I met the exceptional, creative, and compassionate Ms. Abby Brooke quite a few years ago on Facebook through some other autistic women friends and we immediately formed a friendship. Abby resides in Kenya and has founded an organization to raise much needed autism awareness and acceptance by walking on foot with her camel companions to different communities. In the non-Western world, there is not very much information, let alone much awareness about autism, and Abby hopes to change that in her country and throughout Africa by educating others in a positive and encouraging way. She is also an artist, outdoors enthusiast, DJ, photographer, and overall Renaissance woman in her own right. I recently asked her some questions about her organization and herself. Enjoy! ~ Jen Elcheson
Jen: Hi Abby, can you share how you discovered you were on the autism spectrum? How old were you when you received your diagnosis? I do recall that you were in the U.K. at the time and got diagnosed by a well-known clinician.
Abby: Hi Jen… Thanks so much! It’s not often I’m interviewed! Well, because of living in Kenya, and the issue of Autism, or any other disability was still so rarely talked about, or even known, my diagnosis came a bit later than most people.
I was 13 when my mum took me to the National Autistic Society in UK to be formally diagnosed; the various doctors that we did have at home didn’t really understand much about Autism, much less “high functioning ASC”.
I don’t remember much of the assessment, but I do remember being given a few little tests to do and Questions to answer. I had always known I was different, I just didn’t know why. My difficulties at fitting in, making friends (and keeping them) and ‘weird’ little ticks always kept me a little apart from the rest of the crowd.
As for the well-known clinician you mentioned… I didn’t know about her until much later in life, but it was Lorna Wing (though at the time, she just seemed a very nice lady!)
Jen: Tell me a bit about your organization Walking Autism and how you hope to impact change in your country.
Abby: ‘Walking Autism’ is a project I started in 2011, but due to other work commitments and my project partners also having work commitments, it hasn’t really been consistent as of yet.
Basically, the project is to raise awareness and acceptance of autism and other disabilities through Africa by long distance walking through the continent, with camels carrying the luggage -sounds weird, I know!-
I have already done 2 small walks. One was a week long (150Kms) within north of Kenya and another was a one month long walk round the base of Mt. Kenya (400Kms).
The inspiration for the project started due to my love of travelling, and me wanting to see more of Africa. I have previously been travelling for a year round Australia, a few trips to UK and a year’s study in South Africa. Travelling is one of my hobbies! But I have always wanted to see more of Africa.
My main inspirations have been 2 of my favourite travelers, Ffyona Campbell and Robyn Davidson. (This being an Australian magazine, that name will be well known to a lot of people!)
I first read Ffyona’s book at age 15 (having done a sponsored walk already) and knew that was what I wanted to do in life. Robyn’s book came a little later, but just made the dream even more desirable … AND she had camels which just made it all even better! The walk I did earlier was with camels as well.
HOW I was going to do it was the question!!
It was after I came home from Australia in 2011, aged 27 that I really stated looking into understanding my diagnosis. Until then I had never really wanted to ‘accept’ it. Having hidden it, and it being my secret through much of my life due to the stigma and discrimination that came with being different in Kenya, I joined a few groups online and made some amazing friends. There was one group in particular, a women’s only group that became the start of my whole world opening up. These women proved to me that Autism was not the shameful secret I had always thought it was. Their help, advice and total acceptance literally saved my life and they in turn, became my sisters.
Through them, I worked up the courage to reach out to the Autism community in Kenya, where to my surprise there was an actual community, although not others Autistics/Aspies…lots of professionals, parents and teachers who were as excited to meet me, as I was them!!
By then I had come up with the idea for this project but was still hesitant to tell other people. The ‘go ahead’ to tell someone came after meeting and volunteering with a group of parents and professionals who had started an organization called AAK ‘Autism Awareness Kenya’.
After some volunteering with them on certain awareness projects and getting a deeper understanding on the issues facing Autism, and disabilities in Kenya, I felt I could do something of my own to further help the issues of Autism in Kenya. They agreed to partner with me and my first walk happened in April 2014.
Jen: By not living in the western world, the perceptions of neurodivergent people and neurodiversity in general greatly differ, so I am wondering if you can tell me how you are working towards shifting the dominant paradigm.
Abby: It is very different here, in terms of comparison to the western world. That is not to discredit the way things are here, we are behind yes, but we’re getting there. But yes, the general attitude towards Autism and disabilities in general in Africa is lacking.
In much of African culture, being disabled is still seen as being a negative thing, a ‘curse’ a ‘burden’ and is some areas, these children are thought to be under a witchcraft spell. This is more prevalent in the lower income/ rural families.
As much as in the western world, the level of support and systems are based on a person’s income, sadly. The wealthier one is the more one can afford, which to me is wrong, because a disabled child has as much right to a proper education as does a non-disabled child.
I’ve always felt that divide is wrong, so my project is focusing more on the rural, lower income parts of the continent and her people, which is also in part to why I’m walking. Walking means I get to meet and talk with people who I might miss in a car and meeting up with others I met on my previous walks.
I met people who were in need of help, but due to living in rural areas, and with very little income, they couldn’t get any.
I work with what we call the EARC’s in Kenya ‘Early Assessment Resource Centers’ which are government issued and are there to help parents who have disabled kids. They are in every county, so as well as talking with parents personally; I can send them further references from them.
Another one of my partners in this project is an organization called SEP Kenya. They are a group of registered therapists and professionals, and with them, we give talks and workshops along the routes
Usually when people meet me and I tell them my story, most don’t believe I’m autistic, mainly because of the stereotypical views than many people have about autism, so I like to think as much as I’m doing what I can to help, I’m also changing people’s views!
Jen: What is your mission statement and what goals do you hope to achieve with Walking Autism in the future?
Abby: I hope I can do something to help change the views on Autism and disabilities. Create a bigger understanding on what it means to be Autistic/disabled, and of course helping people to see persons with disabilities as worthy and being a vital part of society.
I plan to take the project across Africa, the walks growing longer starting in Kenya, but eventually walking right across the continent.
Jen: What have you achieved thus far with your organization?
Abby: So far, I’ve done two walks (within Kenya), a few public speaking talks, had interviews on TV, in print, and radio.
Jen: When do you hope to plan your next walk? I know we talked about it not being for a while because of upcoming elections.
Abby: Ideally, the next walk from the foothills of Mt. Kenya to the coast is 6 months, and 2000 Kilometers (1242 Miles). I would have already started this year (in my ideal world), but due to various issues, sponsorship, work elsewhere and Kenya’s general elections this year, I’ve had to postpone it. I’m hoping it’ll work in time for 2018.
Jen: What are your experiences in being an autistic woman in a society that still sees it as a dominantly male thing?
Abby: It is a challenge. As we all know, so much of what society see’s in the Autism world is the male side of it, but I think that is as much a problem here as it is anywhere else in the world. I think society has to start looking at Autism in a wider way.
Jen: What are some of the biggest challenges you face as an autistic woman living in a non-western country?
Abby: I suppose looking back on my life, if I had been born in a western world, my life would have turned out very different. Just in terms of earlier understanding of myself and who I am. I spent years denying, feeling ashamed, and hating myself because I didn’t know anything about autism, much less Asperger’s. I lost so much self-esteem, and self-worth due to this, and only now, 17+ plus years later, I’m only just starting the journey, learning who I am, and accepting my differences. And only now starting to love and appreciate the person I am.
But also, I think the challenges I’ve had can be a positive as they have made me the person I am today.
Jen: You are also a photographer, DJ, and artist, how does being on the spectrum inform your creative side?
Abby: As I learn about myself more, I’m also seeing how being autistic has really helped in my creative side. I have never been an academic, and that bothered me more in school and after. No matter how hard I tried on some things, I just couldn’t manage to get them done right. I lost a lot of confidence over this, other kids called me names like ‘stupid’, or ‘retarded’ and I started to believe them.
I’ve always been creative, in whatever ways, and yes the more I come to understand who I am, the stronger I’m feeling that Autism has hugely benefited me in my creative side
Jen: Thanks for taking the time to answer my questions. Do you have any last thoughts or anything you would like to share with readers?
Come share the journey with me!
Also check out this article: http://www.the-star.co.ke/news/2016/11/04/woman-walks-around-the-country-in-autism-awareness-campaign_c1444190
About the interviewer Jen Elcheson
Jen was diagnosed with Asperger’s Syndrome in 1998, back when very few people were diagnosed, let alone females. She has devoted her life to supporting and mentoring children on the spectrum. She currently works as an Education Assistant for the public school system, and as an assistant caregiver at a small daycare. Jen also runs an online support group, has written articles for AAN magazine, and is a lifelong music fan, especially metal and classic rock. Jen lives in northern British Columbia in Western Canada with her two ball pythons.