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.
