There are certain people who come into your life, and leave a mark. Their place in your heart is tender; a bruise of longing, a pulse of unfinished business. Just hearing their names pushes and pulls at you in a hundred ways, and when you try to define those hundred ways, describe them even to yourself, words are useless.
Alan Kendle left a mark on so many of our lives.
As an early influencer, he played a formative role in developing a sense of community around aphantasia, and helping clear a path for greater understanding.
Alan was an engineer who lived with aphantasia.
I have #aphantasia does this mean I can’t #imagine ? Nope I can imagine it’s just not #visually based#mindseye #visualisation #thought #thoughts pic.twitter.com/qpfd8vgylX
— Alan Kendle 📚🧩👨🏻💻 (@alan_ken) November 5, 2019
In 2016, while listening to BBC Radio 2, Alan’s wife Vanessa heard someone talking about a condition that prevents people from seeing mental images, effectively meaning that you’re blind in the mind. It was then Alan first heard that a condition he had lived with his entire life had a name, aphantasia.
“My wife heard about it [aphantasia] on [the] BBC and she told me about it,” Alan told TheJournal.ie. “I downloaded the podcast, listened to it and understood that’s what was going on in my head. I was surprised, I just didn’t see it coming!”
This discovery snowballed into an insatiable curiosity and ongoing investigation into aphantasia.
Alan started using his personal social media to ponder deep questions and encourage others to participate in the conversation. He was fascinated by his own inner experience, and that of others.
#aphantasia for me 👨🏻💻 I don’t see words in my mind, I don’t hear mentally things I am about to say 😬 wonder what others experience 👨🏻💻🧩
— Alan Kendle 📚🧩👨🏻💻 (@alan_ken) February 10, 2019
We never really discuss with others this world inside our minds maybe a dialogue is needed to enable understanding of experiences
Over time, he began collecting insights from people all across the world, detailing their lives with the condition. These stories became the basis for his first book, and the first book ever written on aphantasia: Aphantasia: Experiences, Perceptions and Insights.
While writing this book, Alan became an integral part of the aphantasia community online.
“He helped shine a massive light on what it means to live with aphantasia”, says Robb Williams, “and when I was looking for someone to help moderate the Aphantasia Facebook group, Alan was the obvious choice. He was a natural and took his role very seriously. His work behind the scenes contributed hugely to the success of this group and helped to keep it a positive environment where people feel safe to ask questions, and search for answers about aphantasia.”
Advocacy for aphantasia research and awareness is perhaps the topic that Alan is most known for among people in the aphantasia community.
Alan was keen that systems be put in place for diagnosis and individual discovery of conditions such as aphantasia. If children can learn about differences in visualization and have support to use learning techniques that fit their own circumstances, then it will be of huge benefit.
Alan had several other conditions which he was passionate about exploring, that he linked to aphantasia. Before he discovered aphantasia Alan did a lot of research into dyslexia – evidenced for example by a draft article he wrote on potential technologies that could help people with dyslexia read for pleasure.
Another condition that Alan spent significant time in his last few years researching, is Severely Deficient Autobiographical Memory (SDAM). SDAM is a condition which explains limitations in or lack of episodic and semantic memory. Alan realized that he had limited experiential and factual memories of his past, when compared to many other people. He explored his lack of long term memories, and his poor working memory, when writing his second book. Alan sought out explanations for his memory conditions and had tests with experts that backed up his experiences.
In his second book (yet to be published), Alan says, “Initially just working out what SDAM is seemed difficult, as the explanations I read were difficult to understand and to relate to my memory generally.”
His research and communication with others on the topic meant that he had a clearer understanding of his conditions, but there was much more he would have liked to explore.
In addition to his aphantasia and memory conditions, Alan was recently tested for and had a verbal diagnosis of autism:
@mrjamesob I have a few conditions #Aspergers #Dyslexia #aphantasia and one called #SDAM the thing is most people as adults will probably never know as if not pick up as a child from testing? How would they find out, no one really looks for conditions 👨🏻💻 outside of education
— Alan Kendle 📚🧩👨🏻💻 (@alan_ken) April 25, 2019
Alan did not see any of his conditions as a disability, and while he recognized the barriers, he felt there were ways to deal with them to better understand himself. And if he better understood how these conditions affected him, he could help others in the community better understand themselves.
“Alan was a life-saver for me, as I’m sure he was for many, having discovered that I live with aphantasia and SDAM,” says Glenys McLaughlin, fellow aphantasic and community friend. “The experiences Alan shared were validating and informative, and his joyful curiosity was infectious. He was a true citizen scientist whose contributions form part of the foundations of research in this fascinating field.”
In mid-March 2020, Alan was diagnosed with metastatic pancreatic cancer, and was given weeks at best months to live. During this time, his authentic and positive self never wavered. He carried on his aphantasia work throughout his terminal cancer diagnosis, with a strong determination to finish what he started.
On April 22nd, 2020 he passed away peacefully in a local hospice, leaving behind his wife, Vanessa Kendle and two step-children, Charlotte and Jack.
If you look at the content of Alan’s life and work, you will gain a greater appreciation for his contributions to aphantasia, and the community he helped to establish.
Alan enriched so many of our lives by helping us tap into something that’s already present inside us, but hidden somehow, out of reach. He challenged us to think better, to see this alternative way of thinking not as a weakness, but as our greatest strength.
“I’ve reached a point in my life where you just accept that you are who you are and you don’t think too negatively about your situation”. – Alan Kendle
Alan, thank you for helping us develop a deeper understanding and appreciation of aphantasia. Your legacy remains, and memory will never be forgotten.
Alan’s second book, with a working title “My history is stories I tell and not memories I have; Severely Deficient Autobiographical Memory and poor working memory” is to be published at a later date. If you’d like to be among the first to get your hands on a copy email: info@BennionKearny.com.
Thank you to the community members who contributed quotes: Adam Zeman, Zoë Pounder, Robb Williams, & Glenys McLaughlin.
Special thanks to our co-writers, Alice Cann and Nelan Tagra.
Our heartfelt condolences to the Kendle family.
If you knew Alan Kendle and would like to share your reflections and fond memories, please use the comment section below.
