“No matter the challenges you face, your dreams are valid”
To date, Abby has completed a 400Km, one-month long walk around Mt Kenya, speaking at 5 public community events on the challenges and opportunities autism presents, reaching over 500 parents, professionals, teachers and carers. Her next project is a 2000Km, four-month long walk across Kenya, where the level of understanding and support for autism is very minimal, and during which she will seek to change this through her actions and talks. Abby, born in Nairobi, was diagnosed with Asperger’s Syndrome at the age of 13 while living in England for her school education.
Autism-Europe: Can you explain to us a bit more about the initiative “Autism Walking”?
Abby Brooke: It is a project to raise awareness, acceptance, understanding and support of autism, done by walking. Walking is how I personally like to meditate I can say. So it is walking with camels carrying the bags. Walking is a much more personal way of dealing with such subjects, and it is a very personal issue for me. Walking and connecting with people on a one-to-one basis, not just driving to a place. And the people I meet on the way they asked me ‘What are you doing?’, ‘Why are you doing this?’ You meet so many people, not just at workshops but on the road too.
I walk with three camels and two guys who help me with the animals and with the bag and keep me company. We started this walk one month ago. Sometimes people can join a walk for a weekend, or they can accompany us the whole time.
AE: What is the biggest impact you have had so far with your awareness raising?
AB: I help people. On the last walk, the one where we walked around a mountain, towards the middle of the walk, people beyond our planned route said to me “I heard what you are doing. Can you help me? Can you give me a contact for the EARCs (Early Assessment resources Centers) in that particular area?” So just by being able to help and doing what I can, I think that this makes a big impact.
For the parents who ask me, I give them little tips about things that they can do. In the evening, people who look at me and talk to me during the walk, they just come to me and say “you need to camp, come here with us!” and there we are able to talk longer about how you can help, what you can do and why education and support are important, and just little things like self-understanding, self-esteem, supporting a person in their development, and not just looking at the negatives.
AE: What are your next projects?
AB: I am still looking for sponsorship for my next walk. But it is a 2,000km walk that will take 4 or 5 months. In certain towns that I’ll pass through I will be joined by Autism Awareness Kenya (AAK) and SEP (Special Education Professionals), my two partners. During my previous walk, they came up and we gave workshops to the communities, talks on autism, disabilities and inclusion. These are rural areas that do not get much support, nor much education and awareness on any disability.
AE: What were the topics raised during those workshops and the profiles of the people who attended?
AB: They need to be more aware definitely, and accepting, of course. We address questions such as “what is autism?” “How can I be helped?” What can we do? Just general questions like that. We meet a lot of parents, teachers and professionals, that’s mainly the audience. I am sure that we have had people who might be given the diagnosis or persons who are on the spectrum and they don’t know.
AE: Are you in touch with the autism community in Kenya?
AB: I have volunteered for AAK, doing events like World Autism Awareness Day events and awareness projects with them and with SEP just by myself talking about my thoughts. There are very few people who are open about their Asperger’s, but I know a few. I am sure that there is a big community. But it is not really a topic of discussion. No one really talks about it. By walking, I want to set up a support group for adults with Asperger’s. Sadly people look so much at helping the children that there are very few services for adults.
AE: What challenges do you face in your daily life as a person on the autism spectrum? And, in general, what are the main challenges faced by autistic people in Kenya?
AB: There is a lot of non-understanding. There are certain things I wish I was better at or better at coping with. Lack of understanding. This is also why I wanted to do something here, to show the real side of it. “It is about a real person, not what you see in films like ‘Rainman’”.
In Kenya, there is a lot of stigma, very much a lack of awareness and lot of discriminations still happens. And of course lack of support. Support is coming, it is growing, but sadly a lot of the time it is based on people’s level of income, and the majority of Kenyans are poor. So even if they have support they cannot afford it. So support is growing here but a lot of people just can’t afford it.
Autism and other disabilities in Africa
Support for disability in Africa is still lacking, more so in the rural, poorer areas, where the means of education, support and understanding are lacking. Often a child born with disabilities will not receive any schooling. Stigma and discrimination are high in some areas. False beliefs surrounding people with disabilities may favour “harmful practices”, sometimes linked to witchcraft.
AE: How did social media help you to recover your self-confidence and start to advocate for autism?
AB: Firstly that was just a name for me “autism”. I knew that name “autism” but… My mother had books about this but they were written by doctors and professionals using almost negative wording. It was so much not like me. It was after I came home from Australia in 2011, aged 27, that I really started looking into understanding my diagnosis. Until then I had never really wanted to “accept” it. Having hidden it, and it being my secret through most of my life due to the stigma and discrimination that came with being different in Kenya, I joined a few groups online.
I made some amazing friends and I got to realise that there is not one set way with autism, it is a whole. Everyone is different and not all the people are the same. It doesn’t mean you can do anything. It means you will have problems but just maybe, with more understanding and with more acceptance, those problems become smaller. And there are so many self-advocates now. That also gave me the courage to speak and tell my story because every story helps. When I was still learning about autism and Asperger’s syndrome I read stories from other people and that helped me. It is passing the torch in a way.
AE: Do you have a message for other autistic people out there?
AB: Just accept the challenge. For me autism is a constant challenge, and I would like to think that I can beat it all. It doesn’t define who I am. I have problems but I can get through them.
You can support Abby’s initiative by sponsoring 5, 10 or 20 km of her next walk “Summit to Sea”, a 2000km, 5 month long walk within Kenya.