News

The Wisconsin Board for People with Developmental Disabilities (BPDD) released legislative policy priorities that focus on upholding the rights of people with disabilities to receive care at home, get an education, and live and work in their communities.

People with disabilities fought for decades for laws that ensure that we cannot be set aside and locked away in institutions. A recent U.S. Department of Justice memo says these laws do not give people the right to live in their own homes and communities. Medicaid cuts and federal actions targeting home care funding threaten the care infrastructure Wisconsin has built to prevent people with disabilities and older adults from unnecessarily ending up in costly Medicaid-funded nursing homes and other institutional settings.

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.

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