When I chose the theme of “advocating as a nonspeaking autistic,” Ben Crimm was the first friend I thought of to contact for an interview. Ben and I are part of the Spellers & Allies Advocacy Network, for which Ben is a true leader! He is a master of strategy and is so determined and focused in his work, while being ever open, kind, and funny. In 2021, he was recognized as an I-ASC Spellebrity Influencer, nicknamed “the Determined.” He is also an active advocate in the Philadelphia area through SEEN (Spellers Empowering Education for Nonspeakers). Like me, he gained communication access after decades of silence – 25 years in his case. He is also a great friend!
We want to thank Ben for his time and energy, as well as his CRP and father Allan! In this interview, we did commit a bit of a faux pas by neglecting to send questions ahead of time – this is generally good etiquette, especially for people who spell or type to communicate so they can write out responses beforehand, but we have been so scattered this spring. Thank you extra for your patience with us on this, Ben and Allan!
D: Hi Crimms!
B: Hi Danny and Tara!
D: Well, I am so sorry we forgot to send questions ahead of time. I am so tired, but I am so happy to see you now!
B: No problem. So happy to see you!
D: Thank you both for your time and energy, and I am wanting to start by saying how much I admire you, Ben.
B: I admire all your energy and your terrific writing
D: Thank you, Friend! So I wanted to ask about your advocacy work, specifically what your motivations are and what your priorities are?
B: I am motivated to make the world a better place for nonspeakers than it was for the first 25 years of my life. I feel there became so much misunderstanding about nonspeakers that I needed to work on destroying preconceived notions of most people, starting with my family and friends and moving on from there
D: I totally relate to that! How did you approach your advocacy in the beginning?
B: I started to gather a team and then I started to think about strategy. So it has been an evolution. So far I have a great team in the Philly area.
D: I am so impressed by the Philly cohort, and also so not surprised that you developed a strategy, because you are the strategy mastermind for Spellers & Allies!
B: Thanks for your kind words. We are giving a presentation to about 150 people on Saturday.
D: Wow, you are so making change! I am wondering if you can share any challenges you face in this work.
B: It’s really hard to spell live in front of a lot of people!
D: I never have done it, but I can imagine!
B: I find that self-regulation is the hardest thing. I feel that the other stuff is like a fun puzzle. It is easy to recognize the audience and to figure out what will engage them and create impetus for change. I am frustrated that people seem to spend so much time and energy addressing those who are against us rather than working on building a stronger coalition of allies
D: I see. Do you mean those skeptics of S2C (Spelling to Communicate)?
B: Yes. They are not our enemy. They are not who we need to pay attention to.
D: I agree that skeptics are a waste of time in many cases and it is frustrating to have to constantly defend our communication means when we have so many other important issues to deal with. How do you feel the broader autistic advocacy community includes us?
B: I think self-advocates get it; I’m not so sure that ARC and Autism Speaks and other organizations are in line. They are just not informed.
D: It is tough because their intentions are generally good, but misguided. What is your advice to those who want to support nonspeaking autistic advocates?
B: They must support I-ASC financially, and help us get more friends. We need introductions to policy makers, physician leaders, and education reform advocates.
D: I am so learning from you! I am not surprised your answer is so smart and strategic! How do you think we as nonspeaking autistic advocates handle our disagreements and why do we work so well together?
B: We are great listeners!
D: I agree, and I want to say I know you must be so busy and I truly appreciate you taking time and energy to share with us. So nice to see you both, friends! Good night!
B: Good night! Thank you!
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