The Elephant in the Room

Okay, so it’s been a few days. I’ve been busy, and I finally submitted the first round screenplay to the NYC Midnight Screenwriting Challenge along with promoting my friend’s show “My Gimpy Life.” Teal and her team are interviewing five candidates this week to fulfill the position of Social Media Coordinator, hopefully. Good luck to my friend Jessica Rose who has an interview today with MGL.

       Over the last couple of days, during my hiatus from blogging, a significant issue has arisen in my life, which has inspired me to write this blog. I have had a couple of hiccups with my aide care. When these issues first occurred, I wanted to blog, but I didn’t because I would have come across as bitter and angry if I had. Now I can blog about it because I am removed from the situation. I am not upset and angry but just disappointed in my generation and their dealings with others. This blog has not only addressed disability issues, but it will handle a generational issue as well.

       We are all familiar with the phrase, “Actions speak louder than words,” but do we ever really pay attention to what that means? Although I have not held a paying job at this point in my life, I am pretty intelligent, and I understand the value of a dollar. I also have dealt with personal care workers for quite a while. And I know that this type of employment is unlike any other profession. It differs from any other profession in many ways.

One of which is expected while others are not. That outside of the unique situation that is the job of personal care can see a misunderstanding. The obvious way that aide care is different from any other profession is that there is no privacy. The most intimate functions are shared between two people. When a person has to use the bathroom, they need other people. When a person has an accident, they need other people. This, in and of itself, can both cause some incredibly funny moments. Still, it can also lead to the development of another way in which personal care is different from other forms of employment. I have been warned against it many times, but I find it impossible not to become friends with the person or persons who take care of me. When somebody is intimate with your privates or puke, you have to have goofy conversations to offset the awkwardness. Eventually, the aide usually quits, or you develop a deep bond and understanding because not everyone can relate to what you two are going through. This closeness and friendship often cause one to forget a very important element of the aide care job. It is indeed a job, and your client is often extremely dependent on you. In my case, for example, to put in a funny way, I am like a giant baby with a brain and a sense of humor.
       Many disabled people would not like this analogy, but if they were honest with themselves, they would find an accurate description of our situation. As for me, for example, I am fully dependent on others for everything. If there is a snot booger coming out of my nose and I feel it dripping down into my mouth, I have to ask others to wipe it. Some of these tasks may gross the caregiver out, but if they sign up for this job, then that is what they signed up for. Except for my awesome finger and its shitty driving skills, I can’t move. I am also physically dependent on people to get me in and out of bed. Other disabled people are in similar situations. Some caregivers have an interesting perspective on the fact that we are dependent on them. Some aides view it as doing me a “favor.” Yes, I admit that I would be screwed without help but let me give a quick English lesson. The word “favor” means doing something and not getting something in return. Hence, aide care is not a favor to any disabled person or me because aide care workers draw a paycheck!

It might be a shitty paycheck, but it’s still a paycheck. If one were in the real world and refused to do specific duties, their boss would not put up with it. However, I included, along with other disabled people, have to put up with it. Why is this, you might ask? Simply because we are so dependent on people, some give and take in aide care relationships. Still, my generation does not understand the difference between working for a friend and working in general. Yes, you are friends with your clients in most cases but don’t abuse the friendship and produce a substandard care level just because you know we have to deal with it. Or, as a former friend of mine said to me (when he was training someone on how to be a personal caregiver), “You should always take care of a person as if you’re going to be in their shoes tomorrow.”

Initially, after the last aide care bump in the road, I have to say that I was bitter and angry, and I had a poor pitiful “me” moment. However, that didn’t get me anywhere. I soon realized that this would be a part of my life, not a fun part, but a part of my life nonetheless. I also soon realized that I was angry at the situation as much as I was mad with my generation. For the most part, in my opinion, my age is so self-absorbed, and altruism is a word most do not know. They put no stock into being on time and no value into a commitment. This does not only apply when it comes to personal care purposes for entirely dependent people. I’ve found this applies to other areas of life as well.

When this occurs, it causes significant issues for several reasons. Apart from the unreliability that results from people not taking responsibility seriously, it also creates other problems. I live independently from my parents, and they live six hours away, and they freak out every time I have an aide care issue. This is understandable, but freaking out does not do anything, and it only exacerbates the problem. Many people ask me why I tell them about my issues. I tell them because I need someone to vent to before I drive my chair straight through a wall. However, telling them is both a positive and a negative thing. Telling them allows me to get out of my frustration, but it also allows them to respond with the following. “Well, you shouldn’t have to live that way!” or something similar to that.

I agree with their romantic view, but that is not my reality. I should not live that way, but I do, and for a couple of days after the latest incident, I wondered how I was going to deal with this reality of my life. During this period, I ended up getting miffed at my generation. Now one might ask, how do I connect the problems I’m having with a personal care issue into a generational commentary on the sad state of affairs today. Well, the only answer I have for that is I’ve always been an old soul. I think way too much, and I have a unique way of looking at things. This example is a perfect one. With my aide care situation, I realize something. Not all my aides were acting that way. It got me thinking since when did people not value their word or commitment?

As I’ve stated before, I feel that my generation is the most self-absorbed and selfish generation that I’ve ever met. Altruism was not a word that we learned, and we are more concerned with what other people think along with what other people are doing compared to what we should be doing. How does this relate to aide care? Simply put, some of those who are around my age do not view this as a job because they are close to me in age. They view it as being able to hang out with somebody and get paid. A key example, I’ve had aides who will “refuse to do certain tasks because I have other shifts that can do it for me.” Or they are tired or took the job because they needed time to sleep—or sometimes even money. They’ve also said that other shifts can do it for me in general. This has occurred in Edinboro, Pennsylvania, and when I was living at St. Andrew’s in North Carolina.

This is not only the dumbest philosophy that I’ve ever heard, but people often forget that one would not be able to pick and choose what they do at particular jobs in the real world. You can either do something all the way or not at all. There’s no room for someone who does their job half-assed. When you pick and choose what you desire to do in a personal care position, it can cause problems, and these are not easily fixable.

Often it is hard for the person being “refused” to say anything because they don’t want to lose the warm body, i.e., the person who’s helping them, and their support system often doesn’t understand this. Even their parents or their service coordinator say that the caregiver should not dictate the care, and in an ideal world, this is what one desires. However, if a caregiver decides to show up several hours late, nothing can be done about it. I’m not speaking about any caregivers in particular because I’ve had several that have done this.

Before I continue, a quick aside to show that I understand things from the caregiver’s perspective. When you get into private one-on-one the care, I am sure it is different than working for thirteen people or even forty people where you have a break from the individual, and you have other co-workers to vent to. I also believe that it is not right that caregivers should be at a client’s beck and call. I admit I have been guilty of this. I am not dodging my responsibility at all. I feel that a majority of disabled people (as I’ve said myself included, and earlier portions of my life) have the belief that the aide is there to serve them. This is not the case.

The aide is there to help them. That being said, I come to my next point. I also believe that anyone who does not understand the dynamics of the relationship between a caregiver and a client has no right to comment about what is going on between them regarding how well a particular aide is doing their job. Yes, I do believe that aides are often underappreciated and underpaid, and this needs to change. Like I said before, though, both parties have responsibilities to create a healthy client/aide relationship. And a note to all prospective aides, do not use this as just a stepping stone job because it is not a job one can take lightly! It is not like working at McDonald’s. If you are late, give your client the courtesy of informing them because they rely on you for everything. At this point, I’m not just talking about me. I know one person in particular who was stuck in bed for several days because she had no one. Again, back to the disappointment that I have in my generation.

My generation seems to think that everything should revolve around them. Altruism and responsibility are words of a foreign language to most individuals in my age, but the most unheard concept in my generation is a “promise” that is kept. A lot of people promise someone the world, but how many of them follow through? Not very many. Since when did our word become worthless? It is okay to tell someone, “No, I don’t think I can help.” in that situation. It is okay to tell someone how you feel. Not only is my generation skittish about being honest with their peers, but also, if their peer is in some form or another disabled, then this skittishness is magnified.

I am not expecting society to change overnight, but honesty must exist in the field of aide care. If you know you are not going to fulfill duties, you need to tell someone. Whether it is either about not being able to get there on time physically or if your client is asking you to do something that you don’t want to do, then you need to either discuss it with them or if it an essential piece of the aide care description then re-look at your job description. If you are uncomfortable with your duties, then get out of the aide care business!

A final note to my parents and any other parents of disabled people who might be reading this. The realities presented in this blog are much different than I’m sure the reality that you have envisioned for me, but they are the realities that I live with. People are not going to change overnight, but it is only through communication and action that change will occur. No one’s life is silky smooth. You guys only freak out because my current goals seem a lot larger than yours. Just because you freak out about them doesn’t mean it fixes the situation. Eventually, it might make me talk about the situation less to you. Not because I do not love you and your opinion but simply because constantly reminding of how my life should work out in a caregiving sense does not help me come up with solutions for what is occurring in my life.

In closing, I don’t know who will read this blog and what emotions it will inspire in people. I thought it needed to be written to discuss significant elephants in the room that disabled people and their caregivers often ignore.