It was an emotional week. The worst of times and the best of times, as Dickens might say.
I watched two webinars sponsored by the Drexel University Department of Education that featured multiple presenters who doubt my method of communication – Spelling to Communicate. It was titled “The Resurgence and Rebranding of Facilitated Communication and Why You Should Care”. I heard the same tired arguments I have heard before:
- Improper influence by trained Communication Regulation Partners makes authentic communication by nonspeakers impossible
- Autistics can point so they do not need coaching
- Motor difficulties are not the reason that nonspeakers cannot use their voices
These people have a totally different understanding of reality than the experience my fellow nonspeakers, and I live with every day. I know we will not change the opinion of these people who have built their careers protecting other nonspeakers from terrible, harmful people like me.
Now for the best of times! Just imagine what it felt like for me to participate as an invited member of a group convened by The Center for Autism Research at the Children’s Hospital of Philadelphia. The group is tasked with the responsibility of providing input on the priorities for a new program being developed to address the transition from secondary school to adulthood.
Although I was apprehensive about how I would be received by this group of self-advocates, parents, physicians, mental health professionals, program leaders, and researchers, I needn’t have worried. People welcomed me and really listened to what I had to say. My use of a clear letterboard helped establish the authenticity of my communication quickly. It felt like I belonged there.
I will work hard to inform these people who have never met a nonspeaker who communicates with a letterboard precisely what we are capable of. I will also work to make sure that access to full communication of the nonspeaker’s choice will be one of the priorities of this new program.
Given the option of working to rebut the misinformation expounded by those who doubt us or working to educate those with open minds and eyes that inform their ideas, I will always choose the latter. The former group is small and does not deserve our attention.
My name is Ben Crimm. I am 30 years old and started to communicate only very recently at age 25. I use a letterboard or QWERTY keyboard for all my communication now. At the start of the pandemic, like everyone else, I decided to reach out to some of my friends. I set up Zoom calls with other nonspeakers I knew. We started talking about our lives and soon realized that we shared so much, including the same experiences in school. We all feel that we learned nothing academically, and our intelligence was not recognized. My friends and I resolved to change this. I joined the Spellers and Allies Advocacy Network 2 years ago in order to raise awareness and bring change for nonspeakers. I work part-time as the Nonspeaking Coordinator for this group.