Stacy's Journal: Somewhere In Between
Ever find yourself wondering which side you’re on? Whether it’s a game where your two favorite teams, deciding between two colors of paint for a home remodel project, determining which political candidate is best, or something as simple as deciding between your two favorite foods, everybody has had to make decisions that they’re uncertain of. Often, there isn’t a right or wrong decision; but what we decide usually has a (positive or negative) impact. When we are trying to decide on something, we sometimes have that feeling of uncertainty. Should I be doing this? Is this right for me? What if I chose something different? That feeling of uncertainty is something we all face on a daily basis and it’s not a bad thing. Often times, we feel “on the fence” about the decisions we make which sometimes makes us questions things. When we are “on the fence” about something, we don’t know how to feel about whatever it is.
In past entries, I’ve explained how unless I’m in situations that presents itself, I normally don’t think of myself of having a disability. No, I’m not ashamed of it; it’s just not something I focus on. It wasn’t really until after college that I learned the world of disability advocacy existed to the extent it does. My first job of being an online mentor for students with disabilities really led me into the advocacy world. Especially after college, I quickly learned that it was something I wanted to get involved in. Advocating has opened many doors for me and I’ve found my purpose. I truly love it!
Having said that, though, I often still find myself struggling to find a happy medium. I feel like I’m somewhere in between most of the time. I have many friends with disabilities. It’s interesting to me that most are either completely involved in disability advocacy or they aren’t at all. I know very few who are in between like myself.
The past month or so has been a great example of this conundrum. I was gone three weekends in a row in late July and early August. I had multiple events going on each weekend and my parents arranged their schedule to accommodate me. The first weekend I met three of my friends from college for lunch and shopping in Milwaukee. It’s something that I look forward to every year because it’s the only time we all get together. One of my friends now lives in a different country and she and her family only come back once a year. We always make sure we get together when she’s home. These three girls were caregivers for me at UW-Whitewater and the four of us became really close friends.
The second weekend was when I really felt mixed emotions. I told my mom I felt like it was a weekend of two extremes. Saturday, my mom and I were at Disability Pride Fest in Madison literally all day long. I’m part of a group that’s creating to YouTube channel about people with disabilities and we taped some videos at the festival. It was a long day, but I had a blast. Again, I guess I’m used to sticking out, so when I’m around people with all types of different abilities, it’s a unique feeling. I loved blending in with the crowd and not being stared at or judged If my muscles spasmed or if my tongue accidentally stuck out. There are very few places where I don’t stick out. As I’ve explained in other entries, since my disability is very apparent, when I’m at something like that, I automatically feel the need to prove my intelligence. Please understand that by saying that, I’m in no way trying to belittle people who have intellectual disabilities; it’s just that when you’re nonverbal and use a wheelchair, people unfortunately make assumptions. The more events I attend, the more comfortable I get. I truly love being an active member of the disability community.
Sunday of that weekend I attended a gender reveal party for one of my best friends from grade school. When I got the Facebook invite, I had to take a second to just breathe. I knew I had to attend because love my friend and wouldn’t miss it for the world, but I also knew it’d be selfishly emotional for me. As happy as I am for my friend, I just want those exciting life moments for myself. Knowing I’ll never likely experience those life-changing moments can be a hard pill to swallow. However, I knew I couldn’t let it stop me from going and supporting my friends. Mom and I went and it was a great time. Their family and friends know me and are very accepting. I caught up with another friend and her family too which was very nice. When they did the reveal, I had to take a couple seconds to compose myself, but then I was fine. I’m so happy for her and her family, and I’m incredibly blessed to have friends who continue to go out of their way to include me in their life—it truly means the world to me!
The last weekend my parents and I drove all the way up to Superior where I had a two-day Independent Living Council meeting. The Council rotates meeting at the eight Independent Living Centers across Wisconsin. I’ve been on the Council for about two years now, and I finally feel like I understand what it’s about. I’m becoming more and more active on it.
One of the weekends, my mom and I were talking and I said, “man, I’ve taken us on quite a journey, haven’t I?” She chuckled and agreed. The events of the last month have been a whirlwind. I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can. At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world.
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.