The Four Walls of My Freedom Read online

  Reinders astutely points out that “what she expresses and affirms is not a life that has the choosing self as its object. The choosing self is precisely what in her view had to die in order for the new self to rise from its ashes like a phoenix.”21

  It is a strange paradox that in order to be free, the mother of a child with severe disabilities in our society has to relinquish the choosing self. I can remember thinking more than once, “Okay, I give up. I give up on imagining that I have a life. I am a servant, not a master. I will be still. I will watch and listen as I wait for Nicholas’ next crisis.”

  It is ironic and paradoxical that the key to surviving the experience of caring for someone as dependent as my son means giving up on freedom of choice. The capabilities of my family cannot be measured on the same scale as others — it is part of our job as people who love someone who is very dependent to redefine happiness and achievement.

  Every parent of a newly diagnosed child with a disabling condition will undoubtedly be handed a parable by Emily Perl Kingsley. Kingsley began her career as a writer for the children’s television show Sesame Street in 1970. In 1974, she gave birth to a son, Jason, with Down syndrome, and it was her experience that led her to write “Welcome to Holland”:

  I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

  When you’re going to have a baby, it’s like planning a fabulous vacation trip — to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

  After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

  “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

  But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

  The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

  So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

  It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

  But everyone you know is busy coming and going from Italy...and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

  And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

  But...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.22

  I believe that Amartya Sen’s challenge is for all those in Holland to find value there and for all those in Italy to value Holland’s goodness. If we accept that diversity is a good thing, then we must break down borders between those two “countries.” No one should live without knowing Rembrandt.

  CHAPTER TEN

  Nicholas and Capability

  Every mother can imagine being her child. In a sense, this is what loving mothering is made of — a constant imagining of being her child. A mother puts a sweater on her child because she feels cold.

  As Eva Kittay said: “I propose that being a person means having the capacity to be in certain relationships with other persons, to sustain contact with other persons, to shape one’s own world and the world of others, and to have a life that another person can conceive of as an imaginative possibility for him or herself. It is a definition that brings our relationships (real and imaginative) with others to the centre of any conception of personhood.”23

  So, let me set the stage for imagining Nicholas in his full and glorious humanity. I will begin by describing what possibilities in his life circumstances he requires in order to be fully human. Generally speaking, there is a tacit understanding in our family of an expectation that we can and should do something constructive and positive with the circumstances of our lives. Our challenge is to convert the disability experience into something we call a good life. In this department, Nicholas leads the charge.

  The Capability Approach gives us a framework for understanding how this conversion might occur, even against all odds. Nicholas has two central capabilities aside from those he shares with his able-bodied peers. The first capability is to be free from pain. I would argue that a great many people with long-term care conditions, including the elderly, share this capability with Nicholas. Pain is a messy, frantic business. Like extreme poverty and illness, it has the capacity to cause great misery. As such, I will call it an injustice. When someone is in extreme pain, everyone tries to help. Individuals and state services become involved as everyone weighs in with possible solutions. Our family’s efforts to control Nicholas’ pain with the assistance of health and social care authorities reveal how the Capability Approach applied individually and collectively provides some sensible mapping clues for others in a similar situation. Sen maintains that justice can be achieved by removing injustices, one at a time. I have said that for Nicholas, pain is an injustice. But our experience of trying to alleviate his pain sometimes caused other injustices. Now, we have finally achieved a relatively pain-free lifestyle for Nicholas — one that is very reduced, and yet very rich.

  The other capability I wish to explore is Nicholas’ ability to pursue his activities of life “as if” he did not have a disability; that is not to say that Nick thinks he can achieve the same functional goals as his peers — it is more about how others speak to him and see him in the course of his day. Nicholas has a strong “stick on the ice, elbows up” kind of male ego. The self he presents to the world is tough, funny and completely unsentimental. Sometimes new people will meet him and mistake his smile for sweetness or worse, simple-mindedness. For Nicholas, balancing good manners while putting people straight is challenging, and it often falls to friends and family to keep his ego intact.

  To understand both these capabilities and how they apply to Nicholas, it is vital to know about Nick’s personality and his closest relationships. Last year, Jim and I were invited to the opening of an art exhibition at the National Gallery in London. Tim Gardner, a young Canadian watercolourist, had spent the year there as artist in residence. A collection of thirty or so paintings, the result of studying the gallery’s permanent collection for inspiration, was on display. We entered the grand hall and were directed towards an archway leading to a smaller room where the sounds of people talking softly and glasses clinking could be heard. Groups of people parted to reveal a large painting on the wall opposite me. It was a portrait of Tim’s brother, but I did not know that then. In the style of magic realism, it was his brother’s angular face in profile. The background was a prairie landscape, empty except for earth, grass and sky. His eyes squinting into the distance, this boy seemed to be saying, “I am strong, I am a survivor. Look out there, not at me. Look where I am going, look with me.” I felt I was looking at Nicholas. I drew up to the painting — I wanted so badly to touch his cheek — this young man who seemed so proud yet so fragile and alone in that landscape. All at once, I realized that my cheeks were wet, so I gathered myself and moved to look at the next image — this one of mountains and sky.

  Recently, I came across a story that Nick had written i
n elementary school. It illuminates his resilience, determination and positive outlook that has sustained him from a very young age. The story is called “Cameron the Race Car Driver.”

  Once upon a time, there was a man named Cameron. He was a race car driver for Fisher-Price. He raced with his dad who was also a race car driver. On the weekend, he worked as a handicap bus driver. Cameron was a crazy driver, but not with the handi-bus. One race, Cameron got into a terrible accident and wrecked his car and got hurt. Cameron had to go to the hospital. Afterwards, he went back home to try and get better. He was in pain from head to his toes. He had to stay at home for nine years. After that, Cameron trained very hard to get back into shape. He wore a red t-shirt and running shoes. He wanted to be a race car driver very badly. For some reason, Cameron stopped training and decided to walk around the world. He did it six times. Now that Cameron was back from his travelling, he could be a race car driver again. But, he had to start from the beginning. He had to learn to ride a tricycle, then a bike, then he rode in a buggy, then in a tiny car. As he got better, he could drive his racing car again. His first race back was the British Grand Prix. He started at the pole position. But Cameron slipped on a banana peel at the start and spun out of control into another car. He was not hurt this time! After this race, Cameron wanted to win the next one in Argentina and he did! Cameron went on to win the driver championship for the next three years. When he retired from car racing, Cameron drove the handi-bus again. The end.

  Nowadays, Nicholas does not like to be reminded of his old school stories. He does not care for any evidence of his younger, more innocent self. And Nick will not look at photos of himself. He will become very upset and angry if someone even jokingly plays home movies, confronting him with a younger version of himself. Sure, there were times when I said, “Nicholas, adjust your expectations. Look at yourself. You have a disability.” But mostly, Jim and I have plunged headlong into adapted skiing, neighbourhood ice hockey, ball hockey with the local boys’ and girls’ club, and endless train rides during his boyhood locomotive obsession. Speed and danger were Nick’s definition of fun, so we adapted waterskiing for him by tying the windsurf board to our ski boat at the cottage. Nick would sit on a cushion between the legs of his helper and laugh hysterically when his helper shouted “Gun it!” During all of these family activities, we always expected Nicholas to cope with the same scrapes and tumbles as his sister. More than that, we used these activities to tease Nick, ensuring that his ego never inflated and that he understood his place in the world as equal, not apart. That said, Nicholas had and still has oodles of charm and he’ll use it shamelessly to get any number of treats. But no treat is so coveted that he will accept it from someone who pities or babies him.

  Halfway through grade ten and after much practice, Nick learned to say the “F” word. He splutters “Ffffffuh, Ffffuh” and he’ll pump up the volume if anyone dares kiss his cheek uninvited. The protection of his male pride is an unspoken imperative amongst our family and friends. Newcomers who break this rule are greeted with a loud “Ffffuh!”

  Nicholas believes that not acknowledging his disability means not giving in to it. He believes that if he does not gaze at his own image he will be just like any other young man — a pair of eyes looking out for speed, danger and shenanigans.

  A few years ago, Nicholas was lying on a stretcher outside the operating room at the Children’s Hospital of Eastern Ontario. As I stood by his bedside waiting for him to be called for surgery, I knew he was afraid. For a while, we watched other parents as they handed their child or baby to a kind nurse or doctor in scrubs. As each baby was whisked away over the shoulder of a surgeon, parents would stand waving and smiling until the door shut. To cheer Nick up, I began to wonder aloud which parents would cry when the O.R. doors shut. Pretty soon, we were placing bets and trying to stifle our giggles. I told the nurse who arrived for Nicholas about our game. “Oh Nick, you’re terrible!” she cried. “Yeah!” he said proudly as he glided through the doors and down the corridor, fist-punching the air.

  But keeping this pretense of bravado through wit and irony is no laughing matter. The alternative was, and is, too awful to contemplate. There have been only a few times that I have had to drop the jocular air and deal with some urgent truth. One such occasion was in 1991. Nicholas had been suffering from a vomiting bug and was hospitalized because of dehydration. An x-ray of his abdomen revealed that part of his stomach had herniated bubble-like, above the diaphragm. The doctors feared strangulation of this wayward part of his stomach and so ordered surgery. I sat on Nick’s bed and began to describe my conversation with the doctor. Nick arched backwards and began to cry out “No! No!” I ordered him to listen and when he quietened, I said softly, “They say if you don’t have this operation, you might die.” There was silence in the room. “Okay,” he said, hardly above a whisper. Then he changed the subject and began to tell me about a night nurse who sang to him in Polish.

  Sesha, the daughter of Eva Feder Kittay, is a young woman with severe and multiple disabilities. Fed up with philosophical theories of dignity and human worth that excluded her daughter, Kittay attacks the idea of setting standards for what is normal.24 She maintains that love and care are more deeply bound to dignity than the ability to think and reason, and I agree with her.

  As a mother, Kittay sees the dignity of her daughter as rooted in her own relationship of love and care, but she calls for Sesha’s dignity as a moral imperative for society as well.

  So, I have a lot in common with Eva Kittay. I have the moral capacity to care for Nicholas and, many times, that care has entailed a careful effort to present Nicholas to the world as I see him: a whole, wonderful young boy with exceptional needs. For this reason, I have overspent on the latest fashions for him, ensured that his hair was styled, his teeth perfect and his tube feeds invisible.

  At the same time, I have to see Nicholas as others see him, because if I didn’t, I would not be able to make those fine adjustments necessary to ensure his dignity remains intact. That said, there have been times when, as if seeing him through a prism, the light shifted and I suddenly looked upon him the way a stranger would. Momentarily shamed by my betrayal, I would give my boy a kiss and remove myself to reconfigure my thoughts about his normalcy. Sometimes those moments occur when I allow myself to imagine Nicholas without disability. This is a dangerous path for a mother to tread. Caring alone at home for a child who is very different from his peers, it was easy enough to see beauty, delight and pure love. But out in public, suddenly noticing the stare of a passerby and looking again at Nick, there were moments that caught me by surprise.

  In early 1996, we were living in London and I received a call from a crime writer who was married to a colleague of Jim’s. She was writing a book about a boy who had no speech, yet had witnessed a murder. For her research, she asked to meet with me and Nicholas to see how we conversed without words. I agreed immediately and a week later when she arrived, we all walked to the park, Nicholas in his lightweight pushchair. He was eight years old at the time. I told the writer about Nicholas’ many abilities and described with pride his learning successes at school. Then Nick noticed a group of his schoolmates playing soccer and began to complain about wanting to join the game. Perhaps I was running harder than usual to demonstrate how Nicholas could “score a goal,” but the wheel hit a rock in the ground, the chair tumbled sideways and I fell on top of my boy. Nick began to scream in fright, my knee was bleeding and the other boys stared momentarily, then ran off. The writer sat on the park bench quite horrified. She seemed to sense that I didn’t want help getting up, but my face was burning and I was furious that I had let Nicholas down badly. Now she would think all that talk of his intelligence, his abilities in sports appreciation and model making were all lies — just a sad mother’s pipe dreams. My knee healed, Nicholas forgot all about our tumble and I learned to be more careful and guarded in mediating our delicate relationship with strangers.<
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  Now that Nick is twenty-one and a young man, he has more responsibility for managing his own relations with the world. This he does largely by isolating himself from it. When he says that he would prefer to pass on a live concert by his favourite rock band, he might offer the excuse that he feels sick or tired. He might worry that transport to the arena will cause pain in his bad hip. Any of these excuses could be true, but it is also a fact that Nick refuses most outings these days. Recently, Nick’s carer Alvaro and his partner bought a puppy. Nicholas and Alvaro walk the dog in the park across the street. At first, Nick was amused but suspicious about strangers stopping to stroke the puppy and ask about it. “Why? Why?” Nicholas demanded to know why people were stopping to chat. I explained that it was not to express sympathy or curiosity about Nicholas — it really was about the puppy. After that, he became more enthusiastic about his outings with the dog.

  When Nicholas was a small boy, it was my job to present him to the world, and actually, it was fairly easy to convince people of his adorable qualities. Now, as an adult, he knows that negotiating a relationship with strangers is largely his own responsibility. He is fully aware that the world of adults can be harshly judgemental, and that even though his mother calls him handsome, strangers in the park might only see a disabled man in a wheelchair. Over the past few years since Nicholas has been at home and out of high school, he maintains a dignified environment in his bedroom. Occasionally, he meets someone who will be invited in for a drink and chat. With a little help from his aides, Nick is quite successful at negotiating a safe and happy social encounter. Nicholas would tell anyone that his life was full, exciting and interesting. He does not wish that his disability didn’t exist, because he doesn’t admit to a disability. For Nicholas, it’s a kind of ruse that he insists we all buy into as a matter of life and death. What is harder to deny is Nick’s world of pain.