Yesterday was "Disability Matters Day" at the Minnesota state capital in St. Paul, and I thought I'd see what it was all about. I registered through ARC Twin Cities, and Mark took the day off work to wrangle the kids. I was very excited to to get all polished up and go spend my day with people who polished themselves up. I got a new pair of cute, but completely sensible shoes for the occasion.
Then the night before, I started to feel a little weird about going by myself. Which is odd in itself because I go places by myself all the time. But this was really going to be a "fish out of water" experience. I hadn't been to the capital since 6th grade.
So I drove up to the capital in the morning, and after a little scrambling to find quarters to pay for a parking meter, I grabbed my bag, including my Kindle in case there was some down time, and headed up the capital steps.
Outside the marble rotunda, everywhere there were people in wheelchairs and with crutches and canes. People who were obviously mentally handicapped, following other people around. Many, many people with Down's Syndrome. I thought about what my boys would be like there. I thought about the screaming, whining, biting my hand, and trying to bolt for the door. I pictured the Cookie Crisp and Froot Loops all over the capital rotunda floor. I figured it wasn't likely were many autistic kids there.
The first legislative briefing was already underway, but they were going to be repeating it in a half hour, so I figured I'd wait till then to go in and find myself a seat. As I stood there right outside the rotunda trying to decide what to do while I waited, suddenly behind me I heard a very familiar, sweet little voice singing:
"Come on, vamonos! Everybody, let's go! Come on let's get to it. I know that we can do it!"
I turned around and there was a little boy sitting on a bench with his mom, watching Dora the Explorer on a Smartphone, or something.
"Where do we need to go? Bridge..........jungle...........pyramid!"
I think I even know what episode they were watching. Yes, that little Dora, she follows me wherever I go.
And I thought, maybe there is one autistic kid here today.
So I went to the legislative briefing, and the rally after that. I clapped when everyone else clapped, held up a sign that said "INDEPENDENCE COSTS LESS" that someone handed me when I registered, and cheered and whooped when everyone else did.
ARC had emailed a template for writing up a "family story" to give to your legislator, to briefly summarize your family's disability situation. So even though I didn't meet with her, I did leave a copy of "The Korman Family Story," complete with an adorable photo of the boys, at Pam Mhyra's office. A couple of the workers at the registration desk wanted copies too, so I felt good that I got some word out about our family.
But I'm still not feeling it -- whatever it is that drives people to be political. To shout at rallys and sign petitions and promote their agendas. Maybe I'm lucky. Maybe I don't feel it because I've never had to fight for my rights. But I think I'll go to these things occasionally to make sure things stay in my favor.
Or maybe next year, I'll have Mark attend Disability Matters Day. He's always had a bit of a political bug in him...
6 Heartfelt Commentary:
I've lost my taste for politics over the years, it's too mean and confrontational...that said I'm going to Advocacy Day in DC in March to support fragile x research and funding :-)
It is so, SO important to put a real face (especially when those faces are as adorable as our kids, lol) to the bills and the $$'s that get all the attention. Good for you for going!
Glad you went for the experience and the cause. You should go to Advocacy Day if you already haven't. I can't go this year but when I went two years ago it was an amazing experience--I am not political either but being with all those parents at the nations capitol was inspiring and invigorating!
I admire you for doing what you did and imagine I'd feel much the same way. For what it's worth, that first photo is just beautiful.
Good job. Everyone who showed up really need a pat on the back.
I'm glad you had an ok experience. I went to a hearing on autism at the state capitol 2 years ago. I met some good people there, but frankly, I left very depressed. There were so many sad and desperate situations. Many parents testified to the committee. Some higher functioning kids and adults testified personally, which was also depressing -- especially when a 9 or 10 year old boy spoke about how hard it was not having any friends, switching schools, etc.
I'm impressed that you got out there....braved the cold and all, to attend the event!
I have my political leanings, but definitely am not the type to stand outside and protest or anything. But, like you mentioned...I never had to advocate for myself either.
One never knows....maybe I'll be following your example someday!
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