News

Have you ever been in a situation where you think to yourself, “What am I doing here?” Maybe it’s a conference for work. Maybe you’re at a court trial supporting a friend or relative who is in trouble. Maybe you’re in a plane about ready to skydive as part of a bachelor/bachelorette party. Or maybe you’re attending an obnoxious rap concert with your significant other because it’s his/her favorite genre of music. Almost everyone has been in at least one situation where you ask yourself, “What am I doing here?” These situations can be nerve-wracking, exciting, awkward, stressful, emotional, or, more than likely, create a mixture of many different emotions. When you have obvious physical limitations, it only heightens the emotions you feel because you “stick out” for a lack of better terms.

In many past entries, I’ve written about “sticking out” at different events. I explained that in most situations, I’m OK with people noticing my differences because, well quite frankly, I have no choice in the matter. I guess I do have a choice—I could be a hermit and not go anywhere or do anything—but that’s not my personality. Of course, there are times where I wish more than anything that I could just blend in with everyone else, but, most of the time, it doesn’t even cross my mind that people notice that I am different because I have a disability. Not to sound salty, but, if people have a problem with me being at an event or partaking in an activity because I have a disability, they’re the ones who have a problem!

I believe it’s really important that the general public see people with significant disabilities out and about in the community. I recently attended a rally in Oshkosh for one of the gubernatorial candidates. It was held at the political party’s local office. I had never been to the office, and it had been many years since I had been to a political rally. I have been a part of the leadership team for a disability group backing this candidate, so I wanted to attend if I could. At first, I didn’t think I’d be able to because when you have caregivers with you all day, going to something like this gets a little dicey. I wasn’t sure of the person’s political preference who was scheduled that day and obviously, I didn’t want to make her uncomfortable by having her go with me. I had kind of given up on going because I thought it wasn’t going to work out; however, my mom and I were talking on the way to the Self-Determination Conference, and she offered to go with me. I texted the caregiver who was here that day and gave her a choice—she could either come with us or she could stay at my apartment and clean. When mom and I got to the office, we signed in and they sat us in the back (which I should have spoken up about, but didn’t). At first, we felt kind of awkward because we didn’t know anyone, and everyone seemed to know each other. Slowly, the room began to fill up and more elected officials arrived. I had to elevate my wheelchair so I could see everyone. The elected officials mingled through the crowd thanking people for coming. It was neat because some of them remembered me. I had met with some of the representatives in Madison and I had emailed with a senator who was there. Unfortunately, it was too loud in the room to use my communication app, but, with help from my mom, we were able to talk with some of the legislators and candidates. My mother snapped a few pictures. While, unfortunately, I didn’t get a picture with the gubernatorial candidate, it was important for elected officials to see me there. I was the only person with a visible significant physical disability at the rally. Did I stick out? Absolutely, but know what? Especially in this day in age, it’s so important that we, as a disability community, keep showing up. Everyone—especially elected officials—needs to continue to see that we bring value to society.

There are many other events that I’ve asked myself, “What am I doing here?” One memorable example that’ll be permanently etched in my mind forever is when I was invited to the Senior Sports Banquet in high school. Obviously, I stuck out like a sore thumb among all the great athletes in my class. I was invited because I received a sportsmanship award. While I’m highly suspicious there were a couple of coaches behind the scenes who truly made it happen, I was told that it was voted on by the students. The reason I received the award was because I was an avid football and basketball fan. Thanks to my amazing parents, I rarely missed attending a game—home or away. Even though, I couldn’t participate in high school sports, I showed up to support my classmates. That night, they took the opportunity to support me and I’m forever grateful.

Living with significant physical limitations, you learn that you do indeed stick out in many situations. Albeit, it can be very difficult to accept at times, you learn that it is okay that you are noticed due to being different. Sometimes, those differences give you unique opportunities. As hard as it may be, you realize that by being different and still showing up in your community, you’re teaching others what’s possible even when life looks a little different than the norm!

***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.

I'm excited to share something I've been working on:

wherecanigethelp.com

It's a free website that helps older adults, people with disabilities, and their families find help in Wisconsin. There are almost 900 resources, all in one place, for every one of the state's 72 counties. Pick your county, and you'll see local, state, and federal programs for things like health care, housing, transportation, benefits, legal help, and more. There are no ads and no sign-up.

I built it because finding the right help shouldn't feel like a scavenger hunt.
I'd love your feedback:

How does it look? Any suggestions for a better color scheme? Is it easy to read and use on your phone or computer?

Is anything missing that should be on there, like a group, a program, or a resource in your county?

Is there anything I haven't thought of that would make it more useful?

Leave a comment. And please share it with anyone who might need it.

The Social Security Disability Insurance (SSDI) application process and subsequent mandatory 24-month Medicare waiting period can leave many people with long-term disabilities at risk of going without health coverage, with over 1 in 4 relying on Medicaid expansion in the interim. However, upcoming federal work requirements for Medicaid expansion enrollees threaten this safety net starting in January 2027. Because SSDI applicants and individuals waiting for Medicare are generally unable to work due to their disabilities, they will likely need to rely on medical frailty exemptions to maintain coverage. Although federal guidance provides frameworks for states to verify medical frailty using claims data, strict documentation and verification rules could still create significant administrative hurdles, putting vulnerable individuals at risk of losing their health insurance..

Read more