Joe Peet commented on July 6th 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.
Wednesday, July 10, 2013
But They Said it Was “Accessible"
Joe Peet commented on July 6th 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.
Sunday, July 7, 2013
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.
Monday, July 1, 2013
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.
Friday, June 28, 2013
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.
Tuesday, June 18, 2013
I Can Write but It’s Time for You to React
All men were created equal. This is what it says in our Constitution.
Discounting the irony in which it doesn’t mention the 3/5 slave’s clause. This
is otherwise a good concept. It essentially implies that no matter one’s race,
creed, religious belief, nationality, or any other distinguishing
characteristic in America, they should be granted an equal opportunity. I have
written a blog, which discussed a little bit of a piece of landmark legislation
known as the American With Disabilities Act. However, today while doing some
early morning reading, I was forced to ask myself this question, “Have we come
all that far?”
This
year on July 26, The Americans with Disabilities Act will celebrate 23 years.
It is almost a quarter-century old. It’s almost at the point where it has to
make a significant life decision and stop relying on mommy and daddy but has changed
for people with disabilities since the Act? My argument is that on the surface,
improvements have been made, but legislation cannot legislate a cure for
ignorance.
This
morning I found myself being proactive as my aide was sleepily frying me some
bacon. I was cruising several news sites. Yahoo is set as my homepage, but to
get a fair and balanced view of what is going on, I purposely look at both
Liberal and Conservative sites. However, I did not get very far. Those of you familiar
with Yahoo’s format know that there are often several stories along with a
slider on the page. Immediately, the first story this morning caught my eye. The
original title of the article by Jordana Devon was “Second grader in wheelchair
set apart from classmates in a school photo.” Myself being in a wheelchair, I
was intrigued by the article. The first thought that went through my head was, “I
can’t be reading this right! This is not the 80’s anymore! We have One
Direction and not NKOTB on the top of the Boy Band scene. No way can say what I
think it says.” So to make sure I was reading it right, I clicked on the
article. Unfortunately, I was reading the article correctly.
In
an extremely well-written article, the Yahoo Canada blogger lays out a
disturbing story. Jordana tells a story of a seven-year-old in British Columbia
who was set apart from his classmates when taking a second-grade class photo.
The little boy named Miles Ambridge can be seen in the picture, trying to
strain his body to be a part of the group. Jordana goes on to explain Miles’s
disability as Spinal Muscular Atrophy. As she said in her article, Miles had
been confined to a wheelchair ever since he was little. The report then gives
readers the viewpoints of what Jordana would display as “heartbroken parents”
in which the parents demanded a re-shoot of the class photo but were given the
usual rope-a-dope-it’s-not-my-fault-response. It’s the other guy’s fault by the
school and the photography company called Lifetouch. Before concluding her
article, Jordana asks a very poignant question, “What do you think: Has this
incident been blown out of proportion, or should the photo company be ashamed
for its placement of Miles in the class shot?” Speaking from a disabled
person’s point of view, I will say exactly what I said on the web page.
As a disabled
individual, I do not believe this situation I being blown out of proportion. It
is not the 80’s anymore, and we have legislation that guaranteed the disabled
community to be given equal opportunity. Are we so messed up as a society that
we teach our children so early to ostracize those different from us? By the
looks of this photo, it is not the children who need to be in school but rather
the adults. As Jordana quoted Miles’s mother as saying, “Kids can be cruel, but
adults should know better.” Forgive me for saying so, Mrs. Ambridge, but yes,
they should, but sadly they do not. The photo that your son was a part of
clearly indicates a misunderstanding of difference. A misunderstanding that
legislation will not correct. I am genuinely sorry for what you and your family
were subjected to. I hope this incident does not jade you because while there
are those in life who are intolerant of differences—those of us who are
tolerant of differences far outnumber them. I am sure Miles is a great person,
as can be seen by his beaming smile. I live in Northwestern Pennsylvania and
would love to talk to you and your husband, along with meeting Miles, if at all
possible. What you guys have gone through is ridiculous and sad, but I applaud
your response to the situation whole-heartedly.
As
I said in my posting about the Yahoo article, what low Miles and his family had
to go through is appalling, but it happens more frequently than one would like
to admit. That being said, if Miles’s situation isn’t bad enough, there is yet
another story I heard about this morning that enrages me even more. When I
first heard about it, I could not even begin to blog because I knew if I did, I
would be angry and vindictive. Also, my blog’s purpose would be defeated by my
anger. After several hours of reflection, I was able to talk about the
incidence that I watched and not exploded.
As
those of you familiar with Yahoo who are aware, if you read one article, they
often have videos or links to other similar articles embedded within the item
you are reading. Jordana’s article on Miles and his situation were no
different. Near the end of the article was a video link that said, “Teens Steal
Man’s Wheelchair On Long Island, Brag About It.” After reading the article on
Miles, needless to say, I was in a mood to be aggravated. So I clicked on the
video, which can also be found below. The video came out of Niagara County and
a news organization there. It was of a News broadcast where a News Anchor was
beginning a story. Superimposed behind her was a picture of a
wheelchair with the words “Wheelchair Stolen” underneath it. Quickly they cut
to the main level. A man named Vincent had his wheelchair stolen from his home
by a pair of 14-year-old boys. The boys, after taking it for a “joy ride,”
admitted to dumping the heavy chair in a nearby bush. Unfortunately, it is
believed that someone saw the chair and unsounded with it. This leaves Vincent
in a predicament. Vincent is now forced to go around in a manual chair and be
pushed around by his mother and others.
These two stories
mentioned above not only irritate me beyond belief but re-emphasize the
importance of education and advocacy. I am well aware that no matter where one
goes, they will find ignorant people, but only through blogs like mine are
advocacy groups such as United Cerebral Palsy. T.V. shows like Teal Sherer ‘s
“My Gimpy Life” that a better understanding of disability will hopefully one
day come to light. My goal in re-telling such horrible stories like this is to
spark, you the reader, into action!
As a disabled
individual, I can be outraged and say how messed up these scenarios are, and it
is my responsibility as a writer to do so. Still, you, as a reader, have
responsibilities as well. It is only through acceptance of differences and your
outrage at these situations that little boys like Miles may find a day where
they are no longer ostracized for something they cannot control or help. Miles
may be young and innocent now, but that innocence will not last long. He will
one day realize that he is different, as many of us do. However, if society has
changed even just a little bit by the time this young man reaches that age,
then maybe he will not be ostracized for his differences but possibly
celebrated. Then maybe young boys will think twice before stealing somebody’s
lifeline to independence. I don’t preach very much, but that’s some food for
thought.
Footnotes
2.) http://mygimpylife.com/
Sunday, June 16, 2013
We’re Really Not That Different
It’s been a while since I’ve written. I’ve been busy and am currently entered
in the Screenwriting Challenge 2013 presented by NYC Midnight. So I’ve been
bouncing around ideas for that. However, I watched a music video today that got
me thinking about an old friend. In turn, that got me thinking about the idea
of disability and relationships. For this blog, relationships are not talking
about friendships but relationships on a romantic level.
I
ended up watching Rascal Flatts “What Hurts the Most,” which is a good video,
and it got me thinking about someone I used to be close to. In this blog, I
will refer to her merely as KB. Those who know me will know the initials, but
since this is being read about the world, I want to protect her anonymity a
little bit. Anyway, what hurts the most got me thinking about all that was left
unsaid between me and this individual and the personal walls and hells I’ve put
myself through. Once I was done having a moment of self-pity, it got me
thinking about a larger concept about disabilities and relationships. Before
one continues, I feel it is essential to place the following video here: I got
the title for my blog. http://www.youtube.com/watch?v=-r9KAU-RKu4
As my one friend said, it is a relatively progressive video which shows that
people of all shape, sizes, race, and beliefs at their core all possess
fundamental needs and desires. That being said, there is a message that I need
to espouse.
As
I’ve termed them, “exceptionalities” are no different, but when you have a
physical exceptionality, it seems as if you struggle more to find a healthy
relationship. This next piece of the blog may be a little uncomfortable to some
readers, but it is the reality of my life and those similar to me.
A
certain amount of physical contact, whether sexual or otherwise, is necessary for
any healthy relationship because words can only communicate so much. Sorry to
keep referring back to music in this blog, but it is like the one band known as
Extreme with their song More Than Words in which the song says, “What would you
say if I took those words away?” http://www.youtube.com/watch?v=UrIiLvg58SY
They emphasize that
words can only do so much. Physical contact is necessary. This is why I hold
the following belief, and I also believe many others who are disabled like I think
that it is tough to date somebody who is more disabled than you if you are
disabled. It may not make sense to one who does not understand the dynamics but
let me give an example. If I were confined to a power wheelchair and the person
I am dating is also confined to a power wheelchair, it is tough to lean over
and give them a hug or kiss. Some individuals overcome these obstacles, but
with my limited mobility, I have determined that it would be impossible for me
to date somebody as disabled as I am. Going along with this, I often find
myself attracted to non-disabled individuals.
No,
I do not know what it’s like to be able-bodied at all, but I do know what it’s
like to be a 20 something individual in my generation. It appears as if a
majority of my age, whether male or female, is looking for a quick fix hookup
type scenario. As a disabled person, I have needs as well, but I do not view
sex the way my generation views it, but I acknowledge that even though I am
physically disabled, I do have desires. One will find that if they ask a
majority of disabled individuals whether they view sex as a casual thing or not,
they will admit that they have strong sexual desires, perhaps stronger than those
of their non-disabled friends. I cannot explain it, but this is just what I
have experienced. That being said, there is a common problem when one has a
physical disability. We often end up being the emotional boyfriend or
girlfriend to someone rather than their actual significant other.
What
do I mean by emotional significant other? I have had many friends in my life,
and I know other physical people who have also been in this situation. Where
are you in friendship with somebody of the opposite sex? In the beginning, you
feel no attraction to them because, unlike popular belief, we do not want to
date everyone we are surrounded by if we have a disability. However, as the
relationship grows, they find comfort in you as a disabled person because of
your perspective on life and your way of looking at things, and they will come
to you with their problems rather than their significant other. This, in and of
itself, would not be a problem except that disabled people are human too, and
eventually, feelings will develop in some cases. When this does happen: I will
use an example from my own life but protect her anonymity; we will call her
Cristina. Cristina and I were friends my sophomore and junior year of
Undergrad. She started working for me as a part of my homework aide staff, and
quickly we saw that we were going to get along. We started hanging out more
outside the work environment. When you work with somebody constantly, as near as
I do with all the people who help me, you will see sides of them that they
don’t show the rest of the world.
Everyone has bad days,
and everyone needs someone to listen to. Well, this occurred with Cristina. She
was having relationship problems, and I was a good friend, or so I thought
until one day she said to me, “You would be the perfect boyfriend except you’re
in a power chair. I don’t know if I could handle it.” This is a legitimate
concern, but I had no attraction to her, so I blew it off. As the days and
weeks went by, however, the interest began to develop. Eventually, we revisited
the conversation, and I said, “A while ago, you said I would be the perfect
boyfriend except for the fact I am in a chair. What did you mean?” She replied
with one of the most hurtful friends that a friend has ever said to me, “I
don’t know that I could be with you because you’re in a chair. It has nothing
to do with you. It’s just your chair.”
First
off, that doesn’t even make sense because of the chair; I may not like it is a
part of who I am. If you cannot accept all of someone, how can you possibly be
with them? Second off, I have heard people equated not like women of color, and
it may be the same, but I do not see it that way. I see it as “I like you, but
there’s something wrong with you, and if you could fix it, you would be
perfect!” That comment from Cristina sent me into a deep reflective thought
period. Or at least that’s the politically correct term for it. It sent me into
a dark period where I had issues accepting who I was and contemplated suicide.
Not cool, but it helped in the end. To end the Cristina story, let me say we
remained friends for a couple of months longer, and she thought she could
handle it, so she led me on. She liked the attention I gave her but was too
afraid to hurt my feelings to say that it wouldn’t happen. I lost a good friend
of mine Sarah Thompson over this. I should have listened to her, and this is my
apology to her. I hope she can forgive me. Back to my point, though.
Persons with disabilities find someone that they are attracted to, and the
attraction is stronger because not a lot of people give persons with
disabilities the time of day in that department. Sad, but true.
The
Cristina example was to illustrate what I’m about to say. Relationships with
persons with disabilities or exceptionalities are not that different. Still,
they do not occur very often because of two reasons: one being the able-bodied
object of affection is afraid of something or another, mostly having to take
care of the individual instead then become a partner or two that the disabled
person’s expectations of their partner.
There
is a small percentage of physically disabled and power chair bound people that
ruin it for the rest of us. They expect the person they are with to take care
of their every need. This means both physical, aka sexually, and physical, aka
non-sexually. Persons with disabilities that small portion anyway sees their
partner as a full-time caregiver and not a partner. This is what society has ingrained
into abled-bodied persons’ subconscious that it will be this way. I am here to
tell you that it will not.
If
a person with a physical disability who is either bound to a manual wheelchair
or a power wheelchair truly cares about an individual, then they will not let
you perform their personal care tasks whenever necessary. We are not that
different from you. We laugh, cry, dream, hurt, we want, we love, and fear. The
only thing that makes us different is our physical needs, and it is not your
job as a significant other to deal with those physical needs.
I
know this blog will not change society’s perception overnight or relationships
with persons having severe disabilities and non-disabled people. However, it is
an issue that needs to be discussed and brought to light. We cannot pretend
that disabled people are not human, and we cannot pretend that attractions do
not occur. It is only through discussion and frank conversation such as this
one that a few souls will change reality for the rest of us. In closing, I must
say that I do look up to those non-disabled people, i.e., Kayte Fry, who, at
one point or another in their lives, looked past someone’s physical presence
and found the human inside their soul. Although we do not speak anymore, Kayte
and I were not directly involved with your relationship with this person; I am
eternally grateful to you for realizing that we are not all that different.
Footnotes:
1.) Collin Raye “Not That Different” http://www.youtube.com/watch?v=-r9KAU-RKu4
2.) Extreme’s song “More Than Words” http://www.youtube.com/watch?v=UrIiLvg58SY