One of the best things about being a disability activist is meeting remarkable people along the way. I must admit that before I became an activist I didn’t really have anyone in my life who was ‘like me’. I have Osteogenesis Imperfecta (or Brittle Bones Condition) and I’d never met anyone with this same condition, or even anyone who used a wheelchair like me. I went to a mainstream school and I was ‘the only disabled in the village’, so to speak. None of my family had a disability and certainly in my early years I didn’t associate with the word disability, I was just Samantha!
The only contact I had with anyone disabled was at my annual orthopaedic appointments where I’d be in a waiting room full of people who used wheelchairs or had a plaster cast on their arms and legs - something I was all too familiar with. I also remember seeing documentaries growing up showing how disabled people lived in developing countries. I remember being shocked by some of the things being shown: because of a lack of understanding around disability, disabled people were often institutionalised, mistreated and lived in poverty, without the support of their communities or access to basic health services. This had a lasting effect on me and I vividly remember thinking how grateful I felt to have been born in a country which could support my needs and where I didn’t face the same level of stigma.
Fast forward many years and I found myself face to face with the people from those documentaries I’d watched as a child. I’m the new ambassador of ADD International, which supports disability activists in Asia and Africa to claim their rights. ADD had invited me to a dinner to meet five of these activists, who were in London to participate in the Commonwealth Heads of Government meeting (CHOGM), where promoting inclusion, including of disabled people, was a key topic of discussion. With an estimated one in six of the world’s population living with some form of disability*, it is vital that disabled voices are heard at these global summits, so there was certainly cause for celebration.
During the dinner, I sat and I listened to the activists’ stories, and they shook me to my core: stories of discrimination, prejudice, people fearing for their lives all because they were born with a disability. I heard stories of families being accused of witchcraft because their child had been born with albinism. I felt in complete awe hearing how these disability activists were leading movements for change in their countries. What struck me most was how much we shared in common: we all strive for independence, we want love, friendship and respect. Although thousands of miles apart, our disabilities bring us closer together than anyone can imagine.
These young activists just want to live life to the full and deserve to be treated as equal and integral members of society. They are doing an amazing job campaigning for this in incredibly difficult circumstances. I couldn’t help but feel daunted by the scale of the work that still needs to be done…clearly attitudes need to change on a monumental scale.
By the end of the dinner I was feeling uplifted and it was hard not to, the strength and spirit of the activists I’d met was infectious. The Commonwealth uses the word ‘Common’ meaning shared norms, values, beliefs, however there is still so much inequality in how disabled people are treated. I came away pondering all that the Commonwealth still needs to do, both here in the UK and in developing countries, in order to become truly inclusive and ‘leave no one behind’.
*according to 2011 World Health Organisation and World Bank report