I am at the United Nations disability rights convention conference in New York to engage in discussion and work with others to search for solutions to end the denial of disabled people’s rights.
A major session at this meeting of the parties to the Disability Convention is about the drive to end the institutionalisation of children. The Lumos charity estimates that around eight million children are living in institutes and about as many as a quarter of these children are disabled. The damage caused in these institutes actually means many more children leave (if they do) damaged in some way.
Lumos was founded and funded by J.K. Rowling, author of the Harry Potter series.
In 2004, after seeing an article in the Sunday Times about children being kept in caged beds in institutions, J.K. Rowling felt compelled to address this terrible problem. As a result she founded the charity that became Lumos.
She said, "I looked at that photograph of the boy in his cage bed and felt he has absolutely no voice. This touched me as nothing else has because I can think of nobody more powerless than a child, perhaps with a mental or a physical disability, locked away from their family. It was a very shocking realisation to me and that's where the whole thing started.”
My daughters tell me the word “Lumos” is wizard Harry’s spell that shines a light from his wand into the darkness. Lumos has succeeded in getting many thousands of children out of institutions in Eastern Europe. Some of these children will be telling their stories at the conference via video.
J K Rowling’s character Harry Potter is very different from the muggles (humans with no magic) he lives with, he is an orphan and he is most certainly not wanted by the muggle family, he has a special mark and has special abilities. The foster family are scared of him, he is bullied by their own child and is in fact locked under the stairs. Harry though of course has special talents and in the right environment of Hogwarts goes off to do luminous magic.
I wish Harry could cast a magic spell so that disabled children around the world who linger in institutions could be released, grow up in a home with loving people, to belong in a community, and to learn alongside neighbourhood friends at school. These are rights enshrined in the disability convention.
At this conference session my fellow traveller to New York, Robert Martin will tell of his life growing up in New Zealand’s institutions. He confirms these are places where the abuse of being coerced away from and deprived of the love of your family starts to destroy you; where no one comforts a small child who cries for their sister; where loneliness is dark, desperate and doesn’t abate. Robert experienced physical abuse and had his childhood innocence shattered.
Robert is a New Zealander with a learning disability (we used to call that an intellectual disability). By telling his story to the UN 10 years ago during the development of the disability rights convention he shone a light on the need to hear the voices and opinions of people whose rights have been trodden on.
After Robert’s appearances at the conference all those years ago some conference attendees observed a change in the bureaucratic UN environment. Diplomats representing the assembled governments from around the world recognised in their hearts and minds the important voices in developing this covenant of international law are the voices of disabled people. The diplomats then allowed these voices to lead the convention development, and the disability convention was agreed in faster time, and signed by more nations more quickly, than any other convention. UN human rights conventions are covenants, the deepest of international legal commitments.
Harry Potter used his magic powers and powerful friends to enter into the world of wizards and escape his oppressive home. Robert Martin projects this same resilience and story of survival that inspires us all with hope. He inspires me as a fellow disabled person that we can shine our lights and share our magic in muggle dominated communities.
Time and technology permitting, I’ll regularly blog over the course of the convention conference with updates.
Paul Gibson is Disability Rights Commissioner at the Human Rights Commssion. He is sight-impaired.