African Leaders Forum on Disability: “Disability is not inability”
February 2014 - Despite the looming grey sky overhead, the crowds gathered excitedly for a football match in Civo stadium, Lilongwe’s main stadium on a Sunday afternoon in February. Although football is a popular sport in Malawi, a Southern African country of over 15 million, this was an unusual match. Not only did the teams bring together football legends but also a new type of player, athletes who despite their intellectual disability, were demonstrating that they could compete with the best.
The football match was part of the first ever Africa Leader’s Forum on Disability, organized by the President of Malawi, Joyce Banda and Special Olympics International, the world’s largest sporting organization that is dedicated to children and adults with intellectual disabilities. The aim was to send a strong message across the continent that as the President herself had coined “disability is not inability”.
As Innocent Chilongo, a young man in his early twenties opened the event with a prayer, he himself a special Olympic athlete from Malawi, acknowledged this was a unique day. Here he was, having grown up with an intellectual disability, that still kept many like him, hidden and shunned, speaking before the Vice President and many dignitaries in a crowded stadium. His speech echoed a new chapter in the rights of people living with disability in the continent, as he called for respect, dignity and inclusion.
For many in the crowd, as they cheered on players, there was little way of telling professional players from the special athletes.
The Forum, held the following day, was an opportunity to bring the issue of disability to the forefront of the continental political agenda and build momentum amongst African Ministers, development experts and disability activists.
The President of Malawi has proven to be a champion for the rights of people with disabilities and in her first few weeks in office, passed a landmark Disability Act, enshrining into law equal rights and inclusion policies for people with disabilities in Malawi and also ratifying the Convention on the Rights of Persons with Disabilities in 2013.
To demonstrate her commitment to change the thinking around disability from charity to one of human rights and development, she also appointed Rachel Kachaje, once an activist on disability and herself a polio victim confined to a wheelchair, the Minister of Disability and Elderly Affairs.
“As a person with disability, I have spent my whole life breaking down barriers. My hope and dream for the future of people with disabilities in Malawi and across the world is that there are no more barriers to break down,” she said in her opening remarks. “We should insist that people with disabilities, live free from humiliation, misunderstanding and myth.”
Although 36 countries have ratified the convention in the continent and many have policies and laws in place, the challenge has been how to translate them into real change on the ground. As Joyce Banda, the President acknowledged the challenge to this action is in part because stigma and discrimination has sought to hide, shun and exclude people with disability.
“There is something about the plight that faces individuals with disabilities, including those with intellectual disabilities, that is compounded by an entrenched stigma that has endured, unjustly, for centuries and centuries. Before we can tackle the environmental barriers, this stigma must become yesterday’s news” said President Banda. “Political will is a critical element, and it is one that must have sustained commitment. “
The event was marked with a series of panel discussions with experts that focused on different dimensions of the problem from stigma, to health related issues, to use of sports as a vehicle to break down barriers, to data collection and evidence.
Dr. Tim Shriver, the President of Special Olympics, who with support from the Golisano Foundation, Lions Club International, and UNICEF, jointly hosted the Forum, made it clear that the issue of addressing the rights of people with intellectual disability, had to be a critical part of the broader development agenda and be well positioned in the discussions on the post 2015 agenda.
“People with intellectual disabilities remain the most marginalized and discriminated against population in the world. This transcends national, cultural and social economic boundaries.” said Dr. Tim Shriver, whose mother founded the Special Olympics in the United States to use sports as a way to address discrimination and support families living with intellectual disability.
Special Olympics had already expanded its presence in Africa now working with local volunteer coaches and athletes in 20 African countries, many of whom came to the Leaders Forum. For many it was the first time to connect with others also intellectually disabled and to share experiences on how to expand their networks. .
Last year, the Ministry of Disability and Elderly Affairs, with UNICEF, launched a situational analysis of children with disability in the country. The findings revealed that Malawi has an estimated 200,000 children under the age of 18 are living with disability, although this is thought to be understated.
It also revealed that not only are they often kept hidden from society at large but there was also lack of consistency in definitions, especially on intellectual disability, which was clumped together in a category of “other” and represented 35 percent of the total.
The findings demonstrated those children with disability, were clearly the most excluded from society, and often due to discrimination denied their right to adequate education, health care and opportunities. Often, children of disabled parents were forced to bear the brunt of workload within the family, while parents of children with a disability, often fell deeper into poverty as had to divide their time between care giving and providing for their disabled child.
The need for better evidence and data was echoed by many speakers as critical avenue to address social exclusion. Norah Croce, spoke of the work the Leonard Cheshire Disability and Inclusive Development Center is doing with UNICEF, to get data collection integrated into existing avenues like in UNICEF’s multiple cluster surveys as well as through the EMIS, (education management information systems). She argued that it was not just about having better data systems, but how that data was used to inform decision making and identify where the needs were greatest.
Kanyankore Marcel Rudasingwa, the UNICEF Representative in Kenya, gave a clear message that the focus needed to start with children. He argued in his key note address that social inclusion can have a life changing impact in the life of a child and determine the trajectory of their future.
“The inclusion of children with disabilities requires a change of perception: Recognition of children with disabilities as having rights, an understanding that their active presence and voice will improve society as a whole. They need to be a part, rather than apart,” said Kanyankore Marcel Rudasingwa, UNICEF Representative to Kenya. “To do that we need to start at birth. When a child is neither counted through birth registration nor diagnosed of their aliment, it is much more difficult to know where they are, support their survival and growth and guarantee they will access the types of services they need.
He highlighted that the growth and expansion of early childhood education and services in many countries has already presented a great opportunity to train the caregivers and teachers with the diagnostic and identification skills. Early diagnosis has proven to be a good way to treating some impairment, along with empowering parents with knowledge and preventing some complications later in life as well as often providing them with extra financial support to cope with the pressures and time to support a child with disability instead of placing them in an institution.
The Forum ended with the ambitious goal of forming an alliance of leaders from the continent committed to making sure the voice of those with disabilities grows and is put firmly on the development agenda of the continent. It agreed that to reverse the trend of exclusion, build better data on types and causes of disability, as well as systems to track access to services so that those with disabilities have a right to a fair share of resources.