Stacy's Journal: Out of Control
Flight delays. Car accidents. Long lines for the checkout at the grocery store. Traffic jams on a busy highway. Noisy neighbors. Delays in processing orders. Not getting responses to important emails in a timely manner. What do all these things have in common? They are things that people can’t control. Obviously, there are millions of things in life that people have no control over. In many cases, people try to intervene to make whatever it is work for them, but there are several things that we, as humans, ultimately can’t control. Depending on the circumstances, things that are out of our control can evoke a gamut of emotions. Frustration, sadness, fear, anxiousness… the list goes on and on. People have different reactions to circumstances that they can’t control. Some people get really mad and distraught; while others are more rational and can understand that it is what it is. People who have disabilities are no different. We encounter many things that are out of our control—in fact, I’d argue that we face more things that are out of our control than the average person does.
“I can’t do anything about it” is a phrase my grandma always used to say when she didn’t like something or didn’t agree with a situation that was happening. We’d chuckle because she said it quite a bit and it became a bit of a game of guessing how many times she’d say it during a family gathering. As I get older, I think back and smile because she was right—there are so many things that we can’t do anything about. As I explained in past journal entries, right from the start, a fluke accident occurred during my birth that changed the trajectory of my family’s life forever. My parents and I didn’t have any control over what happened, but that mishap will affect our lives forever. When I was diagnosed with Spastic Athetoid Cerebral Palsy and my parents learned that I’d have uncontrollable movements, nobody could control that. I deal with those movements every hour of every day.
There are many other examples of things that people with disabilities simply have no control over. The overall long-term care system is probably the most prominent example. Of course, there are many different facets to this, and yes, we have some “choice”; however, ultimately, for many people, the government really controls our lives. When it comes down to it, the government decides how much care a person receives. Sure, we advocate and sometimes are able to get some more, but we really don’t have control over it. Same goes for things like financial limits. Yes, we have a choice whether or not to receive benefits; however, the limits make it nearly impossible to gain meaningful employment and still receive the crucial services that they need to survive.
Housing waiting lists are another thing that most people have no control over. Due to some changes that took place about two years ago, the apartment complex that I live in isn’t the best. Cops and paramedics are here multiple times a week, and getting a full night’s sleep is a rarity. Again, these things are completely out of my control, but they really affect me. I’ve been on the waiting list for another subsidized apartment complex for over a year. At one point in summer, I was at the top of the list and an accessible apartment was available, but then I got bumped out due to someone else needing the apartment because of a domestic violence situation. Of course, I understand why I was bumped, but my mom called about a month ago just to make sure I was still on the list, and we learned that I’m in the middle of the list. The Housing Authority has a weird way of prioritizing people. It’s another thing that is out of my control, but, yet, it really affects me.
Something else that affects me, but is out of my control is when my fiscal employment agency doesn’t pay my workers. This has happened very frequently in the last year. Each time a time period ends, I always approve the shifts right away. For whatever reason, we have had problems with workers not getting paid on multiple occasions. This is so incredibly frustrating because workers come to me, but there’s nothing I can do except for to continue to contact the fiscal agency. Recently, I’ve taken further action to hopefully mitigate this from happening so often, but, again, ultimately, as much as I’d love to, I can’t pay my workers when the agency messes up. Luckily, the workers I have now have been very understanding and patient, but I’ve lost workers in the past due to this. It’s unbelievably frustrating when there is nothing I can do about it.
I understand that there are millions of things that we have no control over. Admittedly, when so many things that are out of my control stack up, I lose patience. Thanks to counseling and supportive family and friends, I’m slowly learning how to be ok with things I have no control over. When things come up, I try to think of my grandma saying, “I can’t do anything about it.” I should know grandmas always have the best words of wisdom!
***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.
Ugh, yes, I agree. So many more things that you have to contend with. You truly do an amazing job managing all of what you deal with in a day-to-day basis!