Sometimes it feels like it’s all autism, all the time for me. Most of the time that takes the shape of advocacy work of one sort or another. Yesterday I was filmed along with NY Times Pulitzer Prize-winning journalist Amy Harmon for the PBS show America Reframed in a discussion about Turning 22 and the documentary Rachel Is. Rachel Is takes us into the 21st year in the life of intellectually challenged Rachel Glynn as she turns 22, and features her mom Jane, and her sister Charlotte (who directed the movie). The movie lays out very poignantly and honestly (sometimes cringingly so) a family’s struggle with not knowing what will happen for their developmentally disabled loved one — where she will live, what she will do with herself. The film ended happily for this family but the viewer was left with the solid weight of responsibility we have as a society to spread that kind of good luck around. Hopefully when the general PBS-viewing public sees this film they will now see Our Guys like never before. And seeing is believing.
The whole time that I sat there on that set I was straining to remember every single thing I needed to say for Our Guys. By “Our Guys” I mean autistic or developmentally disabled young adults who need support to live any kind of basically decent life. I mean guys like Nat who currently need life skills support, job coaches, jobs, housing support, educational support. All the areas of life that we typically developing adults may take for granted. I hope I got it all out. The opportunities to share stuff with the public and to get them to think beyond their own concerns are very few. I try to create such opportunities with my writing. I am always hoping that someone who doesn’t know, or who doesn’t get it, will hear me or read me and a light will go on. And that light takes us all a little bit more out of the darkness — be it in the form of funding, program creation, employing someone with ID (Intellectual Disability) or ASD, (Autism Spectrum Disorder) or just plain trying to connect personally with Our Guys. Or maybe the next time they hear someone disparage public support for Our Guys, they’ll try to educate that person.
Today my work came in a different form but was basically the same. There was a gathering at Brandeis University of parent advocates and a few state representatives from Massachusetts, as well as a representative from the Executive Office of Health and Human Services (which controls our Department of Developmental Services, DDS). There was a very lively and fruitful dialog for 2 hours about policy and practice in terms of adults with ID or ASD. Again, I was sitting up straight, focusing all of my brainpower on what was being said, looking for opportunities to interject, to push the conversation towards creating a system that Our Guys can navigate. The pieces I contribute are usually around vision, of looking at what is and asking why or why not? I’m not as good at speaking to the nuts and bolts programs we already have, but I’m getting better at the alphabet soup and jargon out there.
I think I have figured out that my strength is in taking a problem and casting it in terms that most people can not only grasp but connect with. I like to illustrate the problems honestly, but to also find the hope that you can find underneath if you rub away at the tarnish of heavy bureacracy and close-mindedness. People need to hear what’s bad about what’s going on, but they also need to see what is good and what can be better. A different perspective is hard for us to grasp — at first — but once we have been spun around to see, sometimes it is the only thing we can see. Welcome to my life.