M. Kelter, Interviewer
Content note: mentions of restraint, ableism
Netplus Kenya has been hosting an online series of moderated discussions in an effort to address high levels of stigma against people with disabilities there, stigma associated with long-standing cultural practices.
This series is called the Watoto Wetu Initiative. It’s next installment is this Saturday, August 28th, and will feature autistic activist Karen Muriuki sharing perspective on the urgent need to minimize life-threatening stigmas so that families can begin improving outcomes and quality of life for autisic people and other vulnerable communities.
I communicated with Karen to ask about this speaking engagement and about the challenge of sharing information in areas where traditional beliefs define how many perceive and react to autistic differences.
M: What is the main theme of this event and who is the audience these presentations are intended to reach?
Karen: The event is about the need to protect people with disabilities in Kenya. I will be speaking on social protection of disabled individuals and asked questions by the moderator. The audience is both medical professionals and parents, but it’s also open to the public because we want full participation in this.
M: To what degree is autism known about or discussed there?
Karen: Unfortunately, not much awareness is done here due to society’s perception of autistic individuals, as well as how the media portrays autistic people. [Autism] is viewed as a curse, as possession by evil spirits, or the result of bad marital negotiations and bad parenting. Stigma has been and is still rampant here. There’s a little bit of improvement but still it is terrible. And they ignore those with hidden disabilities such as autistics like us which is really sad.
M: Are you gathering most information online, or are there conversation groups of any kind?
Karen: Mostly on the internet and also from my medical records. I found a report from a paediatric doctor who diagnosed me as autistic, it was my self discovery moment in my twenties because nobody in my family had wanted to tell me that I was autistic due to taboo, shame and stigma.
M: What were the types of information and resources that you found to be most helpful, in terms of understanding autism and your own experiences with it?
Karen: I found Autism Speaks first but later felt uncomfortable with their rhetoric. I decided to look for autistic-led articles and watch YouTube videos from other autistic people who’ve experienced masking, emotional abuse, and feeling misunderstood by neurotypical family members.
M: Have you been able to locate other autistic activists in Kenya?
Karen: We were three but recently we have added a fourth one as well. There are autism groups here but they are parent led.
M: Do the four of you communicate regularly with one another?
Karen: Yes, on a daily basis despite them having struggled like me in terms of acceptance. We support one another in this.
M: As you share information about autism in a public way, is there a risk of backlash from your family or from others?
Karen: Oh yes, definitely, from non autistic family members who still do not understand me and my advocacy journey.
M: Is there any way people can help your efforts there, in terms of social media support?
Karen: You can highlight the plight of autistic people in Kenya, especially in rural areas where many autistic people are kept hidden, some are kept tied to trees. It helps for information about autism in Kenya to appear in blogs and videos.
M: Would you like to introduce yourself or share any other thoughts about your activism?
Karen: I am Karen Muriuki, an autistic self advocate and activist from Nairobi, Kenya. I tell you educating the masses here isn’t very easy due to society’s mindset of disability, but when we educate them from our perspective in layman’s language, then they can begin to understand why awareness is so desperately needed here, especially in rural areas of the country.
Karen will be speaking Saturday, August 28 between 7pm and 8:30pm GMT +3 (9am PT/noon ET). If you would like to follow the event live, here is a link with the details:
Follow Karen on Twitter: @karen_muriuki