Finding a Positive

(Local View from 4'2, Lake County Press, July 17, 2025)

As we continue to roll through Disability Pride Month 2025, I am constantly reminded of the positive things my disability brings me everyday. Don’t get me wrong, there are plenty of negative or hard things in this reality of a wheeled life from pain to frustration to dealing with others’ ignorances and hurtful choices as well as all the medical stuff including brain fog and living in a body that betrays you each day. However, my wheels provide me freedom and movement towards a more thriving life than just surviving life. These wheels also give me new perspectives and opportunities to learn more about others, the world around me, and even about myself every day. I am so glad that I get to learn, and many times, relearn lessons.

Recently I was at an event to celebrate Disability Pride Month. My first ever event like this. Thanks to a trusted friend we were able to navigate parking issues, inaccessible sidewalks, curb cuts, and roadways to get to the event center. We were thankful to be greeted by someone who seemed to be in charge and they could see many access issues as we traversed the space. Another leader met us and gave us instructions on where to go and who to see, but when we met with them we also met their frustrations and lack of communication or hospitality. As the event began to get rolling about a half hour late, a great example of Crip Time, I was starting to feel like I was in my community.

The main tent of this outdoor event was down a set of cement stairs or down a pretty steep grassy hill, even power chair users were maxing out their power to get back up this hill and people using walkers had to have help going down so they didn’t fall. It was a very hot day and the only shade from the hot, full sun was about a four foot area on the sidewalk far removed from where the speakers would address the crowd. I felt like a wallflower and I felt trapped and unseen.

As a former music educator and current robotics coach and non-profit leader, I know event planning can be rough with all of the details and demands of logistics. I also understand that the first time doing anything is an experiment and has a huge learning curve. So my friend and I took this beautiful day and a less than accessible opportunity to discuss our work ahead and the intentions in our planning. Many times we are the experts in our own life but when our lives have to intersect others through communication or creating space to meet other people’s needs, that’s where there can be a rub. And this is where we need to involve others in the pre-planning, planning and execution of the event. In my experience you always need more help than you think and training more help always takes more time. Volunteers and time are usually what we are all lacking.

So what is the point of this and why did I share this story? Because I had to learn again that our intentions matter. The diverse voices and stories of lived experience matter. We can never fully show up for others if we have not invited them along the way. “Nothing for us, without us.” Even disabled folks get it wrong when working with and providing for other disabled folks. And yet, we keep pushing forward to do the next right thing at the next right time.

So what are your next steps as we celebrate Disability Pride Month? Maybe it is reading a memoir of a disability advocate, I highly recommend reading Being Heumann or watching Crip Camp. These are great stories from the amazing life of Judith Heumann and give you the deep history of our country and world in relation to the fight for disability rights. If podcasts are more your thing, I highly recommend Pushing Forward With Alycia Anderson who interviews current day disability advocates, disabled athletes and more! Or The Inclusive Dad, from Austin, MN who hosts guests that share their stories and advice on navigating the school systems, IEPs, and other caregiver topics. Or the Accessibility Advantage by Maxwell Ivey, also known as The Blind Blogger, who talks about the business world and the impacts accessibility truly has on the bottom line. There are many, many more resources and opportunities. When you find something you like or that has inspired some new ways of life for you, please reach out and share your story with me.