Nancy Maguire was one of the speakers at the WOW party. She agreed to share her journey here with us.
I was born in London in 1986 and have a condition called osteogenesis imperfecta, commonly known as brittle bones. Many children with brittle bones grow up protected â overprotected, some might say â from any possibility of hurting themselves. My parents wanted me to be safe, but they also wanted me to have the opportunity to play, make friends and lead as normal a childhood as possible.
In the 1980s, inclusive education was still a fairly new concept. Like most parents of a disabled child, mine were advised to send me to a special school. My mother is a teacher, and after visiting the recommended school she was convinced that it would provide a substandard education. My parents have always used my older sister Katy, who did not have a disability, to gauge what is acceptable for me: If they thought something wasnât good enough for Katy, then it wasnât good enough for me.
I was the first child with a disability to attend my primary school, and in many ways I felt like a guinea pig for inclusion. For example, despite having a positive attitude towards including me in all aspects of school life, my teachers lacked experience in how to adapt physical education so that I could get involved in a meaningful way.
Like most childhoods, mine wasnât always easy. I spent a lot of time in hospital, and even within an âinclusiveâ mainstream education system, there were times when I was excluded. For example, I wasnât allowed to go to my nursery Christmas party because the teachers were worried I would break a bone.
Also, at high school they had a separate table in the canteen for children with disabilities and the teachers could not understand why I refused to sit at it. Despite setbacks and obstacles, however, I managed to flourish both educationally and socially.
I was always encouraged to try new things. My extracurricular activities included swimming, ballet, wheelchair tennis, drama and singing. In many of these, I was also the only child with a disability. Interestingly, I often found these groups more inclusive than school in terms of how much I could participate and contribute. I felt wanted and people found creative ways for me to get involved. Nonetheless, there were many things I found difficult to do because of my limited mobility. I would sometimes feel upset because I couldnât do things as well as the other children, and as I grew older and more self-conscious, I became reluctant to put myself in situations where my difficulties were on show.
In my teenage years a lot of my friends went through phases of being a âgothâ or a ârude girlâ, which involved dressing or behaving in ways designed to attract attention. Whilst they were doing everything they could to stand out and be different, I was desperate to be ânormalâ and fit in. Growing up with a disability, I received a lot of attention. People in the street would often stare at me, make comments and ask my parents, âWhatâs wrong with her?â I had days when I was able to brush it off, but no amount of resilience or family support can stop that from affecting you.
I developed extremely low self- esteem and poor body image, made worse because I was significantly overweight. I found exercise difficult, and like many girls my age, I ate to comfort myself. I had also internalized the medical terminology that was used to describe me â in particular the word âdeformedâ (I had a curvature of the spine, since corrected). When I was 14, I developed an eating disorder, partly because I wanted to lose weight â but also because my weight felt like one aspect of my physical appearance that I could actually control.
Although I had incredibly supportive family and friends, being disabled were never something I viewed as a positive thing. I thought I had to overcome it, like adversity. I became obsessed with being as âundisabledâ as possible, and I was convinced that if I could walk, my life would be a lot better. Ironically, although I no longer use a wheelchair, in many ways I feel more aware of my disability than ever. People still make comments about me because I have small stature, and make assumptions about my life and ability; I always have to prove myself, particularly in the workplace. Though I am not defined by my disability, it has been pivotal in shaping who I am and what I have achieved. Having a disability is now something I embrace: I no longer see it as a negative thing or something I should be embarrassed about. In many ways being disabled has worked to my advantage and created opportunities that might never have been available to me â like writing this article.
Every childâs experience is different. I come from a lower- middle-class family in the United Kingdom, where I had access to free health care and a good education. But I strongly believe that the issues of belonging, self-esteem and aspiration transcend such distinctions as gender, class and nationality. To develop a greater sense of self-worth, children with disabilities need the opportunity to participate and contribute in all aspects of their lives.
People with disabilities are becoming more visible in many walks of life â in politics and the media, for example. This is instrumental in improving childrenâs perceptions of what they can achieve. When I was growing up, the only role model I had was Stevie Wonder. I admired him because he was a successful and respected musician despite being blind. However, it would have helped me to see people with disabilities doing everyday jobs â as teachers, doctors or shopkeepers. I think that would also have helped my parents. My mum said that when I was a child, she tried not to think about my future because it made her scared. She knew that I was capable but feared that my options would be limited.
As it turns out, my disability has not prevented me from achieving any of the important things. I am a qualified social worker, passed my driving test when I was 16, left home when I was 19 and have lived and worked in Asia and Africa. In the future I hope to be an advocate for children with disabilities on an international level, as I passionately believe in the inalienable human rights and untapped potential of these children.
First published at UNICEF