'You have to see it to believe it', Shantha Rau Barriga, Director of Disability Rights for Human Rights Watch told me, when we met for a coffee on London's Southbank in early November last year. The question I had put to her was, where in the world the organization would say was the worst place to be disabled.
She looked at me sternly, 'Ghana' she said. 'I could tell you, but you wouldn't believe me, you have to go there. You have to see it to believe it'.
Of course this conversation was somewhat contrived, we weren't just two women with a passion for advocating the rights of disabled people, chatting over cappuccinos. We were recording an interview for a BBC documentary and both of us knew what the other was going to say. But months and months of research had been undertaken before this conclusion had been reached. Not only by Human Rights Watch themselves, but also by the production companies responsible for the content of the program.
The researchers and fixers on the ground in Ghana had been mentally preparing me in the weeks that preceded our trip, but as much as I felt I knew about what we were going to uncover in western Africa, Shantha's words hung in my mind as we touched down in Accra and filming commenced.
Since the car crash which left me paralysed aged 18, I have travelled extensively and felt I knew what I would encounter whilst filming the program. For example, it is widely acknowledged that disabled people around the world, especially women, are ostracized, hidden, confined or abandoned. Further more, common sense would dictate that access to equipment, education and healthcare would be difficult, if not impossible, in developing countries and of course, the definition and cultural context in which disability is understood, is often shaped by traditional beliefs and religion, so there would inevitably be what I consider ignorant or uneducated perceptions of what causes disability.
But what I experienced was worse than I could have imagined, and Shanatha was of course right, I did have to see it to believe it.
"Prayer Camps' line the roads that head north from the capital of Ghana. These camps demand high prices for the healing of the 'spiritually sick' and practices often include chaining, starving and torture of adults and children with physical and psychosocial disabilities.
We visited several of these camps, one of which, Edumfa, chains disabled children but we were unable to gain access with our cameras as the Pastor of the camp is highly suspicious of foreigners, following a report done by the U.N Special Rapporteur on Torture, Juan Mendez, who reported that Ghana's treatment of persons with psychosocial disabilities, in particular the practices of shackling the mentally ill to trees, depriving them of food or using electroshock therapy without anesthesia, may constitute torture. This report was given to The U.N Human Rights Council in Geneva last year, but my journey there revealed very little had been done to address the plight of the shackled disabled in Ghana.
The saddest encounter I had however, was with a man who had a condition that appeared very similar to mine. Because of this I empathised deeply with his situation and was heartbroken and shocked at the state in which we found him. He was withered and frail, and despite being the same age as me, at thirty years old he looked like a child, terrified and confused, confined to his room for fifteen years due to the stigma that his disability carried.
Francis died nine months later. But the real tragedy lies in the fact that he is not alone, there are hundreds of thousands of others like him. Not just in Ghana, but worldwide. Confined and hidden, living with the curse of disability.
When I returned to the UK I found myself in a conflicted state. Much of my work efforts focus on campaigning for the rights of disabled people, and I am well aware of the fact that life in the UK is far from perfect. The recent cuts, especially of the Independent Living Fund, are just one example of the type of discrimination that disabled people still face on a day to day basis.
The UK is by no means the best place in the world to be disabled. But given that as a disabled person I am able to access the basic care, equipment, education, employment I need to live, I feel very privileged in comparison to the estimated one billion disabled people worldwide, of which 80% are found in developing countries.
But I believe that this paradigm shift comes with a responsibility, to continue to campaign for a better future for disabled people all over the world. Ahead of the UN Summit to adopt the post-2015 development agenda in New York in September, disability campaigners around the world are calling for decision makes to take into consideration the one billion disabled in their new Sustainable Development Goals.
So that we can collectively work towards a world in which disabled people aren't killed, hidden, abandoned, chained or forgotten but instead receive the equipment and access to education they deserve to be enabled to contribute to their society and be considered valuable, in every sense of the word.
Becoming disabled did not end my life, it started it, and I want the life lessons I have learnt as a result to be ones that in turn positively affect the lives of other people with disabilities and I dedicate this to Francis. We can not leave any one else behind.
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