Stacy Ellingen

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Stacy's Journal: Life-changing Moments

2019-03-02
By: Stacy Ellingen
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Have you ever been somewhere when you suddenly pause for a moment and think to yourself, “How did I get here?” Whether it’s laying in a hospital bed, walking on stage for a graduation, lining up for a play on the field of a packed football stadium, sitting in a courtroom awaiting the jury’s verdict, or in another situation, most people have experienced a moment where they have stepped back and thought about how they ended up in that situation.  Many times, those moments can feel like an epiphany to people.  Obviously, depending on the circumstances, it can be a positive or negative revolution.

I had one of those moments a few weeks ago while attending Independent Living Days in Madison.  As I mentioned in a previous entry, last year I was appointed to the Independent Living Council of Wisconsin.  The Council works together with the eight Independent Living Centers in Wisconsin to provide services and advocacy for people of all ages with all types of disabilities. The Council meets quarterly rotating visiting the Centers.  Due to transportation and care issues, I attended a couple last year via teleconference.  Fortunately, thanks to my parents, I’ve been able to attend the last three in-person.  The February meeting is usually held at the center in Madison because Independent Living Days are right after it.  After discussing it with my parents, my mom agreed to come along as my caretaker.  Being my first time attending, I wasn’t really sure exactly what Independent Living Days were.  After some emailing, I learned that it’s a two-day event- the first day is like a conference about Independent Living and the second day is meeting with legislators at the Capitol.  There was a teleconference beforehand about what messages and asks to bring to the legislators.  After the teleconference, I programmed all sorts of different things to say into my communication app.

Being a council member, I was in Madison for four nights.  Monday was our council meeting, Tuesday was an off day (the directors of the Centers had their meeting), and Wednesday and Thursday were Independent Living Days.  My sister and brother-in-law live in the Madison area, so I’ve been down there a few times, but this time my mom and I really got to explore the area which was fun. Tuesday, we walked around State Street and the Terrace which was neat.  We also were able to meet relatives for dinner a couple of the nights so that was nice.

Wednesday and Thursday were amazing.  The hotel where the conference was at Wednesday was full, so, since parking is such a mess is that area, mom and I walked from our hotel which was about a mile away.  Of course, it’s Wisconsin, so it was snowing that day which made the walk interesting.   They started the conference off by giving a brief history of Independent Living in Wisconsin.  Being relatively new to this, I found it very interesting.  The break-out sessions were more geared toward Independent Living Center staff, but it was great learning more about the services the Centers provide.  For me, it was absolutely awesome getting to network with so many people—especially people from my area.  In the evening, they had a dinner, an award ceremony, and karaoke, so it was fun to be able to socialize.

Thursday morning, we met at the Capitol bright and early.  I had only been in the Capitol one other time—the day before my sister’s wedding and we were only there for a few minutes.  I had never actually seen offices or rooms.  It was neat to see.  Each center setup visits with legislators from their area of the state.  People went in groups to each visit.  There was at least one employee from the Independent Living Center in every group and that person took the lead in back the conversation.  There were four main topics we were supposed to discuss: Healthcare, Mental Health, Transportation, and Independent Living funding.  Each category had several asks (mainly for more funding), but, as I learned, it was more important to explain to the legislators about what people with disabilities are struggling with and how more funding or supporting a certain bill or issue would help.  I was able to meet with five legislators (or a person from their staff) that morning.  During the visits, I often chimed in on the topic of healthcare sharing personal stories about the direct careworker shortage.  I feel like personal stories make most of an impact on people.  Unfortunately, the visits were only about 15 minutes each, so there wasn’t much time for each topic.  Each legislator was given a folder with information about the Independent Living Center and the topics we discussed.

After we were finished with our visits, we all met back in a huge courtroom to have lunch.  As I was conversing with some of my new friends, I had *that* moment.  How did I end up in the Capitol advocating for issues I wholeheartedly believe in?  How did I become such an advocate?  Twenty-five years ago, who would have ever thought that I’d be using my cell phone to not only converse with friends, but to speak with legislators about crucial issues people with disabilities face?   I couldn’t help but reflect on where life’s path has taken me.  Sure, there have been many curves, but, often, those curves lead me on new paths.

I can only hope we made an impact during our legislative visits that day.  For me, saying it was an eye-opening experience would be a huge understatement.  Being able to advocate on that level was truly amazing.  In recent years, I’ve become more involved in disability advocacy.  I only hope I can continue to do so—I believe it’s my purpose in life! 

***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.

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