The interaction took place several years ago and probably lasted less than a full minute, but it left an impression on me so intense that it is never far from my thoughts these days.
A former caregiver and I took a trip on a Saturday to a town about 45 minutes away from where I live. Her boyfriend came along just for kicks. Towards the end of the day, I remember thinking how much fun it had been to spend a few hours away from my typical routine and relax a bit. I’m not sure if I remember exactly what we did but I believe it involved a mall and a movie. We decided to stop for a bite to eat before heading home.
When we entered the restaurant, this caregiver and her boyfriend were behind me. As we approached the hostess in order to be seated, she looked over my head to my caregiver and said: “Do you need a children’s menu for her?”
It really happened. I swear.
After giving myself a few seconds to absorb the shock, I looked the young woman directly in the eyes and responded, “No, I’m pretty hungry, your typical menu will be just fine. Thanks.”
I know she did not have bad intentions, but I was shocked at the assumption she made. My disability affects my balance and coordination. That is the only reason I use a wheelchair. And my circumstances don’t mean I’m a kid.
Many years ago as a college student, I flew numerous times to visit my parents while I had a break from school. On one such occasion, because of weather and mechanical difficulties I had endured a long day of delays and missed flights. Because I am always the first one on a plane and the last one off, by the time I got to my final destination, exhaustion was in my bones and I was in no mood for small talk.
By the time my wheelchair got to me, the crew was the only people left from the flight.
The pilot graciously offered to push my wheelchair from the gate where we were to the baggage claim so that I could meet my family there. On the way, he tried to make conversation but seemed to miss that I was a 20 something adult.
He said, very loud and slow, “Do you like to fly on BIG planes?” It really happened. I swear.
I didn’t doubt his intentions in that scenario either. I know he was trying to be friendly.
The stress and frustration of the day had caught up with me. My response?
“Only when they are not flown by ridiculous pilots.”
It was seriously time for me to be done for the day…
I have a disability. I’m not a kid.
A couple of months ago, I got word that Kansas had changed one of their Medicaid rules. See more about that here. For a few years now, a background check was required for every caregiver I hire. That is understandable. The state of Kansas wants to make sure that nobody going into the homes of vulnerable adults is going to cause them harm. I get it. These days it is further required that the background check come back before any caregiver I hire can start working. That would be a fine policy if the process took a couple of days. I have been told it can take up to three weeks. Because I mostly hire college students as caregivers (I can give you about 37 reasons why that population is the most effective to meet my needs) this policy is a problem for me. It might be difficult to convince college students to wait around for background check clearance when they have the option of working at McDonald’s and getting paid much more quickly.
When I talked to the women in charge of the program, I was told this new rule was “for my protection.” They didn’t seem to understand that if I have to get in and out of the shower on my own because I am shorthanded on caregivers, there is a very real chance that I could fall and break a hip. Therefore, giving me immediate access to the caregivers I hire is also for my protection. This new policy would make a whole lot more sense to me if the background checks were optional.
I have come to terms with the reality that I am a vulnerable adult. That means some people are going to make unfair assumptions about me. I also know that I worked very hard to get my Master’s degree and I am a published author.
My first book will be out in the Fall.
I don’t kid myself.