Raising a child with mental or physical differences often comes with challenges, especially if the community does not accept the child. I have seen this first-hand through a couple named Farai and Abigail in Zimbabwe who have raised their child with autism spectrum disorder for the past 27-years. Because learning difficulties and mental health issues are so misunderstood, some of their relatives called their child deranged and accused Abigail of causing this condition through witchcraft. They suggested the family visit a traditional doctor to cleanse their child. At the age of two, Farai and Abigail noticed that something had dramatically changed with their son Lennon. He could no longer speak, and a doctor said that Lennon might have recently suffered brain damage but couldn’t explain the source. Twenty years later they received a correct diagnosis, Lennon has autism spectrum disorder, or a broad range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication. In the meantime, Lennon’s condition tore the family apart and changed the lives of Farai and Abigail. For instance, an aunt who had bought Lennon many gifts at his birth was later accused by other relatives of lacing the gifts with juju. They never saw her again for over twenty years. Abigail left her job to look after Lennon. Various people in the community also accused her of casting a spell on her child. As Lennon grew up, the only schools that they could afford refused him enrolment. The only option was home schooling. But both parents have no teaching skills nor experience with autism spectrum disorder. Over time, both parents developed their own language and ways of communicating with Lennon. By his teenage years though, the only persons who could communicate somewhat effectively with Lennon became his two siblings. Just going for a walk could be challenging. One day during a walk, Lennon went after a piece of glass along the side of the road and soon a tussle broke between father and son. Passers-by looked on, equally bemused by the drama. ‘He has smoked weed again,’ one passer by remarked, referring to Lennon. Farai and Abigail were to learn that some in the community thought Lennon’s condition was a result of drug abuse. Farai managed to overcome Lennon and they turned back towards home. Within an hour of arriving at home, Lennon went missing and no one could find him. Later that night, police knocked on their door. They had a bruised and bleeding Lennon. He had been beaten up by some people, the police said, ostensibly because he had snatched some food from them. Lennon was so happy to see his mom. As he and his mom hugged, he put his hand in his pocket and took out the same piece of glass that his father had stopped him from picking up. A smile brightened his face. He had walked back to find it and during that walk, had become a target for bullies. Lennon’s story of persecution, being misunderstood and not provided with the resources he needs to thrive is not unique. Persons with disabilities are usually among the poorest members of society and lack access to opportunities, resources, and services to achieve their potential and cater for their needs, including enjoyment of positive health and independence. About 15% of the world’s population have a disability of one form or the other. Eighty percent of these are in developing countries. In Rwanda alone persons with disabilities represent about 5% of the population and face challenges in accessing services, opportunities and resources. For example, only 68% of primary age children with disabilities are in school, far lower than 89% for those without disabilities. However, since the ratification by Rwanda of the United Nations Convention on the Rights of Persons with Disabilities and its Optional Protocol in 2008, good progress has been made in protecting the rights of persons with disabilities through legislative reform and the design of supportive programs. But even in an environment with a strong commitment to inclusion policies, the self-esteem, performance and job satisfaction of people with disabilities are profoundly impacted by attitudes of society. Negative attitudes in social circles are often the greatest barriers to inclusion and career advancement. We can change the prospects for Lennon and people like him. Some of the measures needed can be as simple as using social media to reinforce messages on how to support persons with disabilities as well as volunteering or donating to places and families who are taking care of people with disabilities. If we shift our focus from the disability to the unique abilities, we will be able to create a more dignified world for people with disabilities. The singer, Susan Boyle, film director, Tim Burton and Bill Gates, former CEO of Microsoft, are among many who show that with the right support, people with disabilities such as autism spectrum disorder can live a full and productive life. Farai and Abigail’s experiences have been painful, often enlightening but never one they would wish on anyone. Lennon is now 27. For him, life is generally and increasingly difficult as he struggles with forced confinement and a frustration that no one understands him. I believe in the power of prayer, modern medicine – and in our society’s ability for compassion. I have no doubt one day society will understand autism spectrum disorder for what it is and provide the right resources, support and understanding to those with it. I just hope it will not be too late for Lennon by the time they do. Maxwell Gomera is the Resident Representative for the United Nations Development Program in Rwanda and a Senior Fellow of Aspen New Voices.
