Michelle Westmaas: 'You don't have to be anybody special'

Posted: Dec. 5, 2012 6:13 pm Updated: Dec. 19, 2012 11:15 pm

Advocating for others and community projects comes naturally to Michelle Westmaas.

The Pittsfield woman has tackled issues ranging from supporting parents of children with disabilities to building a skate park with a passion for doing "what's right" passed down the family tree.

To illustrate the point, Westmaas tells the story of her Great-Aunt Grace, who, nearing the end of her battle with cancer, wanted to leave a nursing home to return to her own home with hospice care.

"They weren't letting her leave, so she got on the phone in her room and called 911," Westmaas said. "I think I know this is genetic now. Apparently I come from a long line of not going to stand still for something that just doesn't seem right."

It's a commitment she shares with husband D.J. and their children Andrew, 21, and Aubrie, 15 -- and one she intends to keep pursuing at the local and state level.

"I think that's what I'm here for," Westmaas said.

But Westmaas credits other people involved with all her efforts.

"I haven't done anything that I've ever done all by myself. Everything that gets done or makes a difference is done in collaboration with other people," she said. "If those other people weren't there willing to give their time and effort to keep things motivated, things wouldn't happen."

Why Michelle volunteers, in her own words:

"I was always really shy and quiet in high school. My dad had passed young. He was involved in a decade-long labor dispute with the Chicago Tribune. We went to a union meeting after he died because they were still trying to settle it, and the people who passed while they were in the dispute didn't have a voice anymore. Their heirs were due whatever their benefits were. My sister remembers I stood up in front of hundreds of union people arguing I should vote for Dad, that just because he was dead he shouldn't have a vote. I guess it has kind of just always been there, but then you know when you have a kid, when it's your kid, all of that comes out."

"When I was pregnant with Aubrie, they were considering increasing the class sizes for kindergarten in Pittsfield. Andrew, my son, was entering kindergarten, and I was the mom starting the petition to keep the class sizes smaller. Even before Aubrie, I was doing that kind of stuff, but then when she was born, there was a whole new direction to take it." (Aubrie, now 15, was diagnosed at birth with CHARGE Syndrome, a recognizable genetic pattern of birth defects including hearing and vision impairment, poor speech and motor issues.)

"I remember I never liked politics or any of that kind of stuff. I didn't get the whole thing. But I remember when (now President Barack) Obama came to Pike County when he was a senator. Aubrie was 3 or 4, and he spoke in the Crossroads Center right about the time I was getting clued in to ‘OK, I have to get to know about this stuff, do some things. This is going to impact her life greatly. I need to understand it and how to make a difference.' I remember typing out a whole sheet of my concerns. He was one of the first politicians that I went to or shared concerns with. We sat in the front row. Little Aubrie ran across (the stage), and he made some comment about kids being the future."

"About that time I started working for the Family Support Network, a statewide grassroots advocacy organization educating families on the issues and how to impact policy related to their family members with disabilities. It's still in existence, but there wasn't enough funding to keep the extra staff. I still work with them, but not on a full-time basis. I still maintain my connection with them and ARC of Illinois. I was a preschool teacher here in Pittsfield, a little private school. You have an opportunity to play a lot of roles when you're in an organization that small. Through that I had connections that fed into what I was doing with ARC, saw some of the same people, went to some of the same conferences."

"It got to the point where I could not go back to work unless the work I was getting paid to do was the work I needed to do for her future. I didn't have time to go 30 to 40 hours a week or even 20 hours a week to a job that was totally separate and come home and do all the things I needed to do for her. What happens to a lot of parents of children with disabilities is they end up going into the field. It's just a natural fit. So by working in the field, I get the information I need and the connections I need to best impact her life and at the same time you're impacting other people."

"I've just been really fortunate to be involved in organizations that are leaders in the state. I've even been able to have a relationship with the directors on the state level of the programs and be at the table when they're drafting policy. That's an amazing feeling for a person who didn't even like politics to be at the table in the democratic process, situations where they're crafting a policy. Most people at the table are from metropolitan areas. I'm the one from the rural place. I can say ‘wait a minute, this is what it's going to mean for us' and then they change it. That's an amazing feeling. Or to be able to go around the state and talk to other families struggling with the same thing we're struggling with. They are working other jobs, trying to figure out their whole life and support their loved one. I'm able to support them, see the light bulb go on, the hope come back from possibilities they didn't know existed. It's just a remarkable feeling."

"Aubrie now is old enough that she goes with me to a lot of conventions. The first I took her out of school was last year to go the Illinois ARC convention. I told her you'll miss a little school, but the curriculum does not include self-advocacy for people with disabilities and it's important to you. This year as it was approaching, she saw it on my calendar and said ‘Mom, I'm going with you, right?' We spent the entire day with these amazing people doing really cool things, being part of making changes in my whole state. I'm getting paid for this. That's my job. I feel really lucky every day. The people I work with are the best people around. The work we do is important, really bringing changes to people."

"We tried having a parent support group (in Pike County) for kids with disabilities or IEPs (individualized education programs) in school several years ago, a face-to-face monthly group. It just didn't work. We have a little informal group of people. We know who each other are and call upon each other when we have issues. We just now starting using Facebook, the page is pikeiep parents. Any parent with an IEP can join. It's been a good thing. I hope that will grow."

"Andrew had been interested in skateboarding since he was a little boy. I know he had an X Games birthday party when he was 10. We went to the X Games in Philadelphia about then. There was nowhere to skate. D.J. and I talked about (a skate park) for quite a while. Other people were interested. Mayor (John) Hayden offered support. We were able to get started on it, make it happen. It seems like everything grows out of meeting the needs of your kid."

"With the skate park (which opened in November 2011 and won a Governor's Hometown Award in the parks and recreation category), it is really cool to see kids using it. Even kids who don't skate have another place that's been fixed up and designed for young people. It feels like a new great place to hang out. I've heard from several different families and kids that they're enjoying it."

"(During the process) there were times we were at a lull, when nothing really great was happening. It seemed like we had so many slow times, and trying to keep that going while we went through so many transitions at home was pretty challenging but turned out to be fine. We just patiently waited out a lull, then something new would happen. If you try to hurry it, you miss out on some good opportunities. It was a lesson in patience if nothing else."

"We had some skaters who were involved in the beginning. By the time the park was built, they had moved on away from town or were working and parents by then. That's part of the lesson. Sometimes things take a while, but it's still worth doing. Now it's there for their kids."

"What I've always hoped, especially with the skate park project, was the young people involved would see that you can make changes in your community, that there's a way to do it. You don't have to be anybody special, have any special knowledge, clout or power. One beautiful thing was living in a small town. There was so much less red tape."

"Really, like with the disability work that I do, too, it's really just hoping to empower people to look at the world and see what it is they want it to be and taking steps to make that happen and believing they really can make a difference. It's so easy to complain, but that's not really making anything happen. We live in a remarkable place where any person can start taking steps to make change, and the change-makers are not people that were anything special before they started."

"That's been the biggest thing with the skate park, talking to families and wanting people to believe things can be what they want them to be. Just be bold to take steps to do. You're usually not alone. People want the same thing you do."

"Never finding that passion would be hard. I suppose if I had been, for whatever reason, stuck in a 9 to 5 job I had to stay in, I might not have found it either. If you don't have time to explore other things, you might not get there. I'm fortunate that DJ has worked with the same place for decades, which allowed me the flexibility to move from thing to thing, explore different opportunities, do whatever I needed to do."

"My husband's job brought us here. I'm from Naperville, before Naperville was Naperville. I moved away from there 30 years ago. When we first married and the first 10 years of our marriage, we moved once a year or more. To be somewhere for 21 years or more feels strange, but feels good. As a kid, we moved suburb to suburb. We didn't have one neighborhood we grew up in. It's neat to see our kids growing up knowing this clerk at the grocery store, knowing their doctor and nurse, having friends they had since preschool."

Michelle Westmaas was interviewed by Staff Writer Deborah Gertz Husar and photographed by Photo Editor Phil Carlson.