• J.R. Reed

Partnering To Change Policy


You don’t think the disabled can do it, do you?

This past December I walked across the street grab my mail, only to see my neighbor, shirtless, pulling his gut up and burping, “Hey, J.R.,’ as he took a swig of Busch Light.


I kept trying to look away, as I yelled, “Yo, Gary.”


Luckily there were no bills in the box that day. Just a single letter with a large “MODDC” in the upper left-hand corner.


Instantly I froze, my mouth went dry and a panic attack overtook me all in the moment of a single breath.


I’m not sure how long I stood there, frozen, but once I could move again, Gary was still shirtless, though now he was in the driveway.


I hurried across the street to freak out in peace and either dance like a middle-aged Caucasian or cry like a little kid who got their favorite toy stolen.


In October I applied to the Missouri Developmental Disabilities Council for their 2019 Partners in Policymaking program. It’s an intense nine-month course meeting for sixteen hours one weekend a month.


Turns out they wanted me, so I got very excited and apparently loud because my twenty-one-year-old daughter made a rare non going to work appearance from her room and asked what my deal was. Buzz officially killed.


Fast Forward to Friday, February 1.


So, completely nervous and making sure I packed extra anxiety meds, I put my service dog, Tye, in the back seat and began the two-hundred-thirteen-mile journey to Columbia, MO. It’s a journey I’ll make seven more times until September, with a slightly shorter trip one month to the state capitol, Jefferson City.


As I drove I thought about that old Tootsie Pop commercial where a little cartoon boy approaches a wise old owl and asks, how many licks does it take to get to the center of a Tootsie Pop.


The owl takes it and licks three times before crunching down and then proclaims, “Three.”


How many anxiety pills, I thought, does it Take J.R. to get through this first weekend?

You see, us Aspies (those with Asperger’s Syndrome, a high-functioning form of autism) do NOT like change. Routine is our jam. It’s how we roll.


I can deal with small changes but I learned this first month how the next eight need to go. My routine was altered for two days before I even left because I was working ahead on my editing, and worrying about how being in a room for sixteen hours with forty people I didn’t know would go.


I was/am making some big decisions on a novel that will be published this summer plus recording and editing the first three episodes of the Not Weird Just Autistic podcast, coming soon to your favorite podcast service, plus trying to sleep and accomplish four days worth of work into two. No sweat.


We arrived in Columbia at the appointed time and I let Tye do his thing while I grabbed my stuff, and then we headed inside, dropped our stuff on the bed and made it to the room we would be in.


I grabbed the closest seat to the door so it would give Tye more room and would give me a quiet-ish exit, should I feel like I needed to escape. Luckily that never happened.


Before the program leader picked up her mic to speak I took a look around the room. We were so different that it looked like we were sitting the for jury duty as if we had been called at random to appear.


Folks in wheelchairs sat next to soccer moms and dads of kids with disabilities who sat next to those with speech impediments who sat next to those with hidden disabilities. Or were those all really soccer moms and dads?


Who cares?


Yet we were all there for the same reason. To learn how to be better self-advocates, and advocates for the disabled community at large. Giving ourselves a voice instead of letting others do it for us.


We’re a motley crew, not to be confused with Motley Cru, but even after just one weekend, I would bet on us in a dust-up with some politicians trying to screw with our rights.


People rarely give the disabled community the credit we deserve, but in the words of Saturday Night Live’s Stuart Smalley, “I’m good enough. I’m smart enough. And dogonne it. People like me.”


We need more of the disabled community to step up and help effect change for the better. More of us need to stand up and show who we really are and that we have usable skills, even though some may not have usable limbs. The two things don’t equate.


Look at the work of Stephen Hawking and tell me I’m wrong.


In conclusion, I have a message to all politicians who think we’re throwaways.


We’re not. We’ll prove it to you. You’ll treat us like the equals that we are. Eventually.


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