I was 12 years old when Jessica was born and like most children born in the pre-inclusion era I had no knowledge of Down’s Syndrome: disability had never entered my bubble. Upon entering the delivery room I sensed something was wrong. I could see tears in my dad’s eyes and when I looked at Jessica the first thing I noticed was that her eyes were different. On my first day back at school after Jessica’s birth I hid in the school library trying to understand what my little sister was going to be like, but the dated books with tales of ‘mongols’ and short life-spans did nothing to allay my fears. Two further events occurred that day that forever shaped my attitude towards my beautiful new sister. Having noticed I was upset, my form tutor called me aside and, after hearing my news, asked; “Are you more upset for yourself or your sister?” This may seem a rather harsh comment to make to a 12 year-old but it made me stop and think. It’s a question I have asked myself many times since, particularly on those days when I would anxiously drop a very happy Jessica at the gate of her mainstream school at a time when inclusion was a new and not always welcome concept. Later that afternoon, my friend, Maria, sat next to me in maths class and hesitantly began to talk about her little sister who had Down’s Syndrome. Then came the wonderfully comforting realisation that I was not alone.
|Jessica with her sisters and nephews|
From the moment she was born, Jessica was a tough little fighter. She spent the first three years of her life in and out of hospital and many times we were not sure she would make it. Worries about spots and first boyfriends seemed trivial as I would rush to the hospital every day after school, scared that my sister had suffered another setback. While I believe siblings of children with disabilities often grow up much quicker than their peers, many will develop an enormous sense of compassion that has the potential to become a force for change. My sister and the positive attitude of my parents taught me patience, compassion, and instilled in me a need to fight injustice in whatever form it may take.
As a teenager I began doing voluntary work with local disability projects but the idea that I could do so much more to champion the rights of people with disabilities had not occurred to me. Then I began working on projects with children in developing countries and witnessed firsthand the lack of support available for the most vulnerable members of society. I resolved to do everything I could to redress the inequalities that were often never questioned by wider society. I was lucky enough to work with an inspiring group of parents and professionals to set up an inclusive children’s centre in London. After 4 years there I moved to Burkina Faso to work with disabled people’s organisations where I was exposed to some of the most uplifting and inspiring yet heartbreaking and frustrating experiences of disability I have ever encountered. Over the years I have met many beautiful and inspiring children - Anita who was homeless on the streets of Quito and branded ‘loco’ by local adults and children alike; Chantel whose mother refused to send her to school because she made more money begging on the bustling roads of Ouagadougou in her wheelchair; Claire who, unable to move, was left with a bowl of water and a dog for company under the blazing sun whilst her 76 year-old grandmother tried to earn a living in the fields to feed her; and Wenlami who was found disfigured and abandoned at the door of an orphanage. These stories and many others stay with me and fuel my passion to contribute to a more loving and equal society that embraces difference.
While in Burkina I met Yacinthe who spent the first 3 years of his life lying on the floor of an orphanage following the death of his mother and a bout of meningitis. After many visits and cuddles I fell in love with the little boy who would stare up at me with big eyes questioning what I was going to do next. To fast forward the beginning of another very long story I am now mummy to Yacinthe and his little brother Elijah and Jessica is a proud and loving aunty – just as long as they don’t touch her computer games or mess with her hair!