Micheline Mason
Shining a light on inclusion

Touch, Our First Language

My bones broke like glass, but no one knew, so being born caused me much pain. Clumsy but well-meaning people pulled me out of my mother and maybe slapped me to start me breathing. Two broken legs, a slap, but still I knew I was loved. I knew because I was given to my delighted parents who saw only my shock of red hair, my tiny nails, my button nose, all those things that parents wonder over each time the miracle of life occurs. They showed me their delight by holding me close, stroking my face, letting me grasp their fingers, smiling at me with joy on their faces.

I must have been in great discomfort, but still I felt safe as I was taken home to be shown off to my older sister waiting for her new playmate. Pain made me want to stay still and not be moved. I screamed each time I was lifted or nappies were changed. After four days of this my parent’s anxiety took them and me back to hospital. X-rays, a diagnosis, and everything in my short life changed.

I can still feel the withdrawal of the world from me. The stepping back. Grief replaced delight, fear replaced intelligence. The white-coated professionals seem to take ownership of me on behalf of the State. I was placed in a cot. My parents were sent home. Nurses were instructed not to handle me for fear of causing further injuries to my bones. They did not consider injuries to my heart, my soul.

Touch is our first language. Strong hands are made to hold their own infants. Warm bodies meant to provide safety. Soft breasts meant to provide sustenance. All else is distant – sounds, sights; our new-born brains still have to learn to make sense of them, but touch we already know. Its comfort is instant. From that solid foundation we start to piece together the information flooding in from our other senses. We learn where we end and the world begins. We learn who is there for us. We learn where we fit in. We can learn to survive hunger, pain and fear without long-lasting damage, if held in a healing embrace.

What did I learn lying all alone in my cot, in the false safety created by my isolation? Something had gone terribly wrong and I had to be punished. Everything I needed was taken away. Warmth, closeness, love, the sensation of skin upon skin. The world had stopped communicating with me.

I can remember only darkness and a sense of danger. My physical pain I could no longer locate as coming from within. It seemed to flood me from the outside as soon as I moved with no holding restraint. My cries brought nothing but anger from overwrought staff. I learnt to keep quiet. That was the only way to survive. Still and quiet was safe. A habit of a lifetime was set in.

A grim beginning but punctuated with golden moments in which the human instincts won through. The nurses who forgot the rules and made their caring fun. A flurry of talcum powder and giggles. Visits from my parents growing increasingly confident that I was not all bad news. My Dads sparkling green eyes seeming to say that it would be alright, he would return for me, and eventually he did.

Human beings need to be touched, not only when we are small babies, but all through our lives. It is a rational need. My early deprivation has only partially healed, and the healing has occurred through human contact. Living at home with little technological support, I had to be carried everywhere. I loved it. My best memories were of riding on my Dads’ shoulders, or tucked on his arm as we went off to the library, or the shops, or to the swings.

There are many kinds of touch - stroking, caressing, massaging, washing, drying, hugging, carrying, wrestling, a whole language of which we are barely aware. I remember when I had my own daughter and she, having the same impairment as myself, also suffered the unavoidable pain of broken bones. She was not hospitalised. Instead of any medical intervention she demanded a warm hand placed firmly over the part of her body which had been injured. With this touch she was visibly able to relax and to sleep the healing sleep she needed. The hand had to remain in place all day and all night. The instant I thought I would try and move she would go tense and her wail would start. We had to recruit and train volunteers to share this vigil from our circle of close friends. I was surprised at how many seemed to instinctively understand why this was so important. As a result my daughter has never learnt to connect pain with isolation and fear, and our friends have learned how their hands can help a child to heal. Her recoveries were always remarkably fast.

It seems to me that this instinctive knowledge is being smothered under a weight of misunderstanding, fear and exploitation. The massive profits to be made out of our needs have fuelled the development of vast industries - the sex industry, the beautification industry, the health and fitness industry, and the fashion industry to name but a few. All these have served to corrupt the language of physicality, to rob it of its original meaning. Everyday we are bombarded with images that link sexuality with almost everything we can buy. This is deeply confusing to us. It is rare to see images of physical closeness outside of this context and so the world has no framework to explain or validate the many ways we could have of using our bodies to bring comfort or healing to each other. From a very early age we are conditioned to believe that the only way to give and receive physical closeness is in a sexual relationship. I recently overheard my six year-old great niece being taunted by an adult about her ‘boyfriend’ at school, whilst she became increasingly upset. Already her innocent friendships are being distorted by the unawareness of adults.

The fear of sexual abuse from adults has greatly added to this. No one now can touch a child, except their own parents, without feeling the world is questioning their motives. If a child is not receiving all the physical touch they need at home, and many are not, it is becoming increasingly rare for that need to be met elsewhere. A friend of mine who was a primary school teacher in the 1960s told me that everyday before playtime she would tell all the children who wanted a hug to line up before they went out. She always had a queue and often the first in line would run back and join the end in order to get another. This she said Would never be allowed nowadays.

Partly because of this, men are an endangered species in early years provision, and what a loss. Absent fathers are already painful realities for many children and for them the chance to make positive relationships with men in settings outside the home should be one of the main advantages of going to playgroup, nursery or school. In the UK only 1% of early years workers are men. What is this teaching young children? All the love and care, fun and energy that men can bring into the lives of young children is being denied to them. Men’s physical strength can be the promise of safety for so many children. Their rough and tumble games can be the only place for some children to test out their boundaries, take risks, or feel there is anyone there. How will boys learn to be gentle and caring if they see these roles only ever performed by women? How is it affecting both girls and boys to be raised in a culture which sees men as predatory, as potentially dangerous?

Disabled children as always are at the sharp edge of this changing culture. Although my story may seem extreme, and certainly conditions for children in hospital have changed quite dramatically over the last twenty years, many disabled children still suffer from the loss of physical closeness from others. The impairments themselves, if they reduce the child’s ability to move independently, may make initiating physical contact difficult, or impossible. Any contact will have to be initiated by the other, if at all. (Take a moment to imagine what this would mean in your life now.)

Then disabled children may be subjected to physical touch, which is unpleasant or painful, such as the stretching exercises common in physiotherapy, or all the medical interventions involved in surgery. The memory of these experiences can leave fear and confusion which get in the way of welcoming any kind of physical closeness.

Children with high-level support needs may have these met by several different people, none of whom love the child and none of who have been chosen by the child. This is very different to having those intimate tasks done by someone who is trusted by the child – someone who is part of their emotional life. And when this all happens out of sight, in separate isolated and segregated settings, the potential for abuse becomes very real. Just as for all children in Care, institutional life is never safe.

Even when disabled children are not segregated, when they are living at home and going to their local mainstream schools or clubs, new waves of fear seem to endlessly attack the human relationships for which we are fighting so hard. One of the latest cruelties to sweep the country is the widespread implementation of ‘No Lifting’ policies for children who cannot move themselves – even very little ones. A directive from the National Health and Safety Executive designed for manual workers lifting heavy weights at work has been translated into policies in all child-care settings. The need for manual handling must be reduced to a minimum and done using mechanical hoists and equipment where possible. Living, breathing children have become loads. Already deprived of human contact, even this small avenue for closeness has been cut off in the name of risk management.

When my daughter was growing up, I couldn’t lift her myself. I had to teach many people how to lift her, and she became a true expert at this herself from a very young age. With the added complication of brittle bones, her safety depended upon it. We both learned that there are people who cannot lift because of their own impairments, and people who cannot be trusted to lift because they did not know how to listen to a child’s instructions. But we also learned that most people are only too willing to be useful in this way. Some even went to gyms to strengthen their bodies so they could manage the very precise lifts that had to be done when she had a fracture. I was surprised at how many people had to be taught how to lift safely, without hurting their backs, and how little thought they had ever given the subject. How great it would have been if lifting was considered a necessary life-skill, taught at school alongside first aid and cooking. How much better even, if people were taught how important it could be to carry a child out into the world, or into your own living room.

If you met me now, you probably would not suspect how my early life began. You would have to know me very well to know that after more than fifty years, I am still not sure the danger is over, where I end and the world begins, if there is any thinking person alive on the planet except myself, if any important relationship will last, or whether I dare let even those who love me most hear me cry. It is still not easy to write this down or even admit it to myself. The long-term effects of the loss of giving or receiving human touch can affect your mind forever. We need to start to think about reclaiming the language of touch, and reclaiming our bodies as the wonderful resource they can be to each other as we struggle to be fully human.

© Micheline Mason March 2004.

Available as a pamphlet from The Alliance for Inclusive Education.