In 2010 my colleague Eyong went to Kenya to find out what the top issues for people with disabilities were. There, he met with lots of great NGOs like Users and Survivors of Psychiatry Kenya, and the Kenyan Association of People with Intellectual Handicap. They told him about how people with disabilities were constricted in their lives because their relatives and their community treated them as children, taking decisions for them, in their purported best interests.
The right to make decisions is a subject which MDAC has been working on since we were established in 2002. We published a series of reports in 2006-8 looking at guardianship and human rights in various European countries, and we had litigated many cases. Always up for a challenge, we agreed to help Kenyan NGOs.
What we found was that rather than the law being used to strip people of their rights (like the case of Stanev v. Bulgaria, for example), in Kenya the law is largely absent. A woman with intellectual disabilities called Atieno told us how she was brought up in a goat pen. As an adult, she was raped and the police didn’t bother doing anything about it. She was sterilised without her consent. No law deprived her of anything. The reverse was true: no law protected her or enabled her to seek justice.
Our researchers spoke to many people with disabilities, their families and others including judges and NGO experts. We analysed the law and policy through the lens of international law which is binding on Kenya. We were finally able to launch our report “Legal Capacity in Kenya” a month ago today in Nairobi.
Nice to meet you
We organised a roundtable at the Intercontinental Hotel. The president of South Sudan happened to be staying there too, so the red carpet was rolled out, and the hotel was teeming with scary-looking security guards failing to look incognito. We had arranged a roundtable discussion with our NGO partners, where we also invited people with disabilities to speak themselves. We also invited policy-makers, largely to listen and respond.
I’d had an early breakfast and was helping Eyong usher people into the room. I was faffing around trying to stick the projector into Eyong’s computer (probably getting in the way more than helping, as per usual), so sat down quite late, after I had parked my own laptop near the front. I hadn’t met the person sat next to me. “Hello, I’m Oliver from MDAC”, I said. “Nice to meet you. I’m Andrew,” said the person next to me. “What brings you to this event?” I asked, not knowing which organisation or government department Andrew worked in.
“Well, you see,” said Andrew, flicking to page 94 of our report, “I recognise my story. This is my story – I’m Yusuf!”
I asked Andrew whether he liked the name Yusuf and luckily he did. Phew! I noted that not only is he in the report, but his quotation is on the front cover.
Andrew/Yusuf was one of the stars of the roundtable event. He gave a presentation, and told the assembled policy-makers how it feels when the decisions were taken away from him:
I think if you have people who care for you and people who love you, people who will tell you ‘Look here, you are sick and we are taking you to the hospital’ and also give you a chance to express yourself in terms of what you want, then you will cooperate. But if you are forced, that is the time things get worse […] You feel traumatised, you feel the decision made was not in the right direction […] I think the family should be aware that when they have a sick person they have a duty to ensure that he is respected as a human being. They should also help the person to make the right decision, rather than seeing the person as a bother to them. (page 97 of our report)
Andrew was one of the speakers at the press conference, at which 30 journalists attended:
At international organisations like MDAC, our daily work can often feel far removed from real people. It’s always exciting to meet people whose rights we are working for – it keeps us grounded in the reality of their lives, and we take great pride is raising their voices as high as possible. For us, one of the most important achievements with our work in Kenya is that Andrew’s story, and those of many more, is carefully documented in our report. If you haven’t done so already, you can – and should! – read them here.