A Champion for Disabilities in the Global South
This story is dedicated to the memory of Javed Abidi (1965 - 2018), global disability rights advocate.
If you sit down with Dorodi Sharma (’15, Public Policy) you are going to get an education. She will tell you about the disabilities movement, and its fundamental role in our collective human experience. As the Disability Rights Specialist for the United Nations in India, and as someone who has seen the ups and downs of this work for 9 years, Sharma will tell you, that what you are about to hear is her ‘teachable moment.’
The most recent report of the World Health Organization on Disability (2011) estimates that 15% or 1 billion people in the world experience some type of disability, 80% of which live in the Global South. As the largest minority in the world, people with disabilities experience barriers in education, employment, health conditions and care, social development, gender and race equity, and so on. And more to the point, the global discourse on this issue is predominantly lead by people who either do not live with a disability nor reside in the Global South.
Sharma joined this conversation in 2009. Three years prior, the United Nation adopted the Convention on the Rights of Persons with Disabilities (CRPD). This was a huge paradigm shift. According to U.N. documents, it was the first comprehensive human rights treaty of the 21st century, with the largest number of signatories to date on a convention’s opening day. This global agreement became a new tool for advocacy and empowered groups like Disabled Peoples’ International (DPI) to advance the disabilities movement since the early call of ‘Nothing About Us Without Us’ in 1981. Since entering into force in 2008, 176 countries, including Sharma’s home country of India, have ratified the convention, and worked to harmonize national laws with the CRPD.
In 2011, India’s Javed Abidi became DPI’s first Global South chair. “I came out of nowhere, from the Third World, from India. There were murmurs. The status quo was being disturbed because until then, all of the leaders were from Europe or North America and they had set the agenda,” recalls Abidi. This was followed by a complete changing of the guard in DPI leadership, tipping in favor of the Global South. “The impact was felt from Geneva to Vienna to Brussels, right up to New York – these, the so-called disability capitals of the world. That’s where policy, and decision makers are, and we the poor, disabled people - a huge, vast majority - are miles away in India, Africa or other places,” he adds.
As these changes were occurring, Sharma was Abidi’s close colleague. They had been working together at the National Centre for Promotion of Employment for Disabled People (NCPEDP) for two years when he became DPI’s leader. As India’s leading cross-disability advocacy organization with Abidi at its helm, NCPEDP had been intimately involved in the disabilities movement since 1996 - trying to dispel the traditional charity, and welfare view of disabilities in favor of empowerment, and productivity.
“When I applied for the positon at NCPEDP, I admit, it wasn’t a conscious decision. I kind of stumbled upon it. I had no clue about disabilities, I had no clue about the language or the concepts involved,” says Sharma. “The first few weeks I made several mistakes. For example, I was writing a story about a young man who was a wheelchair user. In my draft I wrote ‘confined to a wheelchair suffering from something.’ My boss [Javed Abidi] who himself was a wheel chair user, read it and sent me a nice note with a smiley face, saying ‘I’ve been a wheelchair user since I was 15, and trust me, I am neither confined nor suffering.’ He and other amazing people held my hand, shared their disability stories, and helped me understand this work better. I also read a great deal, and over time, I changed,” she adds.
But did she really? As someone who grew in a time of political turmoil, activism was (and is) in her DNA. Originally from the remote northeastern State of Assam, Sharma grew up in Jorhat, a town near the Brahmaputra River. She was the second of four children in a family where civic discourse was a way of life. During her primary school years, insurgency, ethnic unrest, and martial law was a regular occurrence in the region. With a unique history, the seven states of the northeast were generally poor and lacking in infrastructure, and as one local newspaper headline put it ‘On the map, off the mind.’ So, it was not uncommon that the Sharma children listened to adult conversation about governance over chai in the living room. Sharma herself credits this early environment for planting the seeds of activism in her even though it took a little time to find her way.
To follow her older sister, Sharma at first hoped to study medicine at university. “Unfortunately for my parents, but fortunately for me, I wasn’t able to crack the examination to enter med school. I never even considered going for the engineering exam. So, my only other option was to study agriculture,” she recalls. But despite a successful course of study, Sharma realized full-time research wasn’t for her. In her third year, a light bulb went off when she took a mass communication course as part of her program. “The idea was to make our research accessible to farmers through demonstrations and training. We had a chance to go out in the field and this excited me,” she says.
From here, Sharma went on to a master’s in journalism. She then landed a position at Press Trust of India in Delhi, followed by an assistant producer role at NDTV. In her work, she covered a lot of human interest stories, and enjoyed connecting with people through her craft. But she realized was still missing something. “I wanted to do work that ticked off all of the boxes in my head when it came to a career, including a sense of purpose” says Sharma. And this brings us back to her affiliation with NCPEDP. The work there married her background in mass communication with her interest in affecting change.
Aside from the aforementioned bumps in the road, she experienced another baptism by fire. In her second month at the NCPEDP, she was asked to participate in an intense last-minute campaign to include disabilities in a new law on education rights that was being passed in India at the time. “I was just starting my involvement in the disabilities movement at the time, and being allowed into this process was extremely humbling and meaningful,” recalls Sharma.
But let’s back up a minute. According to India’s last census (2011), 2.26% of a population of 1.2 billion live with a disability. This translates to 26.8 million people, of which 73.8% between the ages of 15-59 are unemployed and 45.5% are illiterate. This was the first census in which disability was included in the planning process, and Sharma had a role to play in this effort, but we will get to that in a minute.
“India has traditionally had huge challenges in terms of disabilities. As a country we have not understood prevalence of disabilities, and that people with disabilities are people first. That they should have access to opportunities as everyone else. People with disabilities can be contributing members of society and can actively participate in nation building, just like anyone else,” remarks Sharma.
Until 1995, there was no law protecting people with disabilities in India. The law, which did not include the State of Jammu and Kashmir, took a medical approach to disabilities. It covered seven conditions: blindness, low vision, leprosy-cured, hearing impairment, loco motor disability, mental retardation, and mental illness. Within the confines of available municipal resources, regions and localities were encouraged to undertake research, early prevention and intervention among children, and conduct early awareness/education campaigns. The law recognized the right of disabled children to have access to education and for people with loco motor, hearing or visual impairment to have employment in the governmental sector.
“This law was a start to the discourse that people with disabilities exist, and that they need to be able to come out and be a part of mainstream society in fundamental ways. Unfortunately, when it came time for implementation, it really wasn’t there,” says Sharma. “And even today, public spaces and schools are not accessible; families hide the fact that they have a disabled person in their family, where the mother is always the primary caregiver. People with disabilities live in the house like a non-contributing member; their wishes are not listened to, and they are considered a burden. And when it comes to people with mental health issues it is even worse. In India, the constitution uses the concept of ‘unsoundness of mind’ so if you are certified to be of an unsound mind, you basically become a nonperson. You do not have any rights whatsoever - you cannot have a job, bank account, sign contracts, or own property. You cannot have a passport, your life, and decision making ability is taken away from you,” adds Sharma.
In 2007, India ratified the 2006 U.N. Convention, and this brings us back to Sharma’s first baptism by fire. In 2009, Sharma is participating in a large meeting of disability leaders, as part of the Abidi-created National Disability Network. A source reports that the government intends to amend the 1995 disabilities act to reconcile legislation with the convention. The activists were able to find an unpublished copy of the amendment, and when they looked at the document learned that the government was proposing over 100 amendments to the existing law. “We realized that even with that many amendments the 1995 legislation would never be able to comply with the [U.N.] convention because the basic premise of the 1995 law was charity, not rights. So no matter how many amendments would be made to the law the fundamental structure would not change. And then someone from the crowd suggested we create a new law, rather than force the old one to be something it is not,” recalls Sharma.
The movement led by Abidi swung into action. They sought a meeting with the minister in charge of the disability portfolio, with a well-drafted new policy document in hand. “The minister gave us a patient hearing but even then it took us 10 months of persistent advocacy to convince the government to draft a new law,” says Sharma.
In April 2010, the Indian government created a committee to draft new legislation based on the spirit of the U.N. convention. “This was a huge victory for us and it was a campaign I was closely associated with; but even after the formation of a committee it wasn’t until December 2016 that the Parliament finally passed the new law through the efforts of civil society, and our advocacy. I am not exaggerating when I say I had tears of joy when the law passed because it was one of the first campaigns we worked on early in my role in the disabilities movement. It took so long for the campaign to reach a conclusion, and it was actually only a first step. And now, we have to implement the law. But it was a defining moment for us. The campaign had a lot of ups and downs, over almost 6 years. It taught me patience, which battles to choose, and to never give up. All of the credit goes to Javed Abidi, the director of our organization, from whom I learned that the true test of advocacy is how patient and persistent you are. When everyone else had given up he was still continuing to work on the issue,” says Sharma. The new law was called The Rights of Persons with Disabilities Act 2016.
Concurrent to the start of this campaign, in 2009 the Indian government was also readying itself for the 2011 census. This involved working through the questionnaire itself, and training the vast number of governmental agents to carry out the census. Because of India’s size, local teachers are tasked with going door to door with the questionnaire. “They have to be trained and sensitized to ask the right questions in the way they are supposed to be. So, unless they are educated to ask about disabilities they may not,” says Sharma. Once again, Abidi and the NCPEDP worked with the government to draft a disabilities question with a representative group of people. The question was accepted, placed in the survey form, and even moved from question 15 to 9. “We were also part of the training exercise to make sure surveyors asked questions the right way. In the end, we didn’t get the data we hoped for but we were able to be a part of the massive on-site training exercise. And through it, I personally began to understand our collective challenges, and began to appreciate the realities of our country even more,” she adds.
During the tail end of these two campaigns, Sharma also returned to school at Maryland to firm up her skillset in policy. She was able to juggle her studies with her continued involvement in NCPEDP, and DPI’s efforts. In 2016, she returned to India, and landed a position at the U.N. office in Delhi as their disabilities expert. Most of her time now is spent supporting the implementation of the 2016 disabilities bill in collaboration with the government, including a new campaign called Accessible India – Empowered India.
Each morning, Sharma makes a habit of scanning the media for news on disability issues both national, and international, as well as matters related to development. “For example right now the government is discussing the budget for next year; I went through the entire document to see what is allocated to disabilities (increase/decrease); I also look at what is happening in the U.N. globally on inclusion issues. The World Health Organization (WHO) recently passed a resolution on access to assistive technology, and this has an impact not just for the WHO but UNICEF, ILO, and other agencies,” says Sharma.
In 2015, the U.N. came out with a set of ambitious Sustainable Development Goals (SDGs) through 2030, with the intent to leave no one behind. Sharma works within the U.N. team to adapt these agenda items to the Indian context, and makes certain disabilities is not overlooked. There is also an effort to ensure that disabilities is part of any evaluation as an indicator. And now that Sharma works for an organization that deals with advocacy on several fronts, she professes she is compelled to remind others that disabilities has an impact even on such matters as climate change, and disaster relief. “She is an individual of great fortitude with a relentless commitment to changing the world. She brings this approach to her interpersonal interactions and the way she engages the world outside of the office. Individuals like her are bringing new dynamism to the disability rights movement by ensuring that it becomes part of every conversation,” agrees U.N. Program Officer, and colleague Nabila Jamshed.
“Her international exposure to the larger development discourse makes her one of the very few people in India with expertise on disability that overlaps with other human rights issues. She continues to be a great ally of the disabled people's movement both in India, and abroad,” adds Javed Abidi.
Indeed, Sharma is the first to tell you she is passionate. She reads policy papers on weekends, and regularly works in the evenings. “Because this field is evolving, there is a lot of work to be done, and I find it helps to stay connected. I work with civil society, and the movements there to see what people are talking about. This informs what we do,” says Sharma. “When I talk to anyone, including my niece and nephew, I discuss disabilities, differences, and the importance for us all to be able to understand others. In India, we are not exposed to diversity as much as we should be, and even when we are, we don’t talk about it. In the end, inclusion affects everyone. As we witness our population aging, we get a glimpse into the full impact of having a functional limitation. We also need to look at disability with a larger spectrum, where impairment can be physical, mental, psychological or sensory including a cancer survivor or someone on dialysis. This understanding of disability has not gained ground here yet,” says Sharma.
It is only fitting, though, that Javed Abidi, the lion of the disabilities movement, have the last word. He passed away suddenly at age 53 this month. In this, his last interview on March 2, he imparted a poignant, and fearless message. “It is not a question of traveling to or ‘visiting’ beautiful European capitals but an honest question about getting our voices heard. And heard not just to tick mark a box - but for our voices, our views, our opinions to matter in the larger scheme of things. We should be at the table, inside that room. Why should that table, and that room be in Geneva or Brussels or Vienna or New York? Why not in Nairobi or Johannesburg or New Delhi or Bangkok? I see these as historical mistakes that need to be corrected. Someone must speak up. Someone must challenge the status quo. I decided to do exactly that. As you can imagine, I have not gained much popularity in these charmed circles, but in countries of the Global South I have gained love and acceptance. And mind you, this is 80% of the world. I may not have been successful in changing the disability global order but at least, I succeeded in shaking it up.”
(By Anna De Cheke Qualls)(Photo credits: Dorodi Sharma)