Partners in Policymaking Changed My Perspective

As a parent, I want what every parent wants - to see my children successful and happy, and I want the world to be a welcoming, healthy, and friendly place for them to live in.

As a parent of two children with Fragile X Syndrome and autism, I face some challenges in finding that kind of place in the world for them. Any parent of children with disabilities will tell you, communities are not always neighborly toward the differently-abled. Often, people with disabilities feel like square pegs trying to fit into a world full of round holes.

Many days I worry for my sons' future.

Most public places just aren't constructed and organized with people with disabilities in mind. The world caters to the able-bodied and able-minded, and that's understandable; they are the majority, after all.

At least, it seems like they are the majority. A lot of people with disabilities don't get out much. Because this world isn't really set up for them.

See the vicious circle here?

So when I heard about Partners in Policymaking, a government training program put on by the Minnesota Governor's Council on Developmental Disabilities, I was intrigued. My friend Heather had taken the course several years ago and raved about it. She said nothing she'd done before or since had had a more powerful effect on her. Over caramel lattes one morning, Heather described how her Partners class experience had taught her what she needed to know to advocate effectively for her special needs son. It had given her the tools, knowledge, and confidence to ensure that her son received the services and care he is entitled to as a citizen and as a human being.

I still wasn't sure I understood what Partners in Policymaking was all about, and wasn't sure I needed it, but I went to the website, read about it, and decided to start filling out the application. Right away, I came upon a question that stopped me in my tracks.

"How well does your community adapt to your (or your children's) needs?"

I had never thought about it like that before. I racked my brain, thinking of my boys' extreme anxiety and sensory problems. I thought of all the places we go, and places we don't go. The list of places we DON'T go is very long. DOES the community adapt to our needs? No. Should it?

Wait a minute. Why shouldn't it? Don't my sons have as much right and need to be a part of society as the next person?

"It doesn't," I answered. I didn't see how the community as a whole did much of anything to make it easier for my boys to be out and about. WE did all the adapting.

I tossed that around in my head for a couple of days. Should I expect more? Should I be trying harder to make changes?

Apparently I did need to take this course.

I finished the application, sent it in, and was pleased to be selected to participate in Partners this past fall. The class met at the Marriott in Bloomington one weekend a month, from May through September. My classmates came from all over Minnesota, and included both parents of children with a variety of special needs and people who themselves have a disability.

The very first weekend was kind of like a slap upside the head. We got an in-your-face lesson on how people with disabilities have been treated, ignored, and shockingly abused throughout history. Then we were presented with very recent news articles reporting on instances of abuse of people with disabilities right now, today. We tend to think that cruelty and ignorance and abuse and institutions are all a thing of the past, and that modern society treats people with disabilities with compassion and respect, and that laws exist to protect them.

The first weekend of Partners in Policymaking forced us to stop comforting ourselves with the belief that everything has changed and that abuse no longer occurs. People with disabilities still experience abuse and neglect and discrimination today.

The weekend classes that followed the first were a broad combination of civics, education and guidance that instilled us with confidence and assurance in supporting our kids and ourselves. I met county commissioners, state and federal senators and representatives, authors, advocates, activists, and lobbyists. We had meetings with our individual legislators. We testified in mock congressional hearings. We learned how to be informed about disability legislation and how to follow political procedures. We learned that our voices do make a difference, and that lawmakers will listen to us.

I got to know my classmates well and made great, lifelong friends. The members of our class who had disabilities, the self-advocates, were especially inspiring to me. They were people with an array of disabilities who have faced challenges I can't even imagine, and here they were - participating in this government training program to learn how to better advocate for themselves. There's no more powerful voice to advocate for people with disabilities than one with firsthand experience. They are electrifying.

I'm less afraid for my sons' futures, after meeting them.

The education I received was invaluable, but beyond that, I slowly realized the class was changing the way I think. The entire disability community has much to offer the world.  We lose out by not seeing their gifts and encouraging them to make the most of their lives.

I don't have to accept my community and the law the the way it is.  I was thinking the other day about the latest autism statistics.  1 in 88 children, and 1 in 54 boys.  That's a significant portion of the population.  I called Target's customer service, and asked them to consider carrying some products for people with autism.  I gave them suggestions of websites to find sample products I think they should carry.  I will call again in a month or so, to see if they have given it any consideration.

If you are living with a disability or raising a child with a disability, please look into taking this course. You can read more about it at their website, http://www.partnersinpolicymaking.com/. Feel free to contact me for more information as well.