Magazine article New Internationalist

My Body: 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 [Severely Disabled Woman Decides to Have a Child]

Magazine article New Internationalist

My Body: 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 [Severely Disabled Woman Decides to Have a Child]

Article excerpt

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. …

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