woman like any other? Do remember that I saw my friends die - over and over, time after time. In the hospital you couldn't afford friends. Kids who tired of fighting rusted away; and if you rust young you don't live to be old. I fought, and I survived - survived to wonder which of my enemies I had beaten and which I had just put away inside myself. I suffer jealously whenever Rose works with another person with a disability. What if they take her fancy and she swaps me for them? I want to be normal, to love and be loved, crisp new love, but I still prefer not to make close bonds with mortals.
Mine is the troll's motto, "To thyself be enough."
from "Speechless" by Rosemary Crossley (and me)
If you're interested in my
other work, check these out....
If you want to know what I think of euthanasia, read this.
If you want to know more about my story, read the book
Rosemary Crossley - Annie's Coming Out, Penguin Books.
It's out of print, but second-hand copies are available on Amazon
And read about the
people who are trying to stop it.
And there's my work on The
Terrible Triple C, another one of
the ways in which professionals bastardize people with disability.
If you want to know how I enjoy myself, watch this.
Here are a few links
If you want to contribute something yourself, give some
money to DEAL; they're working to see
that nobody is left without a voice.
Back to the home page and start
Warning: there is quite a bit of overlap between these
articles. When you take as long as I do to spell a sentence you
use it as often as you can, and the hell with repetition.