SPEECHLESS FACILITATING COMMUNICATION FOR PEOPLE WITHOUT VOICES Rosemary Crossley Dutton N.Y. 1997 2 1. And the walls came tumbling down 1 2. Not being able to talk doesn't mean you've got nothing to say 28 3. Cabbages and kings (ABI) 36 Derek 40 Carolyn 45 Michael 53 3. Just a gnat bite – Penny (Encephalitis) 58 4. Getting the Message 76 5. How do I say I love you? (Autism) 87 Emma 91 6. Can you read without moving your lips? 115 7. All you can do is wring your hands – Tara (Rett syndrome) 122 8. What's the product of 3 times 21? (Down syndrome) 132 Jan 133 Heather 141 Fiona 143 9. Eat now, pay later – Fred (PKU) 153 3 10. The Trouble with Babble (Autism/I.D.) 165 Ralf 167 Wayne 172 11. Eventually We’ll Know – Jill (Autism) 176 12. No way in (Receptive Aphasia) 196 Bridget 198 Terry 201 13. On the Frontline - The Controversy about FCT 210 14. This is where we came in 222 15. Thoughts of Voices Never Heard 229 The Emperor’s new clothes 230 How did we get here from there? Amy 234 So where do we go from here? 238 Bibliography and references 241 SPEECHLESS 1. And the walls came tumbling down On the floor in front of me was the most extraordinary child. About the length of a four-year old but skeletally thin, her body was in unceasing motion. The muscles and tendons on her arms and legs stood out like cords. As she lay on her side her legs were bent backward, her arms were pushed out behind her, her head was pushed back between her shoulders, and her tongue moved in and out continuously. Unthinkingly I asked the nurse who was showing me round the hospital "What’s wrong with her? " "That’s Anne McDonald. The spasm is getting worse and she’s getting harder and harder to feed. In six months her head will touch her heels and she’ll die. " "Hello, Anne." I said. She gave a skull-like grin, but her tongue didn't stop moving. It was 1974. I was twenty-eight, I had an Arts degree, and had trained as a computer programmer in the days when the largest data processing system in Australia had 90K of RAM and occupied an entire room. Having discovered that computer programming was deathly dull and that I was very bad at it I had opted out and gone to teach at a center for children with cerebral palsy. After two years there I was now starting work at St. Nicholas Hospital, Melbourne, a Mental Health Authority institution for children assessed as severely and profoundly retarded. Anne was thirteen and had lived there for more than nine years. I went to St. Nicholas Hospital when I was three. The hospital was the state garbage bin. Very young children were taken into permanent care, regardless of their intelligence. If they were disfigured, distorted or disturbed then the world should not have to see or acknowledge them. You knew that you had failed to measure up to the standard expected of babies. You were expected to die. Anne McDonald has the athetoid form of cerebral palsy. When she entered St. Nicholas she could not talk intelligibly, walk or feed herself. When she fought her way out the hospital 14 years later she SPEECHLESS 2 still could do none of these things. Only one thing had changed. She had found a means of communication. Never seeing normal children, we were not sure what they were like. Where did we fall short? In your ugly body it was totally impossible that there could be a mind. Vital signs showed that your title was 'human' but that did not entitle you to live like normal children. You were totally outside the boundary which delineated the human race. My job at St. Nicholas was to set up play groups for 160 residents living in four wards of forty cots. To picture the hospital, think of a Roumanian orphanage with everything painted white. The children lacked food, clothes, medicine, therapy, toys, and love, and this neglect was effectively concealed by the trappings of the clinic - high white walls, polished white floors, gleaming stainless steel, crisp white sheets. If the children were pale, the nurses said, that was because they were sick, not because they hadn't been outside the wards for months. If they were thin, that was because they were sick, not because they were starving. The children could do nothing, and so the staff developed goals of their own that were unrelated to the children. Cleanliness, internal and external, was god. Internal cleanliness could be gauged by the bowel book, which served as the ward bible; external cleanliness was measured by the number of bottles of methylated spirits emptied each week in polishing every stainless steel surface to a mirror. Nurses were discouraged from cuddling children. A crying child needed to be punished for its own good, so it would learn to accept the absence of affection and be happy. Punishment consisted of locking the crying child in a small dark storeroom. The hospital defined a happy child as a quiet child. Silence was not only golden but sullen; the nurses never saw the looks we gave them when a child was put away. .... Time was SPEECHLESS 3 when the strongest emotion I felt was hate, and hate makes you strong. Tender emotions were dangerously softening. Implacable hatred of the whole world which hunted handicapped children into middens like St. Nicholas twisted my relationships with people for years. There was almost no therapy - the sole physiotherapist struggled with an overwhelming case load. Anne's file showed she had received physiotherapy only for one three-month period in the sixties, and the muscle spasms resulting from her cerebral palsy had never been addressed. Anne spent her waking hours lying on the floor because there was no chair suitable for her to sit in, lying on her side because by 1974 her body had arched backwards into a half-circle, with the diameter of the circle being drawn by the line of her arms extending rigidly behind her. She couldn't bring her head or arms forward without help, and she rarely saw her hands or feet. When I arrived there were no organized play activities, no educational programs, and most children left the hospital only once a year for the annual picnic at the beach. One dedicated physiotherapist treated as many of the children as she could. With her support I tried to relieve the terrible monotony of hospital life by putting up posters and mobiles and setting up activity programs. In this Siberia of children waiting to die, life was an intrusion. We tried to introduce fingerpainting. The nurses complained because the children got their hands dirty, the cleaners complained because the children got the floors dirty, and when we took it all outside the gardener complained (and I am not making this up) because the children got the grass dirty. After some arguments with the hospital bureaucracy I was able to arrange for volunteers to take some children, including Anne, across the road in a motley assortment of prams and pushers for occasional walks in the park. In the ward the floor and walls were covered with white vinyl. The cots were covered with white sheets. You either lay on the floor or in a cot. The only floor I knew was vinyl, and as far as I knew all surfaces were like vinyl or like sheets. I had no memory of ever having felt any other, and so I processed all the SPEECHLESS 4 pictures I saw as being representations of vinyl at foot level and sheeting higher up, with differences of color. When Rosie took me outside I was amazed at the feel of grass - in pictures it just looked like a green vinyl floor. One of the activity programs brought together Anne and nine other socially-responsive children with severe cerebral palsy for a session of pre-school activities, one afternoon a week. As all the children in the group had been labelled severely or profoundly retarded1, and none had ever attended school, a pre-school program seemed about right. Anne appeared to enjoy all the activities and always tried to participate as much as her body allowed. I had just come from spending two years teaching at a day center for people with cerebral palsy where communication was always an issue. This was before the development of speech synthesizers and laptop computers, and the most complex communication aid in use at the center was a wooden board carved with the letters of the alphabet which hung on the back of an adult’s wheelchair. Some students who could use their hands, or who had sufficient control of their head movements to point accurately with a head stick, had been taught to type. For those who couldn’t type and who had no intelligible speech the only option was to signal ‘yes’ and ‘no’ while their families and teachers played Twenty Questions to find out what they wanted. Students who couldn’t control their head movements to nod and shake signalled with whatever movements they could control. At the day center Janet, a teenager with tongue-thrust - repeated involuntary tongue protrusions caused by brain stem damage - had used her handicap to communicate, clamping her tongue between her teeth to signal ‘yes’ and holding it back for ‘no’. Anne reminded me of Janet, and so early in 1974 I told her about Janet’s signals and suggested she use them.