Benison had organised a contact for us with Kerri, an American special needs teacher now living in Moshi, who was Director of Programs for Connects Autism Tanzania, the peak autism NGO in the country. Part of what we wanted Sam and I to get out of the trip was a better understanding of how autism and disability exists and works in Africa, and this contact was an extension of experiences earlier in the trip, such as meeting Petra and Michael in Windhoek, and Godfrey and Manga on the Zambezi.
Kerri works with Mama Grace, an inspiring Tanzanian woman who is the mother of Erick, a 23 year old man with autism. As a child, Erick’s erratic behaviour and lack of speech (as an adult he remains largely non-verbal) caused him to struggle to get any education at all, despite Grace’s best efforts. Her advocacy largely fell on deaf ears, despite her strong belief that Erick did have skills and intelligence that were not being developed.
He was placed in a special education unit that was a kilometre away from where the school bus dropped the children in front of the mainstream school. Despite the challenge of having to walk a kilometre by himself to the other school, Erick coped.
After a few years, a further setback occurred. Some of the parents of the other children in the school, concerned that somehow hanging around a disabled child put their own children at risk, encouraged their children to kick Erick off the bus; every day. Now Mama Grace had to figure out a way to get him to school, and she purchased a bike for him, and worked to teach him how to ride it to school alone each day, a massive inconvenience for the family, one that none of the other parents had to face.
At age 18, Erick faced an uncertain future in a country where there was no vocational training for young people with disabilities. Floundering in an environment which was re-teaching him basic academic skills he already had, Erick was going nowhere, and Grace knew it.
The 2010 Football World Cup was on in South Africa, and every television set in the city was tuned constantly to football. Erick was in the habit of scavenging precious glimpses of television shows he liked by peering through the windows of shops, but he didn’t like football.
The shops ignored his pleas to change the channels, a refusal he couldn’t understand. In his frustration he through some rocks through the store windows, which caused a furious reaction. A vigilante response group was paid for and organised, with the intention of killing Erick. Grace, alerted to the danger by an informant, hastily convened a community meeting with the police and successfully prevented a disaster.
Still, Erick struggled. Grace, in her tireless advocacy, refused to give up. When she met Kerri, things started to fall into place. With her new ally, they developed not only the beginnings of a vocational training program for young adults with disability (with Erick as their first graduate) but also continued to fight for awareness, opportunities, and basic human rights for children with special needs in Arusha and surrounding districts.
In Africa, there are layers of challenge, hurdles to leap over, that children and adults with special needs and the families that support them have to overcome that go beyond those faced in developed countries. Foremost of these are cultural elements.
In Africa, it is often (falsely) assumed that children with special needs cannot learn. Why place such a child in a school when that individual is taking up resources that another child is being denied? Secondly, it is commonly believed that the disability is caused by the family themselves; a sin, a misdemeanour, some piece of black magic or a curse. We had witnessed this back in Manga’s village in Zambia.
Finally, and bizarrely, disability is viewed by many as being contagious. This was a large part of why Erick was kicked off the bus. The other parents didn’t want their children to catch what Erick had.
Barriers, hurdles, unfair and infuriating, were thrown at these individuals and families. These all had to be overcome before people like Grace and Erick could even begin to start thinking about the other objectives and hopes that autism families in the developed world aspire to.
To be continued….
In the meantime, if you want to know more check out their website www.autismconnectstanzania.org