Perspective: From pioneer to advocate for inclusion

by Nancy Maguire

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 – overprotected, some might say – 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 wasn’t good enough for Katy, then it wasn’t 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 wasn’t always easy. I spent a lot of time in hospital, and even within an ‘inclusive’ mainstream education system, there were times when I was excluded. For example, I wasn’t 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 couldn’t 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 ‘goth’ or a ‘rude girl’, 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 ‘normal’ 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, “What’s wrong with her?” 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 – in particular the word ‘deformed’ (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  – 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 ‘undisabled’ 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 – like writing this article.

Every child’s 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 – in politics and the media, for example. This is instrumental in improving children’s 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 – 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.

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