We Want Our Close-Up Too!

"I appreciate that I do, but I just want to go out for the right parts and not waste anyone's time." –Teal Sherer from My Gimpy Life

       As some of you know, I have a degree in Theater and have recently become an aspiring screenwriter. So I thought, is there any way to connect what I want to do to live my blog? Then I remembered the above quote from a great show, "My Gimpy Life." Those of you who haven't heard of the show or checked out my Facebook page where I promote it constantly, let me give you a brief synopsis.

       In the show, Teal is a disabled actress, and the show chronicles her life activities over five episodes. While the show does talk a lot about her trying to audition for parts, it also mentions critical disability issues such as accessibility, the able-bodied community's perception of disabilities in general, and some awkward situations people with disabilities can be placed in. Right now, the show is in production for Season 2 after Teal's Kickstarter campaign raised more than 50,000 dollars in the hopes of producing more episodes after its successful Season 1, which was presented by Dracogen and Rolling Person Productions.

       The quote about Teal wanting to go out for the right part and my love for T.V. inspired me to do a bit of research, and what I have found is upsetting. Yet, it's not surprising. I have said before that perceptions of the disability community are not all self-inflicted. In fact, for the most part, society creates them. In today's society, one wonders what avenue has the most influence? If one thinks a little bit and does their research, they will find that the media has a great deal of impact on societal trends and perceptions. To go along with this point, there is one corner of the media market that has, in my opinion, the most significant impact.

       Celebrities and Hollywood are trendsetters in society whether they intend to be or not—people often emulate their fashions, beliefs, and sad behavior. I believe this is true when it comes to perceptions of the disabled community as well. I am not saying that Hollywood or the media created perceptions of the disabled but merely that they're reinforcing them. In an excellent article titled "Depictions of disability on T.V. still leave much to be desired," the author lays out how the media influences perceptions of the disabled.

       One startling quote from the article can summarize it all.

"When depicting disability, mainstream broadcasters give us the good, but they give us the bad and the ugly – and in the case of Bodyshock or Extraordinary People, do so while calling them exactly that. The modern-day freak show, these ratings hit mix deformity, disability, and obesity into a one-size-fits-all hatchet job of ignorance." Disability is a wide-ranging term and to lump us all together in a format that has so much influence is detrimental. What also is detrimental is something that often occurs in life. The author puts it like this, "Like a lot of people in life, it's when programmers think they're helping that they can cause the most havoc."  By this statement, the author refers to the fact that often shows presented under the pretense of explaining the world of disability often end up falling into two categories: give these people sympathy or be inspired by them.

While many disabled people have inspirational stories, I believe that it is not the community's desire as a whole to be seen just as an inspiration. As I've said previously, it's our desire to be seen as normal people but with visible obstacles that we must overcome.

       Along with this issue regarding television, there is a much more pressing issue that I think needs to be addressed. As I've said, I am into Theater, and any of my friends would tell you I like to be a ham and have quite the imagination. I have several sides to my personality and honestly would enjoy acting at some point. However, I realize that if I get into the movie and television business, the available roles are limited. This is why I focus my talents on other aspects of the company. It does not bother me personally that functions are limited for disabled people right now on basic and cable television. I do not expect society to immediately create watchable disabled characters if they do not rightfully understand disabilities. However, I do have a beef with the industry that I want to get into.  

       Recently, there has been a stream of disabled characters on T.V. Most notably perhaps is the character House played by Hugh Laurie, the character Artie in the show Glee, and Walter Jr. in the show Breaking Bad played R.J. Mitte. Sadly, only one out of the three listed here are disabled. R.J. Mitte has the same disability I do, just a milder form of it. That being said, I have a question for Hollywood. Why in the world would an industry as powerful as yours miss an opportunity when you have one? Hollywood often engages in what is known as "Crip face" or "Crip casting," where they employ a non-disabled person to play a disabled person. This practice is so common that my friend was even surprised when we found out that the disabled characters were not.

       I may be being a little harsh. I mean, yes, it is significant that society is being exposed to disabilities. Still, they are being exposed to disabilities most often in negative ways. Most of the characters with disabilities on T.V. are stereotyped. This may be a drastic comparison, but I believe that it is a valid one. When people dress in blackface, which is a white person dressing up as an African American, it is frowned upon. For example, many years ago, a fraternity was suspended from activities at my school because they had a black face party. Granted, the blackface's gentlemen were black, ironic, but the idea is still the same. Since Blackface is so frowned upon, why isn't Crip face similarly frowned upon by society and the disabled community?

       As I've said earlier, there are limited roles on T.V. right now for disabled people in this blog. Another article published a list of 10 roles in which actual disabled people played disabled people. Sadly, only one show of which I would consider mainstream. There were shows on networks such as ABC Family and networks like OWN, but these networks do not get as much attention from the public. The show that did have a disabled character, who was played by a person with a disability, was the aforementioned show "Breaking Bad," which is a beautiful series. As I also said earlier, I would love to act, but this chance is rarely possible. If Hollywood continues to unintentionally or intentionally eliminate a few parts that are perfect for disabled people, this will not only create a sad loss for Hollywood but a tragic loss for society in general.

       In closing, but I will use a quote from my friend's. "There is a brain drain in this country because society does not see the person with the disability, and instead, they see the person after they see the disability." Sorry, Karen, I changed it a little bit! Disabled people have a great story to tell, and we deserve the chance to say to it in one of the most potent places to tell a story, that being Hollywood and the media in general.

l.Footnotes

1.) http://www.guardian.co.uk/tv-and-radio/tvandradioblog/2011/jul/01/born-to-be-different

2.) http://whereslulu.com/2011/05/01/ten-disabled-people-with-regular-tv-roles-right-now/

3.) mygimpylife.com 

 

But They Said it Was “Accessible"

So yesterday was officially 3 months that the blog has been up. The Facebook page has only been up a few days but at the end of yesterday, we had 887 page views on the actual blog and 54 likes on the Facebook page reaching an outstanding 607 people. It is amazing what 3 months of my writing have produced. I have had help from so many people. Emily Ekstrand, Kelsey Waltz, and Haley Larson. I’ve also had help from a great T.V. show called My Gimpy Life. It is this show and certain life events that inspired me to start writing again. Here’s to more success for the Voiceless Minority as we move forward! However, with all that success and cause for celebration, there are still many issues that need to be addressed.

       As I have written before, the Americans With Disabilities Act was signed into law in the summer of 1990. I will not rehash it again what exactly the act covered (if you would like information on that either visit “ada.gov” or my previous blogs). I simply mention the act here because its 23^rd birthday is coming up on the 26^th of July. When I recently asked the question on our Facebook page about whether anyone had future ideas for blogs this response came up…

       Joe Peet commented on July 6^th and he recommended a blog on “real-time access.” Now for those of you who are new to the disability advocacy fight and I do call it a fight. Real-Time Access is an interesting concept. The idea provides us (the disability community) access to things on paper. What it does not do is clearly defined how that access should be presented. Instead, the language is left broad and ambiguous. In short, the language leaves the decision up to human intuition or interpretation. This is all well and good but I think the idea forgot one very important point to consider. The developers of buildings and producers of products, for the most part, aren’t disabled because we are rarely given opportunities to pursue everyday jobs. That being said, what the majority the able-bodied people consider accessible, oftentimes is not. I don’t mean to offend a majority of readers but I’m just being honest. I will give several examples to demonstrate my point. Some of these examples are my own and some come from others.

       As I have said numerous times, I go to a school in the North Western part of Pennsylvania and that school has its flaws like every other school, but it tries to build itself as one of the most handicapped friendly schools, not only in the area but also in the country. Nothing against that school as they are the institution that will grant me my Master’s Degree in December if all goes well. However, I need to suggest a few things. As far as being accessible, most of the campus is, but crucial portions need to be fixed i.e. the giant cracks in the sidewalks that some power chairs and I’m sure manual chairs have trouble navigating over or around. How is it possible the school can spend money on new dorms but not fix their existing sidewalks to make them easy for a large portion of your population? Also, another issue that is prevalent on campus but is also a cross-venue the issue is the placement of the automatic door and elevator buttons.

I have a tremendous fear of elevators. Yes, I said it. Even though I use them any time I want to go anywhere above the first floor. I absolutely hate them. I don’t know why but I think claustrophobia is genetic or something—no, not really, but thanks, mom! Anyway, one of my biggest pet peeves is not having uniformed elevator buttons either in height or type. I am very short when sitting in my power chair. If I were to stand up straight, which rarely happens, the doctors say I would be 5’10. However, that doesn’t help me when I’m sitting down. There are two buildings in particular that I have in mind when I talk about the elevator button placement and height. One building s a good example and one building absolutely sucks.

       The first building has an elevator button cutout where the button protrudes from the wall and is one of the more conventional buttons you see in medical facilities and hospitals. It, in this case, is white and it is raised off the cutout a little bit. I have very limited hand mobility but even I can press this button by myself. If that wasn’t awesome enough, when I get into the elevator I can even select what floor I want to go to by myself. Sadly, this awesome elevator design is very rare on campus and in real life. At least in places that you need to go on a regular basis and not just when you’re sick.

       The other a building that I mentioned before has a button and it is placed in an area, which only the tallest disabled people can reach. Granted, like I said, I have very limited movement in my hands but there are very few people that I know who can use this button by themselves. There are those in manual wheelchairs who have more mobility than I do who are capable but even some of them struggle. The button is set into the wall and does not protrude from the cutout. I have seen this type of design in many places—movies theaters, Dave & Busters, local malls, and etc. I have a question for developers. Why in the world are these buttons in use still? Maybe I’m being too narrow-minded but, does everyone in the world think that disabled people always travel around with an aide who can push the button for them? The sad fact in my experience is that most people do believe that. As I have said as recently as the “Hey, down here!” blog we desire our independence too. If elevator buttons aren’t where we can use them they are useless.

       Another issue that I’ve seen which is a cross-venue issue is the placement of automatic door buttons. For those who are unaware (and I only mention this because the blog reaches international audiences now and some of you might not have an automatic door) but automatic doors can open with the push of a button which makes it easier for people who are slower or with wheelchairs to enter. There are several types of automatic door buttons but what I don’t understand again is why is there not a uniform type of automatic door button? Maybe it is, with the simple fact that, nobody consulted disabled people when they were designing them. However, I think we should start a focus group and ask disabled people how long on average does it take someone in a manual chair vs. someone in a power chair how long it takes to get through a door. Take the happy median and then set the button time for that! Also in that focus group maybe we could ask disabled people what types of buttons are easier for them to operate? I prefer the round, grey, metallic ones that are offset from their cutout. I hate the ones at my campus library (which some of my able-bodied friends have trouble pressing). Finally, before I move on to a new topic let me express one major complaint. What is it with the placement of automatic door buttons?! I am not kidding. I have seen buttons placed behind where the door opens at i.e. my campus library. Or below an average wheelchair height. Not to offend short people, but we are not ALL so short that you have to put the button by our knees. Enough with that rant. Let me get to an even more disconcerting issue.

       I’m a pretty an active individual with a disability. I like to go out and visit theaters or movies. Or even sporting events. A lot of the able-bodied people that will read this might not understand what I’m about to write about but someone, please explain why all the handicapped seating is in B, F, E! On the one hand, I can understand that the developers might do it to prevent people from standing up in front of us, and for that I appreciate it. A word to developers though, you’ve avoided me being blocked by some really tall glad or really robust person, but now instead of seeing the hockey game that I sometimes pay 50-100 a ticket for I only see little ants. In the case of the movies, you guys are getting better. You put us in the middle of the stadium seating, but you often don’t have enough seats around us for friends and companions. And god helps us if there are two people in a wheelchair in our party. Someone’s feet are getting crushed! I can’t tell you how many times I’ve been run over by another person’s wheelchair just because they are trying to back into the movie seat. Now I know you have a limited budget and limited space, but could you at least give us another inch to an inch and a half? So we don’t have to ask the poor lady who just sat down to get up just so we can situate ourselves? Thank you!

       A final issue I wish to bring to the table is that of the organization of the malls and stores. I do not intend to offend anyone in retail but I just have one simple question. Isn’t your job to attract the most customers’ possible so that you can sell us merchandise? Excluding those stores who discriminate based on weight or body type (coughcoughAbercromeandFitchcoughcough). If this is the case, I think you are missing out on a large population! No pun intended. When I say “missing out” I really mean making it difficult for a large population to enjoy an American past time known as “buying shit.”

       I am not a girly guy but I do like to go to the store and browse. One of my favorite stores to go into is Spencer’s. This is not a kid-friendly store but like many other stores, it is not wheelchair friendly either. I get that you have to have enough space for merchandise, but honestly…? Why is it that merchandise displays have to cover every inch of the store? I am not able-bodied but I’ve even seen able-bodied people that do not know each other have to get super intimate each other just to get by in that store. In fact, because of where I sit sometimes I am cursed with running into certain body parts of people that I really do not want to. Spencer’s is not the only store that fails to give any customer walking space. Another store that is one of my favorites has to be Bass Pro Shop. Forgive, me. That’s the redneck coming out. While Bass Pro Shop has a large center aisle for foot traffic, it like a majority of stores, also places the clothing racks way too close together! Every time I go in there my parents or person I’m with end up having to do the one thing I hate to have people do. They have to help me drive through the clothing racks so that we don’t end up buying the whole store. Part of them probably does this because I’m not the best driver, but I guarantee part of them does it because a 26-inch wheelchair base cannot fit within a half inch space without killing something.

       All that being said, I bring up these issues because they would not only benefit the disabled community if they were addressed but they would benefit the able-bodied community as well. I am going to be very blunt for a second and remind you that this is only my view on things, but it is my belief that some people rarely want to go places with people with disabilities because they don’t want to have to deal with inconveniences such as helping their friend. While I disagree with most of this premise, I do agree that wherever inconveniences arise due to the disability can be altered or should be. Wouldn’t giving able-bodied people more walking room (or in the case of movie theaters) wouldn’t more room lead to more satisfied consumers? Just a thought.

       In closing, I turn my focus back to the disability community. We are an active community given the opportunity. We are tired of sitting in the back of the room and we deserve to be on the front line like everyone else. 

Hey! Down here!

So, it's been nearly a week since the last time I posted here.  This is not to say that there haven't been things bubbling around in my mind, just that I've been a little busy.  Since the last time I wrote, I've been busy promoting the blog by creating a Facebook page.  You can now show your support for the blog and disability advocacy in general by visiting The Voiceless Minority on Facebook.  I've also been busy continuing to write my first full-length screenplay.  Now, however, it is time to get back to the meat of things. 

       I've written extensively about several different issues, including how disabled people desire to be treated equally but still use the "Disney World" principle, as I like to call it, cut lines, etc.  While I've said that, in most cases, disabled people do want equality and strive for it legitimately, it does not mean that they are always supported in their efforts.  I've also written about social acceptance and disability.  However, this past week, this issue has come up twice.  The issue has not arisen in my personal life, but I've had friends and acquaintances mention it.  Therefore, I thought I would write this blog. But I would take a different approach. 

       I have mentioned that legislation cannot legislate acceptance, and while I know that this is not my view alone, a young woman powerfully drove this point home in a poem. Sarah Smith is a young woman who has the same disability that I do, cerebral palsy.  I first met Sarah several years ago.  We both attended the same university.  I am not going to mince words. Sarah and I haven't always gotten along. Still, we've grown to respect one another because of our drive and determination to prove that, although we have obstacles that society calls disabilities, these obstacles do not define us.  What follows is the poem that this driven young woman has written.  It is used here with her permission.  Thank you, Sarah.

 

"I was born too early

small, fragile, and weak

they thought I would not survive.

But along with my will to live,

another token was bestowed upon me;

one that I didn't want to ask for or need.

 

"What is this token," you ask?

Well, the answer is quite simple.

For it is a cloak

of invisibility.

 

I carry it with me

throughout my life.

It was given to me by society

and shallow close-minded souls,

who believe my disability

defines me.

 

They walk right past me,

never bothering getting to know

the person beneath.

Or worse yet,

they pretend they care,

but really,

I'm just a pit stop,

until something better comes along.

 

To those cowardly people,

I say, "your loss."

You are missing out

on meeting someone

who is loyal, honest, and loving

through and through.

 

For those who have taken the time

to look beneath the label,

thank you

for giving me a chance

to live and love

undefined and free."

 

 

 

       Being nonobjective for a second, I must say that I love the poem.  I may not agree with everything that Sarah has ever said, but I was stopped dead in my Facebook clicking when I read this.  Back to objectivity now, if one indeed looks at Sarah's words, they cannot help but be struck by them.  Sarah brings to light a well overdue point.  Not only are disabled people often brushed aside like second or even third-class citizens, but they are also often unwantedly pitied and patronized.  We, as a group, is either exalted as heroes or we are wallflowers.  People rarely take the time to know us as people; instead, they get to see the machine or device with the person in it. They do not see, as Sarah says, a person who is loving, honest, and loyal, instead they see someone to feel bad for or to judge.  Sadly, this not only occurs in the general public, and the realm of academia, but it often occurs in social settings.  By this, I mean, we are not only looked down on by waiters in restaurants who glance at our companion to give our order, and professors when we reach the higher levels of education, but mainly we are looked down on by our peers.

       Now, when it comes to social invisibility, I refer to two ideas.  One is that we are not perceived to be capable or worthy of being in a romantic relationship.  While this idea is most infuriating to me, being in my late twenties and being human, I do feel that this is secondary to the second idea.  It is even more frustrating when our peers brush off our intellect in regular conversation and everyday interaction, and they brush off our ability to behave like them.  How often I hear the words, "You like to do that, you're disabled," or "But you're in a wheelchair," or "That's weird, I wasn't expecting you to act like that." It is almost like we are visible and invisible at the same time.  Well, it is time that the disabled community, as a whole, is recognized for who we are as people, and not just for the disabilities that we have to overcome.

Come On, You Know That Was Funny, Quit Being P.C.

So I've talked about some serious topics, but I've always thrown humor in on some level or another. Well, this one is going to be about the importance of humor and disabilities. To begin, let me get scholarly on you guys. What is "humor"? Humor has many different definitions, and it can be either

1. a comic, absurd, or incongruous quality, causing amusement: the humor of a situation.

2. the faculty of perceiving what is amusing or comical: He is complete without humor.
       These were found at Dictionary.com. There are many different types of humor to each person; other things can be funny. Some who fall on their face might be hilarious to me but might not be all that funny to someone else. What does humor have to do with disability? Everything. If one can't laugh at their obstacles, then they will be that much harder to overcome. I can't tell you how many times a day I make gimp jokes or lobster jokes. I call myself a lobster because my hands look literally like claws because they are so badly deformed.  Most people who know me have gotten used to it. However, even in my own family, there are times when they are caught off guard by my humor.

       Disabled people make fun of themselves quite often. What is rarer is the kind-hearted friend or family member who makes fun of the disabled person. An incident like this occurred recently during a family event. Rather than seeing me as an oddity, my six-year-old cousin decided to make up a lobster dance. In my view, it was hilarious! Everybody around the table thought it was for at least five seconds, but they quickly got offended. My question is, why were they getting offended for me when I was not? It's not like the child was malicious. He was trying to include me as an individual. He did not see me as something different. He just saw me as a funny dude. We all make fun of each other, but why do others have to get offended for them when people are making fun of each other? Another example of this societal offense can be found on the Internet.

       A hilarious comic named Stephen Lynch does a variety of songs where he makes fun of everything from the devil, too fat women, to people who play dungeons and dragons, and one-piece, in particular, is his most famous song. It is known as "Special Olympics." I am disabled and find it freaking hilarious! Because I know that Mr. Lynch is satirical and joking. He is not malicious in any form whatsoever. Some find it offensive, and I say to them, "You have a right to your opinion, and I have a right to mine. I'm glad you watched the video, and I'm glad you are expressing your opinion." What I don't understand is that a majority of disabled people love the video. This is the demographics that are being poked fun at in the video. If we love it, why is it that society gets offended for us? The following is a comment that I posted on the YouTube video, along with a few replies that I received. To protect anonymity, the names of the posters have been either changed or not given.

       My original comment for the video: "‪Jay Hahr ‪‪20 hours ago

I know that's entirely true. I find humor is the easiest thing for me to have, but people are often thrown off because I make fun of myself. I always say to them, "Dude, I make fun of myself because you can't make fun of other people if you can't make fun of yourself," and I love making fun of people. I know it's a YouTube video, but I might also mention it here. My blog on disabilities is thevoicelssminority.blogspot.c­om Check it out. I think you will enjoy it."

       The poster responded with: "It's funny I'm disabled as well, and it seems that everyone around me hears my friends joke about me being in a wheelchair and act offended, but I don't. I have noticed that it's non-disabled people who get offended about it and not the disabled people."

       He emphasizes my point. It is always the able-bodied population that seems to get offended for me. I would instead people ask me if I was offended then assume I was offended. I know my family meant well when they told the little child, but I feel like they could have handled it better. Some of them who read this might not understand why I think the way I do, but it's mainly because humor is a dying art in our society. Soon we are going to be too sensitive for anything.  Comedy is what keeps us from going crazy and shooting people in post offices. If they thought that the six-year-old was doing something wrong, they could have said, "Now, you can joke around like that with Jay, but with other people, you have to be more careful." Just some food for thought.

       I only bring this up now because I have recently shown the YouTube video to others, and some have laughed hysterically with me while others said, "How can you be an advocate while also laughing at that?" My answer is simple because I'M HUMAN. If we do not find hilarity in our misfortune, then we will only find misery. Misery is boring. If this offends people, then so be it, but I would rather laugh at my misfortunes then cry about them.

 

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.