From a young age, most people are given choices and are encouraged to try new things.  To begin with, parents give children very basic choices such as the choice between juice and water.  As kids get older, they began to learn consequences and benefits of their choices.  Parents often encourage them to try new things and then help them make decisions.  Making decisions is a huge part of life.  As adults, our choices often have significant (both positive and negative) repercussions.  Some choices are very easy while others are almost impossible to make.  For all people, having choice is a critical part of life; for people with disabilities, having choice and being able to self-direct often comes with many obstacles.

I’ve been out of college over 11 years now, but each August, I find myself reflecting on one of the biggest decisions I’ve ever made.  It was a decision I made 17 years ago. At the time, I had no idea of how big of a decision it was.  I just had graduated high school and was preparing it to go off to college.  Sure, I had some extra things to get ready, but I was getting ready for college just like all of my friends were.  It didn’t hit me that I was about to take a huge leap of faith and move away and be on my own.  I was just doing the “normal” thing.  Now, I realize what a life-changing decision that was. I had no idea what I was getting myself into which, looking back, was probably a really good thing.  I know my parents—especially my dad—would have rather had me start out at UW-Fond du Lac, but, nevertheless, they supported and encouraged me to try it at UW-Whitewater.  It was the best decision I’ve ever made.  Yes, I’m very proud I earned my Bachelor of Arts degree, but, beyond that and perhaps more importantly, I proved to myself and others that I could live on my own.  Like I’ve said in past entries, this was a huge relief to my parents knowing I could physically manage (with the right supports) without them. I often wonder where I’d be today if I hadn’t taken that giant step.  Where would I be? Would I be living on my own?  Would I still be living with my parents? What would I be doing?  It’s honestly a scary thought.  There’s no doubt in my mind that that one decision has shaped and will continue to shape my life forever!

Most choices obviously aren’t as monumental.  Recently, I found myself wrestling with the decision whether or not to resign from one of the state disability councils I was on.  I had been on this particular council for three years, and while I enjoyed my time on it, I never really felt a real connection to the subject matter.  The role of this council was more about funding allocations and policy for a certain type of organizations which provide services for people with disabilities rather than actually creating change that directly improves lives.  I tried my best to learn and become interested in the council, but my interest just wasn’t there.  When I was appointed, I filled someone’s spot who left in the middle of their term and then I started my own term.  Originally, when it became clear that I wasn’t passionate about this, my plan was to finish out my two-year term and just not apply for a second term.  My term would have ended next July; however, the council began updating its policies and there was talk of having terms being three years each (instead of two).  That’s when I really started questioning whether I should resign.  It was hard because I’m friends with some of the council members and I knew they’d be disappointed, but I knew it was best to resign because I wasn’t fully invested in it.  I knew it wasn’t right to take up a spot on the council when I had these feelings, so ultimately, I decided to resign.  Those weren’t pleasant emails to send, but I feel it was the right decision.

Care is another area where having choice is crucial for many people with disabilities. When you rely on caregivers to help you live life, you have to have some choice about who comes into your home and when.  Although it’s often denied, some long-term-care programs don’t allow for much choice.  Some people with disabilities need assistance in  making decisions about finance and care; while others are capable of self-directing everything.  As you know from reading my past entries, I’m a participant of the IRIS Program which allows me to self-direct every aspect of my life.  Not only do I have choice of how to spend my budget, but I also can choose who works for me.  That’s a huge plus of being in IRIS.  When I had care agencies in the past, if I didn’t get along with a worker, I’d have to talk to management, and, unless it was an extreme safety situation, I’d have to deal with it and continue with the person.  Now, although I try my best to make things work and get along with my aides, I can choose to terminate a person if things just don’t work out.

Making decisions and having choice is part of life.  We make hundreds (or probably thousands) of choices on a daily basis.  We learn from our choices—sometime we learn the hard way by making bad choices, but that’s ok because those choices we make that shape our life into what it is.

***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.