It’s not always easy to claim your body as your own – especially if you are pregnant or disabled.
Micheline Mason was both. But she forged a way.
My body was mine for only four days of my life. Although my body hurt for those four days, my head and heart were happy. I had a mummy, a daddy, a sister, a home, and I was loved unconditionally.
Unfortunately, my mother started worrying that something was wrong. She noticed that my crying seemed a bit too much, too desperate, and always louder when she picked me up or moved me from one place to another. She took me back to the hospital and asked them to have a look.
When she handed me over to the radiologist on that fourth day, she passed over more than she could ever have known. Once on the table the invisible X-rays defined my life forever – ‘injured’, ‘brittle’, ‘congenital handicap’, ‘untreatable’, ‘probably fatal’. ‘Leave her here with us,’ they said. ‘Prepare yourselves to lose her.’
I now no longer lived at home. I no longer had a mummy to cuddle or feed me, or even look at me. I had a label, a diagnosis, a ‘genetic fault’ a ‘poor prognosis’. I had become hospital property along with my notes, removed from everything that could give my life meaning.
When my parents were given all this ‘terrible’ news, they did not have the arguments to put up a fight, so they did what they were told and went home without me. But before they left they smiled at me and this smile said all I needed to know. That they were not convinced that the doctors had got it right, and although they were going now, they would come back for me. Because of this I decided to live and eventually the hospital staff realized that they had been a bit hasty in their death threats. They handed me over to my parents to look after, almost like a foster child.
The words the medical profession used to describe my body, without a moment’s reflection as to how they would destroy my sense of self, were ‘deformed’, ‘abnormal’, ‘misshapen’, ‘severely handicapped’, ‘fragile’, ‘invalid’. No-one said ‘pretty’, ‘attractive’, ‘unique’, ‘sensitive’, ‘warm’, although I was also all those things, I realize now.
Once a medical photographer came to my bedside. I had combed my hair and put on my sweetest seven-year-old smile in preparation. When he put the screens around my bed and asked me to take off my nightdress, I was dismayed. When he took close-ups of my arms, my legs, my back without once including my head, I was shocked beyond measure. He said they were going into a book for medical students. If he had asked me, I would have said no. I could not bear the thought of it. They would learn nothing about me from such pictures.
If you are disabled, the medical profession defines the parameters of your life, even the kind of education to which you are entitled. Because my body has a tiny difference in the gene which makes collagen, I spent the whole of my childhood imprisoned by medical reports which, in effect, allowed mainstream schools to discriminate against me. They said that I had to be educated ‘otherwise’ than in a school, because it was not fair to ask a school to take on the responsibility of such a ‘fragile’ child. Interestingly, the reason they gave me was that they had to protect me from the ‘cruelty’ of the other children in the school. As I had always found other children generally much kinder and more protective than most adults, I found this explanation pretty pathetic.
It seems so natural now that pregnant women are screened for ‘abnormal’ foetuses, that babies are born in hospitals, that doctors should have the power they do, that it is hard to imagine that this is a modern phenomena, only existing in highly developed, technologically obsessed, profit orientated societies.
In Britain it was only after 1913 that doctors were given by the State the role of identifying and separating ‘defectives’ from the rest of the population. Several categories ranging from ‘cretins’ to ‘moral defectives’ were created. It was recommended that such people be separated from society, and from the opposite sex, otherwise we would ‘out-breed’ people who were normal and the whole of society would degenerate.
Children were not spared this ‘vetting’. Parents were seen as a big problem because they often persisted in loving their disabled children. Hospital staff were trained to try and stop the ‘bonding’ before it began. They moved new-born disabled babies to separate nurseries and urged parents to ‘leave them behind to be put into care’. ‘Go home and have another baby’ was the wisdom of the time.
The breaking of relationships between disabled and non-disabled people has been a national policy for nearly a century. Reclaiming myself from this legacy has been a difficult process. In some ways it was fortunate that the hospital made such a mistake in saying that I would probably die. We, as a family, learnt early on that ‘experts’ are fallible; that all future life is uncertain and open to the influence of individual or collective will. I began to believe that life could actually be all right. Perhaps more significantly, I began to believe that I was all right.
It was a long journey from being ‘cut up’ by a medical photographer to being confident enough to consider becoming a parent. Even now I am not sure that I would have made the decision from ‘scratch’. In the event, the only decision I had to make was whether or not to continue with an accidental pregnancy. I had deliberately avoided asking for ‘advice’ from any medical person as to the wisdom or not of my becoming a mother. I knew all I would hear would be their fears and prejudices. I had found out, though, that any child I had would have a 50-per-cent chance of inheriting my condition and I’d spent several years working out what I thought about this. By the time I was faced with a real possibility I knew that a disabled child’s life would have at least the same value as my own, and she or he therefore had every right to live it. I also thought I could protect a disabled child better than most from the oppression she or he would be bound to face. I was much more concerned about myself and my circumstances, including the fact that I would become a lone-parent – and of this I was truly afraid.
Yet I had often been afraid in my life – and I had never let it get the better of me. From the moment of decision, a protective mechanism seemed to enfold me. I surrounded myself with people who could and would be positive about this new life within me. I avoided the doubters and sceptics as much as possible. If I could not avoid them, because I was related to them, or they were my local doctor, I took a ‘bodyguard’ with me. I smiled at them all. I did not ask for reassurance from them, I just needed their skills, their co-operation. I told them that they must prepare for the possibility of a disabled baby; not to bother me with any form of ‘screening’; and not to share their worries with me. I am sure that it was my presenting them all with a fait-accompli that enabled me to side-step the negative reaction which has been the experience of many of my disabled friends.
I am only one metre tall and I am not straight or symmetrical anywhere. In this light, it was amazing that ‘What! You are too small to have a baby!’ blurted out by my shocked local doctor, was the only really scare-mongering remark made in the whole nine months. Looking back, most of my memories are of people being excited in some quite profound way. It was as though I was defying their own demons, their own fears and self-imposed limits. Perhaps it was that ‘oppressed’ person within all of us seeing that we do not have to give in.
On my part a certain amount of bravado was involved. I was anxious about the birth and about the rest of our life together, especially when a late scan did confirm the fact that the baby had indeed inherited my condition of brittle bones. My tears and panics were kept for a very small group of friends who could listen to me without ‘joining in’. In fact, I think I became a bit ruthless as the pregnancy progressed, pruning the list of acceptable visitors to rather a narrow selection. But I felt it was a necessary form of self-defence, and only for a short period of time.
The last six weeks of my pregnancy, and Lucy’s birth, were very closely monitored. I was asked to come into hospital for that time and I was surrounded by women who were worried about their own pregnancies, each with a story to tell. I, with my attempt to remain calm and confident, became a sitting target. I began knitting classes by my bedside in order to try and distract them, but it was not wholly successful as a tactic.
The consultant however was always encouraging and reassuring and in this I know I was unusually fortunate. ‘Nature is wonderful!’ he said to his students as he showed them how the baby had taken up a sideways position instead of the expected up-and-down one. This had prevented most of the things about which he had been concerned, that my breathing would become restricted, or the baby would feel squashed and decide to be born early. It did cause another problem of how they were going to get her out, but this he seemed to treat as an interesting challenge rather than an enormous difficulty. The positive nature of his approach only really came home to me when he shared with me his dilemma of which angle to make the incision – vertically or horizontally. The easiest for him would be a vertical cut, but this worried him because it might mean I could only have two children, whereas a horizontal approach would enable me to have four!
For the first time in my life I felt as though the medical profession was using its highly developed skills to help me achieve something I truly wanted. In fact without these skills neither of us could have survived. I cannot help but feel grateful that I live in a ‘rich’ country where such help is available.
My long stay did mean that half the hospital knew about us and wanted to see this baby as soon as she was born. I remember the sound of the mobile incubator wheeling along from the Special Care Baby Unit, with a beautiful bright-eyed baby, only two hours old, and an entourage of nurses, friends and domestic staff, laughing, admiring, planning little gifts and asking if they could bring their relatives to see her. I contrasted this with the sense of tragedy and sorrow that had surrounded my early days, and wondered what had made the difference. It certainly could not be explained simply by the fact that it was 32 years later. I know that disabled infants are still greeted with shock and misery most of the time. Was it because I was able to welcome her completely, including her impairment, that it allowed everyone else to follow suit? It was true that for me it was the unknown factors of our life ahead which scared me, not the known hand of cards with which I had been dealt. Brittle bones to me was a known scenario, but to most people it is not. To most people the reality of any impairment which is not one you have yourself is a leap in the dark. In the absence of close relationships with disabled people, which is still true for the majority of the population, the dreadful legacy of the past with its eugenic undertones thoroughly distorts our view of disability, leading us endlessly back into the circle of fear, exclusion, ignorance, fear.
Lucy is now 14 years old, a very strong young woman in her own right. But her world is still unsafe, her place in it still conditional on the judgement of medical professionals. Many of her disabled peers are not by her side in mainstream society, but are still in segregated institutions of all kinds, put there by the non-disabled world. We both still need our circle of friends to remind us that our battle is not just for us, but for them, for their humanity. All real relationships are two-way things. Perhaps if we put our resources into building relationships instead of replacing them with ‘things’ we would not be afraid of the idea of dependency, of human need. We would see it as a gift.
Micheline Mason is a writer and disability campaigner. Her books include Disability Equality in the Classroom and Nothing Special.