Nancy Maguire is a disability activist from the United Kingdom. She is a qualified social worker but, after travelling abroad, decided to campaign for the rights of people with disabilities, especially young women. She has worked with disabled people’s organizations in Asia and Southern Africa, and hopes to obtain a Master’s degree in policy and development.
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.