We have now been in Kenya for almost a month and practically the entire time has been in Nairobi waiting for the the bike to be good to get back on the road. I hope now that in the next few days the wait will be over and we will no longer be mazungus (white skinned) in a mutatu (mini bus public transport)
So what has happened in this last month? From an autism perspective, we have met with a couple of charities in Nairobi. The founder of Autism Society of Kenya and principle advocate in Kenyan government, Felicity, met us for lunch and we found out about the remarkable progress that she has made in the last 10 years in terms of getting recognition for Autism in the Education Ministry, and on the day we met, how she received her first email from the Health Ministry acknowledging the need for a committee to be established to identify the needs presented by autism. Felicity has also been involved with outreach programmes but is constantly struggling to find sufficient funding to continue this work.
Knowing the struggle to get any recognition for autism in Africa, it was nothing short of a miracle to hear her story. She puts much of her success down to her previous involvement within government (from a nutrition education standpoint) which has helped her to understand the process, and effectively identify the contacts, follow the right processes, and use her her existing reputation as an expert to ensure that she is heard. Behind all of this however, is her drive an commitment to establishing an effective support system for autism that springs from her grandson’s diagnosis. Indeed, it was only through taking him physically to the registration office to register the charity, that she was able to convince the registrar that autism was real so that the charity would be registered.
I also had the opportunity to meet (albeit briefly) another star on the autism scene in Nairobi, James. Having worked with children with autism in New York, he returned to Kenya committed to helping families affected by autism. Setting up the Autism Support Centre, James works to help parents by bringing them together, providing information, and helping to apply pressure to get more support for their children. I was kindly invited to attend a parents group on a Saturday morning to speak a little about what Sofia and I were doing. I wasn’t the only speaker, as other parents where also invited to speak with the subject of discussion being Autism and Sexuality.
It was a wonderful experience and really interesting to hear about the cultural challenges that parents were facing and wonderful to see a couple of the speakers being fathers, as well as a number of fathers in the the audience. On this particular subject line major concerns included sexual abuse of the child due to their increased vulnerability, and accusations of harassment (perhaps hugging strangers, or staring inappropriately) in a country where very few people outside the community have any knowledge or understanding and the law does not take any account of disability when considering a case should it be brought to court. The primary message however was hope, hope for the mothers who’s husbands refused to be involved, hope for parents concerned about the future and how they will cope, hope that despite autism, that into adult life there was every opportunity for their children to experience normality – as one parent put it: I am still hopeful that my son will find love and get married, even if it means his wife will live with us I will be a very happy man.
All in all, this time in Nairobi has been about interesting people. We have been staying at a major overland rest stop and mechanic shop, and whilst Sofia has been doing her utmost to make up for lost TV time both past and future, I have been regaled with wonderful travel stories – from the guy who was asked for the police report for his stolen car because he may have stolen it from himself, to the couple who seemed to have more than their fare share of break downs and improvised solutions like using margarine as grease, draining a pond of water because they were stuck in it, and a ranger vehicle running out petrol on them as it was coming to rescue them from the bush! But the time has definitely come to leave, as I become more frustrated with the stagnation and concerned about the finances, and judgements are starting to be made about my lack of control over Sofia’s TV obsession by the longer term punters of the Jungle Junction establishment. Judgemental strangers is part of what it is to be a parent of autism, as few people take the time to find out more about why things might be the way they are and even less interested to accept autism as a valid reason to any behaviour that they personally disapprove of. Yes I definitely feel it is time to go! 😀
Please donate to help us raise awareness from autism – with the cost of fixes to the bike we are now very low on funds, so please donate even a couple of dollars and it will see us getting a few extra kilometres down the road – http://uk.virginmoneygiving.com/charity-web/charity/finalCharityHomepage.action?charityId=1005498