The Four Walls of My Freedom (12 page)

The educational team of Notre Dame High School can think of no student more deserving of the Academic Perseverance Award than Nicholas Wright. Nicholas finds ways to succeed in school that fosters his education, inspires others and enriches his community. What more can we ask of a student?

Nicholas did win this award and on June 2, 2005, we all attended a formal dinner at the Ottawa Congress Centre where Nicholas was presented with a $1,000 cheque. Nicholas asked his educational assistant to deliver his acceptance speech. This is how Nick accepted his award:

I would like to thank all the members of The Spirit of the Capital Youth Awards committee for this award. This award makes me both happy and proud. I am proud of my school, my teachers and my friends for working together to help me achieve academic success at Notre Dame High School. I am proud of my family: Mom, Dad, Natalie, for their unfailing love and support. I am also proud of myself for always trying my best. I thought that I would share with you my secrets of perseverance. Talking about pain or ongoing challenge is very boring to me. I would choose having fun and learning at school over sitting home and complaining any day. I will never give up in school because, frankly, I am just too curious and excited to find out what is going to happen next in each of my classes. Some people call this approach having a positive attitude; I call it wanting to express my opinions. I have opinions in my personal life, my school, my community, and my country. And if I want people to hear my opinions, I know I have to be involved. I know how to find information about my interests, and how to use that information.
I AM NEVER BORED
!!! My advice to other students is to keep trying, even if it takes a long time to achieve academically. The world is far more interesting if you know something about it. At times we all may face some difficulties, but it is important to remember to never give up, and never give in. Thank you all, and good luck.

For good measure, Nicholas insisted on including the lyrics to the theme song of the Liverpool Football Club in place of a bio in the awards program.

You'll Never Walk Alone
When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
is a golden sky
And the sweet silver song of the lark.
Walk on, through the wind,
Walk on, through the rain,
Though your dreams be tossed and blown.
Walk on, walk on, with hope in your heart
And you'll never walk alone!
You'll never walk alone.
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For children and families, the school is the centre of belonging. Our daughter Natalie's sense of community belonging was rooted in her schools as well. Every parent will look at the range of options open to them and choose a school that best suits the character of their child, balanced with the needs and values of family. The same is true for children with disabilities, but those times that Nicholas has been in a special school — especially one far from home, were times when we all felt isolated and lonely. There were no parent volunteer nights, no Halloween parties, no garage sales to raise extra funds, no “bring your pet to school day” and certainly none of Nick's school friends dropping by to play. Our local community centre did fill the gap partially, with its family swim times and accessible playground. However, the feeling of being “normal” in your neighbourhood is often very difficult to achieve for families like mine. But Nicholas' nomination letter for a Spirit of the Capital Youth Award is a powerful testament to the belonging that Nicholas achieved for himself at his high school. And that sense of being known and loved spilled over to our whole family. Teenaged checkout clerks at the local grocery store would stop and ask if I was Nick's mum. “Nick's in my history class…tell him I said Hi!” they would cheerily say as they handed over my purchases.

Nowadays, Nicholas no longer goes to school, but he studies nevertheless. He has taken three courses over the Open University in London, an online higher learning institution in the
UK
. Most recently, he completed a course titled “Computing for Business and Pleasure.” Nicholas is learning to be a seller on eBay and now has the skills and knowledge to direct the growth of his small business. These days, Nick spends most of his time lying down in bed due to chronic pain in his back and hip. There, he is comfortable and has discovered a new belonging in the alternative reality of virtual worlds. His newest gaming device allows him to create a character who is able-bodied. Nick's caregiver takes direction on how the “virtual Nicholas” should dress, where he should go and what he should say to others in this parallel universe.

At first, Nick did not bother to put shoes on his character's feet. But after an hour of exploring the virtual city square when another female character asked him about his barefoot status, he decided to give his virtual self a pair of shoes. This is Nick's first opportunity to observe himself interacting with others. He is learning to navigate social relationships without the burden of such a visible disability skewing others' perceptions of his personhood. We have only begun to explore the possibilities of virtual worlds, but under the collective
protective
eye of Nick's carers and family, he very well may find another sort of belonging.

Yet there is no danger of Nicholas devaluing his realtime friends. For his twenty-first birthday recently, Nick organized a party consisting of a ball hockey game in a corner of Hyde Park in London near our home. Everyone had
NHL
jerseys, and all of our caregivers came to play. Nicholas tended goal and made many great saves, thanks to the width of his chair. Afterwards, it was home for pizza, beer and presents. Of course, Nicholas' caregivers are paid for working their shifts. But on that day, everyone came because they love my son. Many carers who have moved on have stayed in touch, and some have come back to visit. A few remain lifelong friends. I know that all of Nick's caregivers will say that they are paid in money, but also reap the benefits of a deep and abiding friendship with every member of my family. Now that Nicholas has survived to the ripe old age of twenty-one, we look for belonging in small spaces — Nicholas' bedroom will do fine.

Capable Me

Mothering a child with medical needs is a very public but lonely endeavour. Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighbourhood mother–toddler groups for young children with severe disabilities. Since Nicholas' birth, there have been times when I felt confident about my mothering because I was rested, healthy and enjoyed support in my nurturing role. There were other times when I felt desperately inadequate in meeting the needs of my family: my own physical and mental health failed and I became overwhelmed, exhausted and hopeless. The capabilities of mothering a special needs child, which I will argue are necessary if families like mine are to survive, are 1) the capability to be a good mother; 2) the capability to be supported in that mothering role by the state (formal support) as well as the community (informal support); and 3) the ability to have a roughly normal trajectory of caring in years, including some hope of a retirement from caring. These three capabilities I believe are matters not just of ethics, but of justice. A fair trajectory of my caring years should not include me changing Nicholas' diapers when he is thirty-five and I am seventy. A just and good society should involve a /files/21/98/60/f219860/public/private partnership to support its most vulnerable citizens. It is exactly our society's status quo of dysfunctional push-pull between public and private responsibility for people with disabilities that has painted families, especially mothers, into a bleak corner. Using Sen's Capability Approach as a basis for evaluating my own experience, it is clear that an overhaul of the current arrangements among families like mine, communities and governments is required.

To understand the current political and societal attitudes toward those with dependency needs, a little should be said about the postmodern history of how we cared for and thought about people who required the help of others to survive. The 1980s, the decade of Nicholas' birth, was a time of enormous economic growth. We all felt the rush of individualism, optimism and power. I traded my high heels for running shoes for the walk to work; I did high-impact aerobics on cement floors. We planned our days off around shopping for Art Deco antiques and gourmet cooking with friends. When Nicholas was diagnosed with cerebral palsy, we were told by the neurologist to consider placing him in residential care. “I have seen people waste their whole lives caring for a son or daughter with a severe disability at home,” the doctor said. Jim and I agreed that any notion of placing our son in care was barbaric and we never returned to that man's offices.

What we hadn't considered was that no such option for placement existed anyway. We were like newlyweds who could not conceive of the need for a prenuptial agreement. We simply could not imagine being unable to cope with or being incapable of meeting Nicholas' needs. We could not comprehend ever being unable to cope happily with any eventuality involving our son. We had love, strength and brains; of course we would prevail!

The movement for inclusion of people with disabilities really got going in the early 1990s. It was the first year of that decade when the assessing team of authorities had given us no choice but to place Nicholas in a preschool for “mentally retarded” children. It was a quiet, caring place, but after a year of being lulled into tolerating having Nicholas outside our home in the company of others, I felt it was time to return to the mainstream. I hadn't bargained for losing all his therapy services in the move. I had found a local preschool that would take him, but the other children with impairments were more able than Nicholas and required much less support. At his old “special school,” Nicholas had the services of speech, physical and occupational therapy. In the mainstream, he would receive none of those, and I would instead have to take him on separate occasions to the hospital to receive his treatments. I went from driving Nicholas to and from school once a day to school plus three trips to the hospital every week.

The need to drive Nicholas to so many weekly appointments made me question how I would meet his nursing needs as well. I knew then that the movement for inclusion shouldn't be at the expense of essential services, and I started the Ottawa Parent Preschool Advocacy Group to push for a fairer deal. This experience of trading inclusion for specialist services proved to be an omen for trends in Canada and the UK. As families like mine chose to care for their children with disabilities at home, residential facilities closed. Special schools closed as parents chose mainstream school settings. Hospitals hopped on the bandwagon by championing “family-centred care,” which anyone who has cared for a sick relative knows is a translation for “do it yourself care.” Ministries of education co-opted the rhetoric of equality to justify cutting resources for students with special needs. In the early 1990s, I fought along with others for what we believed was a re-imagined future for our children. I remember telling people that Nicholas' classmates at preschool would be his future employers. Nick's class would be part of the first generation of children to grow up with no prejudice against people with visible differences. Our idealistic enthusiasm was fierce, and we strove to reinvent a society that could accommodate our children throughout their lives. The movement for inclusion and disability rights gathered momentum as children with extraordinary needs survived and their numbers grew.

I have always advocated strongly for whatever I thought Nicholas needed at each stage of his life. But I have only recently begun to understand what this advocacy role has provided to me in return. Having a baby whom I could not feed or soothe easily made me feel sometimes like a desperate failure as a mother, but becoming an expert on therapies and political advocacy strategies helped me to experience a sense of strength and control.

Rosalyn Benjamin Darling points out in her research on parents of children with disabilities: “When parents continue to encounter needs that cannot be met by existing societal resources, they may embark on a prolonged career of seekership. The goal of seekership is
normalization
, or the establishment of a lifestyle that approximates that of families with only nondisabled children. Seekership results in advocacy and activism when certain situational contingencies or
turning points
occur.”
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Such activism Darling calls “entrepreneurship.” One has to be socialized into the role of entrepreneur, and socialized I was. The confluence of the changing role of women, opportunities for our higher education and the booming economy all provided fertile ground for the flourishing of my skills as an entrepreneurial activist. Darling continues: “For most parents, active entrepreneurship ends after they reach what they consider to be normalization,” while for some it continues to “crusadership.” These are the parents who continue to work for disabled children and adults even when the needs of their own children are met.
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Darling is right, at least as far as I am concerned, that activism offered me a sense of power, control and usefulness. Activism was and continues to be a core part of my sense of being a good mother. The opportunity to pursue entrepreneurship in the form of activism did afford me a sense of normalization and provided me with a sense of being a good mother to my son. It still does.

Fostering a sense of community for parents of children with disabilities was possible before technology made that job easier. Thirty years ago, the Easter Seals Society of Ontario built programs of support that were rooted in the wisdom of generations of mothers. A specially trained nurse would befriend a new mother of a child with disabilities and in the course of regular home visits, offer all sorts of practical advice and assistance. Mothers and some fathers were invited to join the Parent Delegate program, offering space for activism and information-sharing. Sadly, both of these programs have been cut and Easter Seals now concentrates on funding special equipment and summer camp experiences. But the opportunity to access disability-related professional support at home, together with the chance to befriend other adults who shared our parenting experience, was a powerful combination of support in the just cause of helping me to be a good mother. Mumsnet and other social networking sites are all right, but nothing can replace face-to-face contact with those who share a very unordinary kind of parenting experience.