Meet Stephenie.  Thanks to her family’s encouragement and belief in her, this self-advocate has done so many incredible things.  She believes self-determination is having a voice and a choice what happens in your life.  As she prepares to celebrate her 5^th wedding anniversary, she explains how it has fueled her advocacy towards eliminating the marriage penalties and increasing asset and wages.  She encourages people to set goals and reminds us that it’s ok to step back and break goals into manageable steps.  We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

Stephenie is a self-advocate with Cerebral Palsy (CP). She lives in the Fox Valley Area with her husband, Ben and three cats.

 For as long as she can remember, she has been advocating for things that she needed or wanted to do. She shares that it’s something her family encouraged her to do from a young age. Being one of four siblings, and the only child with a disability, she was “along for the ride.” “My parents and siblings included me in most of the daily goings-on. They have always believed that the list of things I can do is longer than the list of things I can’t,” she says. To this day, if there is something she unable to do, it usually comes down to either a moderate risk to her health/safety or lack of the suitable adaptations that make it possible for her to do it.

That said, Stephenie explains that her family’s belief in what she’s capable of and the dignity of risk gave her the freedom and confidence to seek out and embrace new experiences. From getting a college degree to moving out on her own, to international travel, dating, and getting married. She explains that she generally doesn’t let setbacks stop her. Instead, if there’s something she wants to do, she works at it until she finds a path or opportunity to do it. It hasn’t been easy. She shares that there are a lot of barriers and limitations to work around. “I get frustrated and discouraged sometimes, so I take breaks to work through that and recharge. Then, I try again. It takes time and perseverance, but 9 times out of 10 it’s worth it,” she says. As she has gotten older, she really wants to help other people with disabilities discover what they are capable of and pursue their goals and dreams. That desire led her to Disability Rights Advocacy and seeking change not just for herself but change within her community too.   

What does Self-Determination mean to you? Why is it important? 

For Stephenie, self-determination is having a voice and a choice in what happens in your life. She believes that for it to be successful, accommodations and adaptations may be needed, because the playing field isn’t level. But in the end, what you say goes and your choice is supported. It is important because it allows all of us to experience a life more fully lived. “We all have goals, dreams, and wish lists. Everyone’s wants something different out of life. Self-determination allows you to embrace life and make it your own,” she explains.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Some exciting news for Stephenie is that she and her husband will celebrate their 5^th wedding anniversary this year. She shares that while the road to marriage wasn’t easy, and isn’t for most people with disabilities, she’s excited to celebrate this milestone. It has fueled her work to eliminate the marriage penalties and increase asset and wage limits. She explains that there’s a way to go yet before the penalties are eliminated, but there is legislation in the pipeline to increase the asset limits and make other reforms to SSI that are sorely needed. “I’m hopeful that we’ll see the bill passed and those changes start to happen. We all deserve to experience love without limits if we choose to,” she says.

What tip or resource would you like to share with people who want to be more self-determined?

Stephenie’s self-determination tip is to set goals. “With self-determination, ideally the floor is yours. The world is your oyster. The question is, now what? What is it that you want to do?,” she tells us.  She explains that answering that question may feel overwhelming. Stepping back and setting goals can help break things down into manageable steps. It can also help you set a target to aim for. It usually doesn’t happen right away, but when you hit that first target, it not only gives you a sense of pride and accomplishment, but it also motivates you to set the next goal. As your goals build on each other, your confidence will grow. You may find yourself more solution-minded, open to new experiences, and excited to see what’s around the next corner. Goal setting has been really positive for her, she hopes it is for others too. Just remember, to set reasonable timelines for whatever you want to accomplish. And keep an eye on your energy and stress level. Take breaks for your mental, emotional, and physical health when you need to. The goal will still be there to work toward after you recharge.

What are some of your hobbies?

In her free time Stephenie enjoys writing, painting, and making jewelry. When she’s not doing that, you’ll probably find her cuddled up by the fire with a good book or taking a bath to relax. She also loves spending time with animals and traveling with her husband to see new/favorite places and have adventures together. She likes to cook and decorate; take opportunities to spend time with friends and family. In warmer weather, she’s either in the pool or in the garden.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.