Damon Kirsebom – A True Influencer
SPELLTEMBER continues, as we recognize and spellebrate the hardest working people we know, nonspeaking people who spell and type! A spellebration of all of the nominees and their Spellebrity Trading Cards can be found here, however today I have the pleasure of introducing you to one of our All-Star Influencer Spellebrities, Damon Kirsebom. Some questions were answered before our live interview, where I had the pleasure of interviewing Damon, who spelled with his mom and CRP, Seanon. Described as being “beautiful, artistic and kind; with a great urgency to help others,” Damon is a TRUE influencer, and I am thrilled to have been able to meet and talk with him.
What are the top three ways that spelling has affected your life?
I studied Maslow’s Hierarchy of Needs last year, and it struck me that before I learned to spell my thoughts, I could not express how to access some of my most basic needs. I understood, for example, when I was thirsty, or too hot, but couldn’t reliably share this information. Although people tried to anticipate my needs, they let their understanding of their own bodies guide them, and thus, often missed the mark. This created dysregulation in my body, and greatly increased my overall anxiety. These days, through spelling, I no longer struggle to access my basic physiological needs.
Thinking about my higher needs through Maslow’s framework, I realized that not having access to reliable communication had limited my ability to seek reassurance, and avoid stressful situations. For example, I hum quietly, or flick my shoulders in order to cope with noises in the environment. This enables me to release anxiety. Before I could communicate this, people at school often prevented me from using such strategies, then blamed me when I would engage in noisy, anxious, repetitive chatter. My anxious reactions were misunderstood as intentional behaviour, and I dreaded situations in which I did not feel secure. When I learned to spell out my thoughts, I was able to provide suggestions as to how I could successfully navigate stressful environments. Once people understood my reactions, they allowed me to use my coping strategies, and provided the reassurance I required.
These basic needs are the foundation of Maslow’s Hierarchy, and because I can spell my thoughts, I can meet these physiological and safety requirements. Further, my spelling has meant that I can climb Maslow’s pyramid!
With respect to psychological needs, I love being known. Because I can type on my iPad, I am able to ask questions, make jokes, share my ideas, and build beautiful relationships. I never miss an opportunity to give genuine compliments, or to tell people I love them.
Similarly, I am able to pursue my dreams. Before I could spell out my thoughts, I couldn’t tell people that I wanted to paint a portrait, and play hockey, for example. Honestly, nobody would ever have guessed these dreams by my outward “behaviour”. As of today, however, I have painted an enormous self-portrait, I play hockey, and I am about to graduate from high school with honours—all because I could communicate my wishes.
When people see me, they might automatically think I am deficient; however, when people come to know me, they understand that I am a deep-thinking, accomplished human being with limitless potential. I expect I will achieve Maslow’s highest level of “Self-Actualization”; and I am so grateful!
Kelly: Damon, I love that you said you never miss an opportunity to tell someone you love them! I am the same way, and I love that about you!
Opportunities. It took so long that I really cherish the opportunities .
What’s something you want someone to know about you?
I am a soft hearted guy but with an enormous inner strength.
You have been identified as an inspiration to the spellerverse. Describe a scene from our future world in which nonspeakers are fully recognized and included. (Pretend we are following you around with a video camera, what would we see you doing, who would we see you speaking to, what supports would be normal and everywhere).
I am a sought-after expert on achieving equitable education access for non-speaking students. I am excited to be “speaking” at an education conference today! My taxi driver is a familiar, trained communication partner, and is unphased by my curious movements and anxious humming. He calmly presents a letterboard when I get into the taxi, and I tell him where we’re heading. When we arrive at the venue, the driver walks me into the building, to my usual support person. The rooms are quiet, and the lights are glowing in a way that is pleasing to my senses. The presentation features students and professors who use alternative modes of communication, such as letterboards, iPads and computers. They are received as experts in their own communication methods. There are trained communication partners available for anyone who requests such support; and their presence is welcomed by all in attendance. The Prime Minister of Canada is seated at the head table with the panel of experts, and he is my communication partner today. In fact, I have met with him on numerous occasions to discuss communication access, and we have become fast friends. I have educated his staff, and he is excited about the future of non-speaking students in Canada’s education system.
The presentation is an enormous success, and the crowd cheers quietly. On Monday, the Prime Minister will be tabling a bill which is the first step in making the right to communication choice a law in our country. I cannot wait!
What superpower would you choose to have and why?
I would like the superpower of persuasion because I find that people need convincing about spellers like me and the reality is we must constantly prove.
If your life was a book, what would the title be?
Off the Rails and Back on Again
There’s a lot going on in the world right now! What is bringing you life and joy these days? Tell us about it!
I’m the first to admit that these difficult times have added extra layers of stress for me. I worry about others. In order to cope, I have been reading with my brother, and learning to play pickle ball.
Damon, thank you so much for the interview! It was a pleasure to chat with you, and I hope we meet in person someday in the future!
When we meet in person I will have some compliments for you . D: Thank you so much Kelly.
Congratulations from all of us at I-ASC, Damon! We have NOTHING but compliments for you!
Damon Kirsebom is an autistic advocate who types in order to communicate his thoughts. In line with the United Nations’ Universal Declaration of Human Rights, Damon is dedicated to eliminating barriers to communication and inclusion, so all people can participate fully in our society. He is a member of Spellers and Allies, and has also shared his perspective with educators, medical professionals and government representatives. You can follow him on Instagram, @damonkirsebom
The mission of I-ASC is to advance communication access for nonspeaking individuals globally through training, education, advocacy and research. I-ASC supports all forms of augmentative and alternative communication (AAC) with a focus on methods of spelling and typing. I-ASC currently offers Practitioner training in Spelling to Communicate (S2C)with the hope that other methods of AAC using spelling or typing will join our association
I am a nurse qualified in learning disability, and many of the people I’ve supported are non-speaking. How many of them have not been given their voices and empowered themselves? I always prided myself on my empathy but am now doubting myself. I have been qualified for years and am still learning but it is so difficult swimming against the tide but then, why am I telling you this? It’s voices like yours, Damon, that keeps me going upstream, against the tide or wherever I need to go, until everyone is swimming together in a beautiful formation regardless of abilities, voices heard in different ways. Thank you.
We are so glad that you found this a valuable as we do. Damon and other nonspeakers are truly the subject matter experts we all learn from!