We have neglected leprosy, but people affected must speak out, says Javed Abidi.
As the only global cross-disability, disabled people's organization (DPO), DPI is unique. All other global disability organizations are single-disability organizations. DPI also has an unparalleled grassroots reach, especially in countries of the Global South. It has members in 130 nations in five regions across the world. It was the first successful cross-disability endeavor to translate talk about full and equal participation for people with disabilities into action.
DPI was set up in 1981, the International Year of Disabled Persons. It was the culmination of efforts by people with disabilities to take control of their own destinies. Leaders from that era said, 'We are tired of our lives being controlled by parents and professionals. While we respect and value them, we should be in charge of our own lives and be able to take our own decisions.' That's when the world-famous slogan "Nothing about us without us" was born. The idea was so powerful that in a very short space of time it had spread across the globe.
To advocate for the rights of persons with disabilities - for all rights of all people with disabilities.
There are said to be more than 1 billion disabled people on Earth. Eighty percent are in what is called the Global South, the poor countries of Africa, Asia, and Latin America. Yet the management of disability is in the hands of the people in the Global North. That's something that has begun bothering people in the South. They feel that others are speaking for them and presuming what they feel or want or need. I want to give a voice to the Global South and ensure that their voices are heard.
I firmly believe that people affected by leprosy are part of the disability community. In my eyes, there is no difference between a blind person, a deaf person, a wheelchair user, and a person affected by leprosy, Down's syndrome, autism or any other disability. But I find that the disability movement at large has neglected the cause of people affected by leprosy. Their concerns don't feature much in the mainstream disability-rights discourse. But having said that, why hasn't the leprosy community come knocking on the door, as have people with psychosocial or intellectual disabilities or autism? You have to be vocal; you have to fight for your own rights.
One thing I have promised to do is to survey our Member National Assemblies and see whether people affected by leprosy are part of the movement and whether our members are aware of the issues. From the leprosy side, I will solicit a list of all leprosy organizations in each country and forward it to our members. Somebody will be made aware, somebody will be embarrassed, somebody will make a phone call, and some kind of discourse will start.
I have not heard much mention of the Convention on the Rights of Persons with Disabilities in our discussions. If you look at the Convention carefully, it contains everything that the Principles and Guidelines do; it's just that the Principles and Guidelines are focused specifically on leprosy. The Committee on the Rights of Persons with Disabilities (CRPD)* needs to be sensitized about leprosy. The nations that go before it need to be questioned on issues relating to people affected by leprosy. At last year's Conference of States Parties there were side events on different disabilities. There was not a single person speaking for leprosy there. Where are the people who will go and talk with members of the CRPD? There should also be a strategy to ensure that a person with leprosy makes it to the CRPD. What a great day that would be!
* The body of independent experts that monitors the implementation of the Convention on the Rights of Persons with Disabilities by the States Parties. All States Parties are obliged to submit regular reports to the Committee on how the rights are being implemented.
Javed Abidi is Chairperson of Disabled People's International (DPI) and a member of the International Working Group (IWG) to monitor the implementation of Principles and Guidelines to end discrimination against people affected by leprosy and their families.