Stacy Ellingen

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Stacy’s Journal: An Unique Experience

By Stacy Ellingen, 2015-11-16

Growing up, I rarely thought of myself as having a disability.  Much in thanks to my parents, I was treated as normal as possible.  Obviously, my disability was (and still is) evident in many facets of my life, but I grew up learning not to dwell on it.   I couldn’t use it as an excuse.  Sure, things like regular therapy sessions, wheelchair appointments, school IEP meetings, and occasional telethon appearances were part of our routine, but that was just the way life was for us.  My family never sent me to respite care for weekends.  I never went to any camps for people with disabilities.  I certainly could have done those things; instead, my family chose to include me in vacations, outings, etc…

When I was really young, I received Birth to Three services, and I was in Early Childhood classes. From Kindergarten on, though, I was in all regular education classes.  With the exception of pull-out therapy sessions and a couple modified gym classes, I was in classes with my peers.  I had accommodations as needed, but I had the same expectations as everyone else.  Classmates came to see passed my limitations and treated me just like other kids.  At UW-Whitewater, it was a really different environment because so many students had disabilities, but, yet, the majority of students didn’t have disabilities.  I’m not sure how to explain it, but I felt just like “one of the students” there as well.  In other words, I didn’t feel singled out most of the time.

It wasn’t until after I graduated from college that I really felt the true impact of my disability.  I guess one could say the “real world” hit me hard.  Everything from finding an apartment, to finding cares, to finding employment, my limitations seemed to get in my way.  As always, though, with help and encouragement from my friends and family, I persevered and fought until I reached my goals.  That’s still true today.  Giving up isn’t an option in my world because I have set pretty normal expectations for myself regardless of my disability.   

When I found out InControl Wisconsin was going to be an exhibitor at this year’s Self-Determination Conference, I was so excited!  My mom made arrangements to take off work so she could go with me as my caretaker.  We were there Monday through Wednesday.  I had been to the State Transition Conference as a presenter a few times before, but this was my first time going to the Self-Determination Conference.  I was very impressed with all the different activities and sessions they had.  For me, personally, the section about the ABLE (Achieving a Better Life Experience) Act was particularly interesting. Once the regulations are in place and it takes effect in Wisconsin, it will potentially change the lives of many people with disabilities.  Being able to put money aside for essential necessities without losing benefits will be so beneficial for so many people.  It was very interesting learning about it.

It was great reconnecting with many friends and meeting so many new people at the conference.  I really enjoyed meeting so many people that I’ve communicated online with.  That was awesome!  It was also amazing to see so many self-advocates come together.  I kept thinking of how impressive it was to have so many people come together to support people with disabilities.   I had a great time networking!  By the third day, though, I had to keep reminding myself I was there for my job. 

You see, I’m not used to focusing on my disability 24/7.  Even though, I work in the field now, I rarely think of myself as being a person with a disability.  It’s not that I’m ashamed of it—I’m totally not—I just don’t normally draw attention to it.   Obviously, since the conference was all about people with disabilities, I couldn’t help but focus on how my disability affects my life.  It wasn’t a bad thing.  In fact, I learned a lot of valuable information and got some helpful ideas that I hope to use in my personal life.  It was just that I had never experienced three full days where I mainly focused on my disability before. 

Yes, I was there for work, but, at something like that, you can’t help but think of your personal life.  By the last day, I pretty much had had enough.  Though, the conference was great and it was terrific networking with so many people, I was tired of focusing on my disability.  On the way home, my mom and I had great conversation about this.  I told her that I felt like I wasn’t a great advocate because I don’t like focusing on my disability all of the time.  She reminded me that I am a good advocate because I continue to fight to make my life as normal as possible. She explained that the main reason I felt like that is because our family never has focused on my limitations, and she’s right.

It was certainly an interesting few days.  I am really grateful I got to go to the conference.  It was a great opportunity for me to network with lots of people and share information about the Networks.  While, sometimes, it’s helpful to attend a conference about a topic to gather information and network with others, I’m thankful that my life doesn’t revolve around my disability. I love working for an advocacy organization and being part of various advocacy efforts, but I have other interests as well.

Do I still consider myself a strong advocate for people with disabilities?  Absolutely.  Are there others who advocate better than me?  Of course, there are many!  We each do what we can, and together we make things happen for people with disabilities!

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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