My Book

Extract from my autobiography – My Life in My Hands

The staff stood behind the tables and watched us to make sure we used our artificial arms. They had high hopes for our artificial limbs and thought that if we would only practice with them and use them regularly we would soon be picking up even the most delicate items without breaking or damaging them. But we all instinctively knew those sorry bits of metal were never going to fulfil their hoped-for potential. They were just too crude.

At mealtimes we were expected to use our artificial limbs to eat with and they kept an eye on us to make sure we did. And we obeyed their directive – up to a point. My technique was to play with my food, nudging it around the plate and trying to look as if I was about to bring a portion up to my mouth. Then, when I thought nobody was looking, I would dive downwards and take a gulp of food with my mouth. Of course I couldn’t do that every time. Occasionally I would manage to push the lever in my shoulder in the right way at the right time and it would clamp onto a sliver of food which it crushed flat. Even more rarely I managed to bring the crushed sliver up to my mouth and push the lever the other way just in time for the morsel to fall into my mouth. But for most of us that ideal scenario of fluid and skilful adaption to our artificial extensions never happened.

If anyone had walked into our dining room during a typical mealtime they would have encountered a real-life slapstick routine unfolding in front their eyes. They would have seen some of us chasing the same bit of food round and round of plate without ever getting hold of it. I never managed to eat any of my hot meals while they were still hot for that reason. Others would have succeeded in grabbing a piece of something but then would whack themselves in the chin or eye when they tried to lift it up to their mouths. Yet others would accidentally flip their food down the table or across it into someone's lap or face. One occasion when my gas powered arms were being particularly unruly I managed to pick up and flick a full bowl of cornflakes in a big arc over my head. When I looked round behind me I saw that it had splattered against the window ten feet away and was slowly sliding down the glass. For a long time the nurses thought we were doing it on purpose. They had great faith in those artificial limbs.

It took a few years but by the time I was seven or eight the authorities had accepted that the experiment wasn't working and they more or less gave up trying to get us to use artificial arms. At meals they grudgingly began to allow each of us to eat our food in the best way that we knew. So there was sister Stobard standing in front of me with a blue mat with a big hole in it. She claimed that I'd used my pincers and the open and shut movement to pick away the rubber and make the hole. I agreed that somebody must have done it but it wasn't me. She didn't believe me though. And that is another thread of Chailey life, the way that the staff never ever believed us It didn't ever matter if I was innocent of some charge or other. All the staff assumed that I had done whatever it was they were accusing me of. And it wasn't just me. Although the staff could play the favourites game they still had the attitude that we children were always in the wrong by definition. On this occasion I hadn't interfered with the mat but she just didn’t believe me. So I was punished, end of story. Naturally Sister Stobard’s outstanding ability as a supervising nurse and purveyor of justice did not go unrewarded. She eventually became Head of Nursing at Chailey.

QEB, the building where I lived, at least the first one I can remember, had two parts; an inner section and an outer section. The inner was warm and had central heating. It was where the more delicate types like the Spina Bifidas lived. And for us toughies, as we were called, there was the outer part which didn’t have heating and was freezing cold in winter. Us toughies in the outer section were accommodated in large dormitories, twenty or thirty to a room, with our metal cots laid out in rows - cot, locker; cot, locker; cot, locker - great big tall cots with great big tall sides, so it was like being in a cage. I wasn’t able to get out on my own. Somebody had to unlatch the side and get me out.

At night they used to put me inside my cot with the high sides, never in any underwear for some reason, just a little nightie, and in the morning they’d wake us all at six o’clock , while it was still dark outside. The nurse would sweep through the dormitory in her starched uniform with her assistants tagging along behind her and making sure that everyone woke up.

I had to wait my turn for the bathroom – there were thirty of us – so a nurse picked me up out of my bed and plonked me down on the floor I remember the freezing the shock as my bare skin came up flat against the hard cold concrete. All around me cockroaches were running about, just a few, but I didn’t mind them as much as feeling my bottom and legs slowly going numb with the cold. Eventually someone would get me and take me to the bathroom to wash my face and clean my teeth. And then it was off to breakfast which we all took together in a huge refectory room.

- from My Life in My Hands, publ. Simon & Schuster

The book is translated and published in the following countries: Germany. Autobiografie einer Optimistin. Publ. Blanvalet Italy. La Vita in Pugno. Il coraggio di una donna diversa. Publ. Corbaccio Also Sweden and Korea. I will let you know about other countries when I hear about them.

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