Interview by Jenny Bristol
Illustration by Rebecca Burgess
Abby Brooke is an autistic woman living in Kenya who walks long distances, often hundreds or thousands of kilometers, to raise awareness and acceptance of autism. She also works hard to educate families on what it means to be autistic, all with her trusty backpack and pack camels (and sometimes assistants) in tow. Her long walking voyages have raised the visibility of her work, helping her share her passion for autism advocacy with countless communities, families, and individuals in Africa, and she’s been interviewed by many press outlets over the years. She continues to plan new walks, including a 2021 trip in Kenya called Summit to Sea, where Abby will walk from a mountain to the ocean, giving informational workshops along the way.
Abby is passionate about her autism work and travel, including learning about other cultures, and is happy to able to combine those in her life’s work. Along with the rest of us, she has found that being autistic makes some parts of her work harder, and some parts easier. Also like many of us, she was bullied as a child, and continues to work through that trauma. This look into her life and vocation in Africa provides an important perspective that the rest of us can benefit from examining.
What does a typical work/regular day look like for you?
Of course with COVID, a “typical” day has been flipped upside down, but pre-COVID, as well as working on my Walking Autism project, I devoted a lot of my time to caring for a young girl with Cerebral Palsy. With COVID, I’ve sadly had to stop my care for her. My laser focus now is on my Walking Autism project, raising money, generating PR, follow-up on emails and interview requests. I am also an artist; I make mosaic art pieces.
But, as is common with self-employed entrepreneurs, I never really stop working on my Walking Autism project and as such find myself working late at night answering questions from overseas where the workday is just starting.
When I’m out on the road, it looks very different. I have a more “regular” routine out there (but is anything ever regular on the trail?!). I’m up by 4.00 AM, break down my tent, and pack the camp. My two assistants and I try to unpack only what is necessary so break down is easy the next day—so it’s the little left-over items, which includes the morning tea (coffee for me)! Pack up the camels, wave goodbye to our hosts, if we happen to have any, and set off. We get a few hours walking in before stopping for breakfast somewhere, which usually attracts a lot of attention, which then allows me to talk to people about the project. A few more hours walking (and stopping to chat with passersby), a light lunch, walk some more, and usually by 5/5.30 we’ve found our camp, unpacked the camels, let them graze while we set up camp & cook dinner, sometimes we’ll have people come by the camp to chat, or to ask me questions, and by 8/9pm we’re (camels included) done for the day! – Party Central out there!
The days we’re having workshops, meeting media, and/or our rest days all look slightly different. But you get the idea.
I average 20 kilometers of walking per day out there.
What hobbies or interests do you have outside of your work?
Outside of Walking Autism and my love of camels, I have quite a few interests including reading (non-fiction/current affairs/reportage/journalism & history are my favorite genres), travel (both experiencing & reading about it), being creative, and of course my music. Music has always been my therapist!
How does being autistic help or hinder your work or hobbies?
My autistic ability to throw myself into my interests and hyper focus on things that interest me has helped me immensely!
I love learning, but hated school, because of the bullying I received. Compounding that, I was not taught in a way that I understood, so I was bad at school. But, because I loved learning, I’d teach myself certain things, and, because I could hyper focus on things and I was interested in them, I did learn. This is where I feel my autism helps.
What kinds of changes or accommodations do you make in your life to allow you to be successful?
I have always been very hard on myself in general, always pushing myself to do “more”—to go beyond—and ultimately, in the long run, this has resulted in burn-out. Since learning about my autism, while I don’t think I’ll ever stop pushing myself, I can give myself a break!
Also being able to know when I need to take a 5-minute break is super important!
Have you experienced discrimination or bullying because of your autism or autistic traits?
I have been bullied and ridiculed ever since I started school because of my autistic traits. Little things I would do, that seemed normal to me, yet I guess to everyone else weren’t. I didn’t know it then, but I learnt to mask early because of this; all I wanted to do was “fit in”—I always knew I was different but didn’t understand why, and it upset me when others picked up on it and correspondingly picked on me.
What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?
Probably the most important advice I’d give is to reach out; don’t go it alone—it’s hard!! Reach out, find other people, be they online or in person. Social media is wonderful for finding kindred spirits!
“Reach out, connect, and teach yourself everything you can! The more you understand, the kinder you’ll be to yourself. I spent 2+ decades alone, never speaking about my autism to anyone, because I had no one. The deep dark hole of depression was unbearable. Don’t do that!!”
Reach out, connect… Find your people, learn everything you can about autism and where/how you fit in, and things will be easier!
What advice would you give parents of autistic kids about the best ways to support their kids becoming their best selves?
Acceptance! Acceptance! Acceptance!
Acceptance is the beginning and the end! Everything gets easier with acceptance. Compassion and empathy must also be present.
Every child has certain things they excel at; look for these and encourage them in them, rather than putting pressure on them to do what they may find difficult. As time goes on, our world is becoming more open and we’re making more space for all kinds of talents and strengths. We don’t have to fit into society’s box!
What advice from the so-called “experts” do you think parents should ignore?
I think with all experts, take from it what you will. Learn but don’t base everything on what the experts say. Think. We are all unique… embrace and encourage that!
What was one piece of advice you received that helped you be comfortable with who you are?
I don’t know if I could pinpoint one particular piece of advice. The more I read, the more wisdom and advice I found and learnt. Each is as vital as the last. I’m still learning to be comfortable within myself. It’s a journey, but the more I read, the more I learn.
How do you think your perspective as an autistic person gives you an advantage when traveling and encountering new people and cultures?
I have been very fortunate in my life for developing a love and fascination for different cultures since I was a child. Growing up in Kenya, which is very multicultural, I was exposed to a wide variety of different people and cultures. This combined with my autistic passion of reading and learning about the world has come together as a strength I feel in my adult life. Through my various travels to different places, I have been fortunate to experience a variety of experiences that are outside of my own upbringing, but because I have done what research and learning I can, it’s easier for me to adapt to a situation.
This, and I usually travel very simply, alone with my backpack (nicknamed “toto yangu” which means “My Child” in Swahili). I keep my travels easy, so it’s not too overwhelming. A few plans and places, but all the in-between, I just see where it takes me!
This is an interesting question though, as I have never really thought of it in-depth, I wonder what the differences would be in terms of autistic traveling vs. non-autistic travel… open to thoughts.
On the whole, though, I think a desire to see more of the world and a respect to wherever you go, the people and the culture is important in travel, whatever your perspective.
I have been long fascinated with North Africa & the Middle East, so when I can, these are both places I long to explore!
How has discovering the autistic community online been helpful to your mental health?
“For the first time in my life, I felt validated. I made sense. My entire life I always knew there was something different about me, but never quite understood why.”
When I joined a small Facebook group for autistic women, it was absolutely life-changing in the best possible way. Interacting and communicating with these women, I was able to understand so much. I asked so many questions about anything and everything and god bless these women, they answered them. It was immense in every way for my mental health. I’m still in touch with a lot of these women and I’m thankful to each one.
In what ways have you had the opportunity to help disabled people in Africa?
From my experiences of growing up autistic here, the hardships I experienced, the lessons I had to learn for myself, and finally the understanding and accepting of myself, combined with the knowledge I acquired regarding disability in Kenya (and much of Africa), I wanted to do something to improve the situation. This is where the idea for my project Walking Autism began in 2011, raising awareness, acceptance, and understanding of autism within Kenya and eventually Africa, by walking long distance with camels as baggage carriers. On these walks, I visit rural communities (who disproportionately lack access to autism education and resources) and I talk with them about autism.
Since Walking Autism’s inception, I have walked 1,000 km across the country, met and been able to help hundreds of people, given talks and workshops, and been interviewed on radio, TV, and various podcasts.
By sharing my story, I have had the amazing opportunity to share what I learnt and am learning in return. Something I’ve always believed in is, as adults, we have an obligation to do something for the young, do something to make the world better than you found it, be it big or small. With Walking Autism, I found my passion.
This is also my journey; I am still on the path to unconditional acceptance. I won’t lie and say it’s easy—it isn’t. Years of low self-esteem don’t vanish overnight, but being on the journey is helping.
What were the most surprising parts of your long-distance walks? What were the most challenging?
The most surprising was seeing people further on up the road know who I was and what I was doing. Usually these are mothers with disabled children. Because my project has mainly catered to the more rural and impoverished areas of the country where awareness and understanding is still minimal, there isn’t a lot of support, so when I’m able to help someone while on the road, this is both wonderful and surprising—surprising because I wonder how on Earth they know about me (though honestly, I shouldn’t be, as a woman walking two camels isn’t exactly a regular sight)!
Wonderful because that’s why I’m walking—helping others. Believe me, when it’s raining and cold and both you and the camels are sliding in mud, I do question my own sanity! – So when the moments do come up; it makes it all worthwhile!
Most challenging are the days that seem to never end! If I haven’t slept well, and would much rather be in bed than walking, that’s a challenge! – As are the times when I get overwhelmed and “me time” is hard to come by!
What do you hope most that people take away from the talks that you give?
The main thing I hope people take away is that autism and disability are a valid part of the human existence. Acceptance, understanding, respect, and dignity are what we all need and deserve.
How is the planning going for your Summit to Sea project?
I am currently working on my next walk, which is a 5-month, 2,000 km walk from central Kenya to the coast and back. I will be holding five full workshops along the route, in the bigger towns, as well as the talks I have with people while walking. I plan to start by June/July this year.
Right now, I’m knee-deep in finding corporate and individual sponsors, as well, and all the other logistics, meeting with potential sponsors, connecting with supporters, working on logistics, etc., the list goes on!!
What are the best ways for people to connect with you?
- I do have a Walking Autism fundraising page where people can sponsor a kilometre— bit.ly/abbywalks.
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