Stacy Ellingen

Stacy's Journal: When “Perks” Aren’t Really Perks

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By: Stacy Ellingen
Posted in: Stacy's Journal

“You’re so lucky to have a place to sit all of the time.” I’ve been told something to that effect more than once. I was told that I’m lucky because I never have to buy new shoes because I never wear out shoes since I don’t walk (which is completely false, I probably go through shoes faster than most people, but that’s beside the point). When people make statements like that, I usually just try to fake laugh it off or ignore it, but really on the inside it bugs me. While some people with disabilities find humor in this, I’m not one of those people--they’re much stronger than me and I give them kudos for being able to laugh it off. Let me be clear, I know people aren’t trying to be mean when they say things, but it irritates me that the thought even crosses their mind. Am I really lucky I have to sit all the time?  Don’t they know how lucky they are to be able to stand and walk… even if the conditions aren’t ideal?

My parents and I recently took a trip to Las Vegas. I absolutely love the city, and my parents really trying to get me out there every so often. When we booked our flight, things were looking much better with COVID. Unfortunately, things kind of went backwards lately, but we tried to be really careful. We brought my manual wheelchair because we weren’t going to take anything any chances with the airlines ruining my power chair. We’ve been to Vegas multiple times, and the one thing that struck us this time was the number of people who rented power scooters. There were noticeably more people using scooters out there. While I totally understand that there are hidden disabilities and health conditions that may require a mobility device, it was quite apparent that many people were using them as “toys.”  Multiple times, we witnessed people messing around and having races on them. We even saw couples trying to ride on each other’s lap. Yes, we did see some people who clearly needed mobility assistance, but there were a lot of people who appeared to be using them as toys. My parents got irritated because these people were taking up the elevators and clogging up the sidewalks. It irritated me because of the principle of it. I selfishly thought, “why the heck are you using one? Don’t you know how lucky you are to be able to walk?“

Another thing we noticed in Vegas was the number of people who brought their “service dog” everywhere. I’ve written about this before. I understand it’s a fine line because some people do benefit from emotional-support animals, but many people take advantage of being able to use that “excuse.”  While having some sort of a vest or identification that the animal wears would expose a person’s personal health issues, it would cut back on the number of animals being “used” as fake support animals. What irritates me is that people take advantage of many of the accommodations that are supposed to help those who really need them.

It goes the other way too—the example that comes to mind is that the lines in the Disney parks. I think the policy has changed now, but when my family went when my sister and I were kids, we were forced to go to the front of lines. While it’s a nice gesture for people with conditions that literally can’t wait in line or people who are terminally ill, we felt very awkward doing it. Why should I get special privileges? We were actually quite embarrassed.

Another example is a few years ago, my mom surprised the family by getting us four accessible tickets for a Green Bay Packer playoff game. She had only gotten them because it was a lottery for accessible tickets for that particular game. My sister and dad are the Packer fans, so I felt like she used my disability to get the tickets. Looking back, I realize it was pretty selfish of me to want to take that experience away from my dad and sister, but I was so mad at her. In the end, it ended up being a moot point because the Packers lost the game before.

There are some “perks” (as some people refer to them as) that I literally couldn’t live without. Long-term care supports are one of those. While I’d love to be able to be off all of the government benefits, that’s just physically not possible. Some people with disabilities can earn enough money to be completely independent and off the so-called system, and that’s awesome. As I unfortunately found out a few months ago, I can only physically do so much without my body flipping out. As frustrating as it is, I have to remind myself that at least I’m doing something to contribute to my needs.

I’m not fully independent in any aspect of life—I never will be. Do I wish I could be and not use any of the specialized equipment I rely on? Of course I do. However, I try my hardest to do what I can. When I see people “take advantage” of specialized equipment or say something irrational, it does affect me. I have to remind myself that they probably don’t realize what they’re doing or saying may be offensive. While I don’t see these situations changing anytime soon, educating people is important. Please take advantage of the abilities you do have. There is a magnitude of specialized technology and equipment to assist people who can’t do various things, but please understand that many people don’t have a choice whether or not to use those things!

***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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