The Four Walls of My Freedom (10 page)

Learning and Belonging

A sense of belonging is a powerful ingredient of wellbeing. Jim and I have positioned our family in the company of supportive family and friends over the years, but strangers have sometimes been cruel. Once, after a particularly painful procedure at Great Ormond St. Hospital in London, I took Nicholas to McDonald's for a treat. Nicholas was about seven years old and was happy and excited to be having his meal with its plastic prize tucked in the bag between the burger and fries. I was feeding Nick as I chatted away to him, giggling about the nurse who did not understand his gesture of sticking his tongue out when she cooed innocently, “Now, that wasn't so bad was it?” I didn't see the waiter approach our table, but there he was, red-faced, standing beside us. “The elderly couple at the corner table have complained about you being here and feeding your son,” he said, obviously embarrassed. I looked over at these white-haired people who were glaring at us, grim-faced, angry and challenging. “They said that you shouldn't be in a public restaurant. I am going to move them to another table. I wanted you to know in case you heard them talking. I am really, really sorry.” I looked at Nicholas who was looking particularly adorable that day, dressed in a designer outfit for the hospital visit. I took Nicholas' hand and said in voice loud enough for the couple to hear, “Nick, those poor people have no love in their hearts. Perhaps their mummies didn't love them enough. We need to pray for them immediately because they are very sad.” I took Nick's hand in mine and actually bowed my head, saying a short public prayer as Nick laughed at my nerve.

Many times I have been told that Nicholas, as a wheelchair user, represents a health and safety hazard in case of fire. On that basis, he has been barred from entering ice rinks, bowling alleys and restaurants. The times that Nicholas has been refused a place at school are too many to write about. The common refrain though, was “I am sure your son's needs could be much better met at another school; one that has more resources.” Throughout Nicholas' educational career, there have been wonderful successes and spectacular failures. Those welcoming schools where teachers and students celebrated Nicholas' talents, finding ways for him to participate in every aspect of school life, lit the pathway to community belonging for our whole family.

In 1992, when Nicholas was three and Natalie was just six months old, we moved from Ottawa to London, England. Jim had accepted the position of political director at the High Commission and we looked forward to our first international adventure with the children. For Nick, I had great hopes for Conductive Education, a therapeutic method of teaching children with movement disorders how to be functionally independent, and I knew that there was an excellent preschool in the city that specialized in these techniques — the Hornsey Centre.

Nicholas' arms and legs were very stiff, especially when he was excited. He had no purposeful movement of any kind. He would arch his head and trunk backwards and could not, for example, sit independently without falling. Having sampled Conductive Education in Ottawa with our therapist Rosalind, I knew that proponents of the system frowned upon the usual assistive devices, such as wheelchairs, preferring to use simple wooden furniture with lots of built-in grab bars. I arrived at the Hornsey Centre with three goals for Nicholas: to sit independently, to play with a toy by himself and to transfer without assistance from a chair to another seat nearby. In his two years at the centre, Nicholas never actually achieved any of these goals, although he did make some progress in the sitting department. He learned to hold a drinking cup and feed himself a sandwich, albeit with lots of messy spills. I loved the idea of Conductive Education because I believed in the power of learning to overcome not only ignorance, but disability. It spoke to the strong determination to do with intellect and willpower that I was sure could be inspired in Nicholas. At that time, I still suffered from the delusion that my will could overcome the powers of nature that drove Nick's limbs to be stiff and dysfunctional. I couldn't accept that no therapy, surgery or equipment could halt the twisting of Nick's spine or the tightening of his muscles.

The Hornsey Centre was boot camp for kids with cerebral palsy. The staff weren't rude, but they were results-oriented and Nicholas looked like a difficult case. The best students were those with athetoid or ataxic cerebral palsy, those for whom balance and uncontrolled movements were more problematic. For them, learning to rely on grab bars to achieve independent mobility and to perform other basic functions of daily life was achievable and constituted a real reason to celebrate a hopeful future. Parents who had just one child and were able to incorporate rigorous practice of the method at home were championed by the school administration. One evening, I decided to attend a parent meeting to view a home movie made by one young mother. The principal introduced the film as a fine example of what all parents should do with their child at home. We all watched her little girl being coaxed by her parents to incorporate her school learning into each part of her day at home. “Say with me Sarah, I lift my left arm up. Up…up…up.” In went Sarah's left arm into the shirt sleeve. “Now hold your sock and pull. Hold…hold..hold. Pull…pull…pull.” Sarah pulled up her socks. Outside in the park, Sarah was shown peddling her own tricycle, later at home, feeding herself a biscuit. In the bathroom, she brushed her teeth as she sang, “Brush your dirty teeth, brush your dirty teeth, brush your dirty, brush your dirty, brush your dirty teeth!” I always thought “dirty” was an odd adjective for teeth, but eventually I became so used to this tune that the up and down movements associated with the song became second nature to everyone in my family.

As I watched the film, my cheeks began to burn and my chest felt tight. As the film ended, the centre's director stood and thanked the young mother. Then she turned to the rest of us and said, “This is an excellent example of what can be done if one is determined to do the work and implement at home what your children are learning at school. Your children's progress is up to you.”

I was furious. I felt threatened, defensive and humiliated. Just the day before, I had dropped in unannounced to peek at Nicholas from the darkened observation room with its one-way mirror. Nicola, the teacher, was trying unsuccessfully to persuade Nicholas to feed himself. His sandwich kept crushing in his palm, then falling to the floor. There was nothing left that could be held or even eaten; it was just a dense, dirty ball of squashed bread. “Nicholas is
NOT
doing well today.” The teacher glared at Nicholas as she made this pronouncement to her colleague, “Not well at all!”

I opened the door and stepped into the classroom. Flustered, Nicola greeted me much too cheerily and made a show of helping Nicholas take a bite of his dessert. I began to think that perhaps Conductive Education was not the panacea to address disability that I thought it was. Andras Peto, a Hungarian innovator, had devised Conductive Education in order to teach children with disabilities in his country how to walk and perform simple, daily tasks unaided. Without these abilities, children in Hungary were excluded from attending school. A method created for reasons of belonging and inclusion was beginning to make me feel very alone. Nicholas wasn't making progress and it felt like my fault.

About this time, another mum at Hornsey told me that her daughter was having speech therapy at a place called the Cheyne Centre. More and more hallway chat seemed focused on a miracle worker called Helen Cockerill who used a technique called Special Time to get non-verbal children talking.

I managed to get an appointment at Cheyne and we arrived at the appointed hour in front of a Victorian brick building that faced the river Thames. Looking up, I groaned at the number of steps leading up to the entrance doors. “It's a listed historical building,” the receptionist apologized. “The heritage department won't let us install a ramp.” Like every other parent coming to the Cheyne Centre, I carried Nicholas' wheelchair up the stairs, then returned to the car, scooped Nicholas up in my arms and ferried him to the lobby. A young woman in jeans and a blonde ponytail greeted us with a broad smile and a friendly Yorkshire accent. “Hello, chicken,” she said to Nicholas, “I'm Helen.” She led us downstairs to a basement warren of peeling hallways until we reached a door decorated with picture symbols resembling hieroglyphics. The small room was filled with toys, and Nicholas arched his back and kicked out his legs, as if pumping his knees would make the play come faster. Helen sat cross-legged on the floor with Nicholas looking out from the crook in her legs. I left the wheelchair in the hallway as Helen began speaking directly to Nick. “Your playtime here is called Special Time, Nick. I will help you, but we will play as if I am not really here. You will tell me what you would like to play with and I will help you. I will count you down to start. Ten…nine…eight…” The room silent now, Nicholas began to slowly look around. His eyes lit on a Lego train set. Helen said quietly, “You are looking at the train set, we'll go play with it. The train goes Choo! Choo!” Nicholas smiled. “You're smiling, you want more.” As I watched Helen and Nicholas in a bubble of intense listening pleasure, I thought how wonderful, how seductive and how rare it is to have such complete attention of another person. No wonder Nicholas was smiling!

Later, when we got home, I plopped Nick down into the armchair in our family room and flicked on the television while I tidied up the toys and dishes that we had abandoned on the floor earlier that day. “Ahhh,” said Nick. “What?” I asked, not bothering to look at him. “Ahhh,” he repeated, now looking at the lamp on the table beside him. “What — you want me to turn on the light?”

“Ahhh.” I turned on the lamp and returned to scraping some crumbs off the carpet. “Ahhh,” said Nicholas again, looking hard at the lamp. “What, you want me to turn
OFF
the light?”

“Ahhh!” said Nick, giggling now. “Ahhh! Ahhh!” Light on! Light off!

I telephoned Jim at the office and cried, “Nicholas is talking! He told me to turn the light on and then to turn it off!” I was laughing, I was so happy.

When I think of this experience in the context of the Capability Approach, a couple of personal truths are revealed. When we arrived in London, I had been clear and unequivocal on the central capability of independent physical function for Nicholas. He was a toddler and action is a toddler's modus operandi. The fact that he did not achieve the goals that I set for him offered me an early lesson in humility where parenting is concerned. But it was also a lesson in understanding the Capability Approach. Perhaps independent physical function wasn't so central to a life Nick valued after all. Would Nicholas have experienced a communication breakthrough if he hadn't been to Conductive Education boot camp where self-reliance was the imperative? Probably not.

But our experience of throwing out old truths and finding new pathways for growth was made possible by choices that could be considered mistakes. The fact that the Hornsey Centre staff valued functional goals for Nicholas over and above the integrated goals of “Nick in our family” turned out to be harmful to me as a mother. The wellbeing of children and their parents is so deeply interconnected that usually parents cannot separate the two. Certainly, I couldn't. In the case of children with disabilities, this extreme closeness lasts much, much longer into adulthood. When a mother experiences a quality of love that is desperate and feels hopelessly inadequate at times to meet her child's needs, her sense of wellbeing is very poor. I used to wonder why, in aid poster images of African mothers holding their starving babies, these mothers were never looking at their offspring. When I felt that I was failing Nicholas, I averted my eyes from him too. Systems in place to assist children with disabilities must examine their programs through the lens of family. Parent supports, or lack of them, must take into account their rebound effect on children.

The fact that Hornsey staff measured success by standards other than Nicholas' own personal bests could have been harmful to Nick. But Nick has always been a resilient and positive person. His response to angst-ridden teachers was to fall off his bench laughing, so that he found himself often banished to the hallway, still chuckling. I sized up our situation and saw that Nicholas had learned to be an actor in his own life. He hadn't learned to play with a toy by himself, but he had learned to initiate, to imagine and to be more fully human. After Conductive Education, a report with “smiles a lot” would never be in the cards again. And certainly, the independent spirit combined with the early communication skills Nick gained in these early years of life made belonging and social ease much easier for him later on.

After two years at the Hornsey Centre, I decided to put Nicholas back into a regular neighbourhood school setting in London. I knew about a school in nearby Hampstead that had already admitted a young boy with disabilities similar to Nick's. An elevator had been installed in the building, and the boy's mum told me she'd managed to secure a range of supports. I filed an application for Nicholas and proceeded to wait for a reply. A letter finally arrived. I ripped it open, only to find the familiar words: “We are sure that Nicholas' significant needs could be much better met elsewhere.” I tried to reason and then plead with the head teacher, but to no avail. I was angry and desperately worried about our future without a plan. I hadn't counted on being turned away. Carol Greenaway, our educational psychologist and kind co-strategist, came with me to visit a couple of special schools on offer. In the parking lot after the visit, we looked at each other over the car roof and shook our heads simultaneously. When we were informed by the teachers that parents were not welcome to make unannounced visits to their children at school, we knew these places were out of the question for Nicholas. “God knows what they get away with!” Carol exclaimed and I couldn't have agreed more.