not-the-sidelinesIt is a lesson I learned when I was about fourteen years old. About halfway through my freshman year in high school, I started going to the varsity basketball games. Some friends of mine were on the team and I liked to attend so that I could cheer them on. Up until that point, I didn’t have many expectations. Sitting on the sidelines while my peers participated was just par for the course. Hide and go seek isn’t really a good time when your wheelchair is bigger than everything that can conceal your presence. And kickball at recess isn’t really an option when your body doesn’t balance well. So I was used to holding coats and backpacks when other kids played.

Then one day after I had been going to the games for a while, the head basketball coach came and asked me a question. “Hey, Lorraine. I have seen you at games on a pretty regular basis. I’m wondering if you might want to help out and be our manager. You can keep track of some of our stats. Does that sound good to you?”

Was he kidding? All I wanted to know was where I needed to sign.

For the next three years, I went to every game. I got to know most of the players and their goals, keeping track of their progress in achieving them. I even got a varsity letter every year. Being basketball manager helped me out socially in many ways. But as I look back, I know it did something much more important as well. Having something to do for the team made me feel like I was I was part of it. And I found participating much more rewarding than sitting on the sidelines.

In 1994 I moved to Lawrence for my first job out of graduate school. It was at a Center for Independent Living where it was my job to help people with disabilities learn skills that they choose to increase their independence. So I would go to the grocery store with people and assist in navigating the aisles. We would sit down and practice developing a budget and strategies to stick to it. I brainstormed with some consumers about how they could find reliable and trustworthy caregivers. That last one is something I still do for myself today.

But perhaps the most important skill that I learned in my first job was how to advocate. It wasn’t until I worked at that agency that I understood that I not only really had a voice, but if I used it correctly people would listen. That didn’t mean I was always going to get what I wanted, but I also learned that what I wanted was never going to happen if I didn’t ask.

In the mid-1990’s Lawrence didn’t have an accessible public transportation system. Since I don’t drive and could greatly benefit from accessible public transportation in this town, some of my coworkers encouraged me to write a petition and leave it at the front desk of our agency for several weeks. I did so. After that, I went to a city commission meeting and told my story about what the lack of accessible public transportation in my community meant in my life. It was the first time I had given my testimony to the Lawrence City Commission. My voice shook uncontrollably and for a while there I thought I might pass out. But I did it. And I turned in the petition that had several hundred signatures on it. We didn’t get an accessible transportation system that year. It came a few years later. The people who could benefit kept talking about it. And we didn’t go away. These days I am friends with most of the city commissioners on Facebook. Talking to them has gotten easier through the years. And now they all know who I am. Go figure.

A few days ago I heard about a bill that was introduced in the Kansas Senate that had the potential to significantly impact my life in a negative way. It was terrifying. The Medicaid funding that pays my caregivers was in jeopardy of being deeply cut. Immediately I emailed the state senators who represent my community and urged them not to vote for the bill, as I explained my story. Both of them responded to me personally. That was just cool. The bill didn’t pass and I have heard from fellow advocates that things are okay for the time being, but these issues are not going to go away. At least not very easily.

So I plan to continue to use my voice to advocate for my quality of life and for those in similar situations.

Because I have found participating much more rewarding than sitting on the sidelines.