It wasn’t hard to understand why they might feel that way when I saw a five-year old girl in Ghana dressed in rags, with a heavy chain secured to a nearby tree clamped around her legs. This was her fate because her family believed that she was possessed by evil spirits, which is commonly associated with having a disability in many communities.
Or when I met Agus, a young man with a psychosocial disability (mental health condition) in Central Java, Indonesia. He spent four years locked in a sheep shed, barely able to stand or move, surrounded by the stench of human and animal waste.
I have just returned from Serbia where we documented that children with disabilities are often confined in institutions, sometimes taken there directly from the maternity ward on the advice of medical staff. Many of the children do not attend school or play with toys or other children. They just lie in bed all day without any stimulation or interaction. Instead of echoing with laughter and running, the halls of these “homes” for children are quiet, chilling. And many of the children there will never leave.
I was fortunate to be among the many advocates who participated in the negotiations on the international disability rights treaty at the UN in New York. During that process, there was a sea change in the way people viewed, respected and engaged with people with disabilities. People with disabilities had a voice, and they were heard.
Ten years since its adoption, much progress has been made in so many aspects of the law and life, and people with disabilities in many countries are leading the fight for their rights.
At the same time, in many countries – both developing and supposedly developed – people with disabilities continue to be locked up in institutions, hidden out of sight or treated like animals. And stigma and discrimination play a central role.
Chances are you know someone with a disability. According to the World Health Organisation, 1 billion people – one in seven – have some form of disability. They are our classmates, relatives and friends, and they have the right to be treated the same as everyone else.
Yet, laws in dozens of countries prevent people with disabilities from deciding whom to marry, where to own a home, or what medical treatment they prefer. These are decisions that are often taken for granted by us, but in some places people with disabilities have this right handed over to a guardian, who makes all their decisions without consulting them.
Last week, people with disabilities and other advocates, diplomats, and friends of the disability community gathered again at UN headquarters in New York to exchange views on how the Convention on the Rights of Persons with Disabilities(CRPD) can be implemented and monitored. When it came into force 10 years ago, it was the first major human rights treaty of the 21st century – a watershed moment. The CRPD has now been ratified by 164 countries.
To me, the treaty is far more than a legal framework. Yes, it sets out the right to equal access to education, freedom from torture, and the right to live with peers in the community. But even more critical is the convention’s potential to shift the way we think about disability.
It conveys that people with disabilities are not objects of charity, but have the same rights and dignities we all do.
The challenge of changing the mindset of millions around the world remains. To start, we need to see more people with disabilities in leadership and decision-making roles – in governments, companies and the entertainment sector.
In addition to amending discriminatory laws, governments need to make sure that disability rights are enforced through better monitoring and resources invested in rights-respecting alternatives to institutions and isolation cells. And people with disabilities themselves and their representative organisations should be involved every step of the way.
We need to keep in mind that disability does not discriminate – any one of us can join the disability community at any point in our lives. It’s not about them, it’s about us.