Wednesday, February 19, 2014
Lets Get Intimate
Tuesday, February 18, 2014
Mental Health and Disability Part Two: Where Society Needs to Catch Up
Late last year, I brought up an issue that was not discussed very much in the
disability community, disability and mental health. As I thought about this
blog, I remembered a recent email that I got, and it inspired me to revisit the
issue. In the email was a story about how colleges are flunking mental health
treatment.
The
article described a young boy, Dan, who had mental health issues and made a
wrong choice one night in an attempt to overdose. To summarize, he did not
overdose. He was having trouble dealing with a new medication, and once his
medicine was adjusted, he was fine. However, his college did not treat him
appropriately.
His
health center referred him to a hospital, which they should have done, but the
administration's actions were incorrect. Instead of recognizing a
student in trouble, they treated Dan as if he was a criminal.
My
previous blog on mental health dealt with how society doesn't view depression
correctly. This latest article in News Week confirms what I had written.
Depression is still such a stigma that it is almost a dirty word even in higher
education. What does this have to do with disability? It has everything to do
with it. Depression and disability in general in our society is seen as
something dirty. When it is said that someone is depressed or disabled, they
are seen as unclean or unworthy. It is a shame that places of higher education
are perpetuating this stereotype. I can speak from personal experience when I
say that even higher education places view depression as a dirty word. Not only
did they kick Dan out of his school involuntarily, but also they did a similar
thing to me.
It
is said that the American land of immigrants is so afraid of difference. We
will not be able to progress as a society if we do not understand that
differences are fundamental to the growth, and not everyone is given the same
skillset. Some of us must deal with obstacles that sometimes overwhelm us. We
should not criminalize those who have depression or other mental health
afflictions; instead, we should strive to ease their pain.
This will not happen if we do not
admit that depression is not necessarily a bad thing. Depression, instead in
most cases, is our body's' way of telling us to reexamine what is going on
around us. I know most of society doesn't view depression the way I do, but
regardless of whether you agree with me or not, you have to agree that society
needs to be more accepting of mental health issues. If places of higher
education are so educated, why can't they lead mental illness acceptance? The
answer is simple.
Places of higher education are
scared of mental illness for the same reason society is scared of mental
illness. They are afraid that if we embrace mental illness for what it is, it
is an admission that the human consciousness is not as self-reliant as society
thinks it is. We need to accept that it is a part of the human condition to ask
for help. It is a part of our condition to be reliant on others. Keeping up
with the Jones's individualist type mentality that we currently live in, it is
taboo to admit that you go against the grain and do not subscribe to the
emotionalist culture we live in.
Colleges could be on the front lines
of helping those who are depressed, but instead, they sit at the back of the
class. It is time for a societal-wide change in disability and depression, and
change can happen if it starts now.
Wednesday, February 12, 2014
The Hero Complex
Being a new disability advocate,
I find myself continually plugged into various publications. One publication I
get news from is the American Association of People with Disabilities.
Every week they put out a handy newsletter entitled Disability Weekly.
In a recent issue in a segment
called In the News, they had a story about a mom who wrote a
somewhat controversial piece. Her piece was entitled My Child with a
Disability is not My Hero. As the title suggests, Miss Sarah Sweatt
Orsborn asserts that disabled people but disabled children are not heroes. At
first glance, even I, the non-politically correct writer, that I was taken
aback. However, after looking further into Miss Orsborn's premise, I have to
say I agree with her.
The premise of the article is quite
simple. Orsborn suggests that the term can be more harmful than
positive. From my perspective, as a disabled person, I cannot help
but agree. Every time I hear "Oh, you're so amazing," or
something of the like, I cringe. This occurs even when I listen to it from my
own family. How can I be fantastic for doing such everyday tasks such as
getting up in the morning and going to school? Every time someone comments on
these lines, I feel like it diminishes me as a person.
I am not saying that complimenting
someone for his or her accomplishments is a negative thing. I am realistic and
understand that we all have egos that need a little inflating now and then. The
point that Miss Orsborn and I are trying to make is that complementing somebody
is fine but merely complimenting them because of the obstacles they face
diminishes their self-worth and the work they have accomplished. Let me put it another
way; it is like saying that we did not expect you to set the bar so high for
yourself because you have this infliction. That not only causes a problem
individually, but it results in a group problem.
What is that group problem? Disabled
people as a whole have always expected less of themselves because society, in
general, expects less of them. If we begin this second-class citizen in the
doctor nation at an early age, it is no wonder disabled people set the bar so
low for them. I am a 27-year-old person with cerebral palsy who just
graduated with my master's in education. However, I did not graduate with teacher
certification, even though I had a 4.0 cumulative grade point average in the
program. So why am I not a certified teacher, one may ask?
Simply put, I listened to society
when they set the bar so low for me. Some at my school thought it was so
amazing that I was getting my masters, but they saw me as too disabled to teach
in a classroom. Even though it was not said directly, this was an example of
the hero complex. It's so amazing that I got so far; they did not expect me to
go any further and were unwilling to invest in me to help me do so. I should
have done not settle for such low standards, but I did, and I have learned from
it. It has helped me develop my voice as a disability advocate. It has also
taught me that as good intentioned as parents are, or even family members are
when they say to a disabled child, look how much you have accomplished with
what you have had to go through, this has to stop.
Based on their accomplishment, judge
their achievement, don't put a star beside it with a little footnote that said
he or she had a disability too. Changes in culture and society do not start in
Washington in the political arena. They begin with everyday people. If disabled
people and those who support them want to change the way disability is
perceived in this country, we have to start with ourselves. It is time that disabled
people's expectations are just as high as everyone else's because we may have
visible or not visible obstacles, but that doesn't make us any more or less of
a person.
Wednesday, January 29, 2014
Lessons Learned: Self-Reliance
So I didn't
write a lot in 2014 yet, but I promise that will change. This posting will be
my 40th blog. It is amazing what this blog has grown into a
little over nine months.
Nine
months ago, I was angry and bitter and didn't know how to deal with it. They
say life has a funny way of working out. I can't say that I would say that in
nine months, I found my voice or at least the beginnings of it. As this blog
says, I have learned a few things over the past little bit. I've written about
comedy, I've written about political issues, and I've written about disability
stereotypes; however, this blog will be a little different.
Maybe it's
because of how I was raised, but I have developed a fighter spirit that is both
a good thing and a bad thing. As I sit down to write this post, in fact, I
still remember the latest fight I had with my parents about being self-reliant.
Without boring you with the gritty details, let's say we disagreed on how
self-sufficient I should be at this point in my life. My fight with
my parents had nothing to do with a disability, at least on the surface;
however, it got me thinking about a disability community problem.
I've
read a lot lately since graduating from my master's program in early December
of 2013. I don't know whether it was intentional or not, but many titles have
been related to making one's destiny. The last book I finished, I am
Malala, was a highly publicized book about a girl shot by the Taliban
in Pakistan to speak up for girls' educational rights. That book not only
blended history and culture, but it struck me on a personal level. The
circumstances Malala had to overcome put her in extreme danger every day.
Regardless of that danger, she still stood up for what she
wanted. She knew no one else was going to give it to her unless she
proves herself.
Similarly, A Bold Piece of
Humanity, by Bill O'Reilly, discussed the controversial commentator's
belief system and how he had come to reach those beliefs. While some of Mr.
O’Reilly's political views may not sit well with some, the striking thing about
this book was that like Malala; he did not rely on anyone to hand him success.
No, he just took it.
What
does this all have to do with disability, one might ask? Well, it is simple.
I've noticed lately, and I include myself in this generalization as well, that
most people with disabilities let external forces control their lives. Often
they feel trapped by circumstance, so we do not complain when our aide care is
sub-par or something doesn't get done in a typical fashion because we are
disabled. No, we accept it as our reality. Well, the above two books, along
with something my father has been trying to tell me for forever, have finally
sunk in. Hard work isn't easy. I will use a parable from a
well-known book for those of you who need it put simpler. Whether or not you
believe it that Jesus of Nazareth is God as I do, the Bible does have one
exciting thing that everyone can live by. Give a man a fish, feed him for a
day, teach a man to fish, you feed him for a lifetime. This is not a wealth
criticism or even a social criticism; instead, in this case, it is a disability
criticism.
I
am criticizing those like myself in the disability community who often let
their circumstances define their lives. Yes, our lives may be
challenging, but our obstacles are no different than anyone else's. We are no
other than a single mom of four that I know who busts her ass every day and
sometimes goes without to help me and make her kid's lives better. We are also
no different from a 49-year-old man who goes to work every day and doesn't
smoke a day in his life but ends up getting cancer at 50. He still must get up,
go to chemo, and move on with his life. We are no different from my Dad, who
was perfectly healthy a year ago and is now fighting every day to keep his
spirits up and keep moving towards his retirement dream. I know that was
long-winded, but I do have a point.
Disabled
people think that because we rely on other people so much, whether we have a
physical or mental disability, we are not in control of our lives. I'm here to
tell you that our lives are what we make them, no one else.
If we do not have much physical
control, then we can demand high expectations of those who do have biological
control over our lives. Disability is not a limit, just a challenge. Quit
letting it limit you and start challenging it. Your experiences will be better
in the short term, and the world will be better in the long run.
Wednesday, January 15, 2014
Aide Care System; The Hurtful Loop Holes
So the New Year is just fifteen days old, but already I can tell that this year
will be different. That being said, I must write about a significant issue that
has consumed my life for the past six or seven hours. Today I was informed by
my personal care agency that one of my care workers could
not work due to certain issues. On the surface, this seems like
a non-issue, but it turned out to be quite a large one.
For
those that don't understand the aide care system, let me backtrack a little. I'm
not aware of whether I have mentioned that I live by myself in previous blogs.
I live in a small college town in the Northeast, which has a college that
caters to physically disabled individuals; however, college services are only
available if you live on campus. For the past three years, while completing my
graduate work, I have chosen not to live on campus. Along with that choice
comes several challenges that have nothing to do with academics.
In
the state I live in, there are three categories of options for those disabled
people who do not wish to live with their parents. One can either live in a
nursing home, a group home, or independently using what is known as an
independent living waver. Although I have chosen the third option,
the independent living wavers, let me briefly outline the other two options
before going into my choice.
There
are those outside the disabled community, and even those in the disabled
community that has preconceived notions about what the nursing home or group
home setting would be like. However, some of these perceptions are misinformed.
There are nursing home and group home environments that are very restrictive.
In the typical group home or nursing home environment, an individual pays rent
with their disability check or through a family member, trustee, or guardian.
The amount that the individual pays is used for various purposes, including
housing costs, daily meals, and aide care costs. In most situations, residents
are provided with three square meals a day cooked by the staff. They do not
have to worry about their care needs, not being met because there is always
staff available.
In some cases even, individuals are given a portion of their
SSI or SSD check back to spend as they wish. Critics of this system suggest
that the care quality is not always up to par. Often these facilities are
either understaffed, poorly funded, or a combination of both. While the
residents do not have to worry about their care needs being met, their care
needs are often completed to the bare minimum, and extras such as specific
grooming tasks may be neglected or done in a half-assed manner, if at all.
The
second option is a version of the group home/nursing home, which I like to
call the group house. Personal care agencies often run these, and they are
places where two or more individuals with disabilities or physical care need to
share a residence. It is not like a group home in the traditional sense in that
there are not 30 to 40 residents. Instead, these types of environments
typically house three to eight individuals. Three to five attendants usually
staff these facilities. These facilities provide the best of both worlds; in my
opinion, however, they are limited in that they have not yet become the norm.
Usually, people are forced to choose between a nursing home and the option I
chose.
I
chose to live on my own using the independence waver. The waver in and of
itself is a good idea, but it needs some serious retooling to be effective.
There are two categories on the independence waver; one can either be a
consumer who hires their aides, thus engaging in participant-directed care, or
one can use what is known as agency model directed care. I know I have long
explained the problem than usual, but I feel this is necessary to explain the
problem I had earlier. I have tried both participant-directed care and what I
thought was agency model directed care. I have found that in theory both of
these systems are good and well designed but the practice is much different
from theory.
As
a disabled man, I still cannot understand why a system designed in theory to
help make me independent in practice takes every shortcut to limit my
independence. Recently through no design of my own, care workers have either
been told they can't work for me or have chosen not to show up for mandatory
training activities. I had been with participant-directed care in the past, and
I purposely switched over to the agency to avoid this issue. Still, today I get
told that I am a consumer delegate, so it is not the agency's responsibility to
find me coverage in the case where they terminate a worker of mine. Granted,
they are doing their best to help me out, but I must say that I am angry at the
system on principle at the writing of this article.
If a company declares itself a personal care agency and you
go into a company with the impression that they will cover your gaps when
necessary, it should be the agency's responsibility to fulfill that
duty. I understand that I came into the current agency
that I'm with, with my aides from other companies. Still, I believe that once
those aides were forced to undergo training with the current company that I'm
with, that company should then assume responsibility for them. I will not throw
the current company I am with under the bus anymore except to say that yes,
they are within state laws to do what they are doing, but I think it is morally
appalling that such arguments have to occur.
The labels and terminologies used within the aide care
industry are set up not to benefit the service consumer but provide as many
loopholes as possible. The system designed to promote independence instead
creates much more stress and puts unnecessary burdens on individuals in need of
care. Rather than focusing on what they can contribute to the world, a large
portion of the disabled population has to spend a great deal of their time contemplating
whether or not they are going to have the necessary services. Throughout the
whole system, in general, not just in my situation, individuals are not willing
to take responsibility for their part in the process. Instead, they want to
pass the bucket so often that the disabled person gets discouraged and stops
making noise.
I'm well aware that this writing piece may ruffle feathers
in the disabled community at all levels. However, it is time for a change.
Disabled people should not have to be limited to three bad choices. The second
choice for living independently needs to be more widely available: the group
house setting that I spoke of earlier. Secondly, parents and
supporters of the disabled need to put aside their preconceived notions of
wishing that disability personal care was perfect. Perhaps if such group
setting such as nursing homes and group house settings were not stereotyped and
vilified, both of these systems could be improved. Finally, the state systems
need to be federalized when it comes to the independence waver. Usually, I am
not a big supporter of the massive federal government; however, state agencies
have no uniformity. A majority of agencies will find any loophole to put the
burdens on the consumer and not themselves. I understand that the personal care
industry is not the most desirable field, but if you were a company in charge
of your employees, you could not let them control everything. I understand that
the personal care aide is a vitally important person but giving them too much
control creates gaps in care and loopholes that need to be closed. Overall, for
a system that started as a good idea, the personal care system needs to be
looked at too closely, no matter what type of care one is discussing. Unique
care should be freeing, not limiting.
Tuesday, December 17, 2013
Come on America: Those In Glass Houses Should Not Throw Stones
So I didn't write a lot in 2014 yet, but I promise that will change. This
posting will be my 40th blog. It is amazing what this blog has
grown into a little over nine months.
Nine
months ago, I was angry and bitter and didn't know how to deal with it. They
say life has a funny way of working out. I can't say that I would say that in
nine months, I found my voice or at least the beginnings of it. As this blog
says, I have learned a few things over the past little bit. I've written about
comedy, I've written about political issues, and I've written about disability
stereotypes; however, this blog will be a little different.
Maybe it's
because of how I was raised, but I have developed a spirit of a fighter that is
both a good thing and a bad thing. As I sit down to write this post, in fact, I
still remember the latest fight I had with my parents about being self-reliant.
Without boring you with the gritty details, let's say we disagreed on how self-sufficient
I should be at this point in my life. My fight with my parents had
nothing to do with a disability, at least on the surface; however, it got me
thinking about a disability community problem.
I've
read a lot lately since graduating from my master's program in early December
of 2013. I don't know whether it was intentional or not, but many titles have
been related to making one's destiny. The last book I finished, I am
Malala, was a highly publicized book about a girl shot by the Taliban
in Pakistan to speak up for girls' educational rights. That book not only
blended history and culture, but it struck me on a personal level. The
circumstances Malala had to overcome put her in extreme danger every day.
Regardless of that danger, she still stood up for what she
wanted. She knew no one else was going to give it to her unless she
proves herself.
Similarly, A
Bold Piece of Humanity, by Bill O'Reilly, discussed the controversial
commentator's belief system and how he had come to reach those beliefs. While
some of Mr. O’Reilly's political views may not sit well with some, the striking
thing about this book was that like Malala; he did not rely on anyone to hand
him success. No, he just took it.
What
does this all have to do with disability, one might ask? Well, it is simple. I've
noticed lately, and I include myself in this generalization as well, that most
people with disabilities let external forces control their lives. Often they
feel trapped by circumstance, so we do not complain when our aide care is
sub-par or something doesn't get done in a typical fashion because we are
disabled. No, we accept it as our reality. Well, the above two books, along
with something my father has been trying to tell me for forever, have finally
sunk in. Hard work isn't easy. I will use a parable from a
well-known book for those of you who need it put simpler. Whether or not you
believe it that Jesus of Nazareth is God as I do, the Bible does have one exciting
thing that everyone can live by. Give a man a fish, feed him for a day, teach a
man to fish, you feed him for a lifetime. This is not a wealth criticism or even
a social criticism; instead, in this case, it is a disability criticism.
I
am criticizing those like myself in the disability community who often let
their circumstances define their lives. Yes, our lives may be challenging,
but our obstacles are no different than anyone else's. We are no other than a
single mom of four that I know who busts her ass every day and sometimes goes
without to help me and make her kid's lives better. We are also no different from
a 49-year-old man who goes to work every day and doesn't smoke a day in his
life but ends up getting cancer at 50. He still must get up, go to chemo, and
move on with his life. We are no different from my Dad, who was perfectly
healthy a year ago and is now fighting every day to keep his spirits up and
keep moving towards his retirement dream. I know that was long-winded, but I do
have a point.
Disabled
people think that because we rely on other people so much, whether we have a
physical or mental disability, we are not in control of our lives. I'm here to
tell you that our lives are what we make them, no one else.
If we do not have
much physical control, then we can demand high expectations of those who do
have biological control over our lives. Disability is not a limit, just a
challenge. Quit letting it limit you and start challenging it. Your experiences
will be better in the short term, and the world will be better in the long
run.
Saturday, December 7, 2013
The Many Facets of Disability
Okay, so it's time I do some self-examination. It is time I will be honest with
myself. A lot of this blog has been egocentric; I mean that not I am selfish in
presenting disability. Instead, I have only focused primarily on those born
with physical disabilities, like myself. However, a recent article and a 60
Minutes interview concentrate on broadening the spectrum in which I see things.
Several months ago,
60 minutes did a piece questioning where all the new incidents of disability
claims had come from. When I saw this piece, part of me took offense to it, but
another part agreed with it. There was a comment that many people on social
security disability are lazy. However, after reading a recent piece published
by the Los Angeles Times, I am forced to reconsider my view.
While it may be true
that some on disability are there fraudulently, the piece by the LA Times broad
to light a new point of view. Perhaps, the claims of disability arising because
the overall make-up of the United States population is changing. Whatever the
case may be, the disability system will never be perfect, but as the article,
which I include below, stresses: it is time to change the system. We need
individuals who do their homework on disability. We need to rethink how we
approach disability from a financial and societal perspective before the
disability fiscal cliff is reached in as early as 2016—just some food for
thought.
Explaining the
'mystery' of where all the disabled are coming from
By Michael Hiltzik |
The apparent
explosion in Social Security disability claimants has provided
endless fodder for critics of the program in recent years. They're favored the
explanation is that the growth in the ranks of the disabled, from 250,000 new
claimants a year in 1970 to nearly 900,000 in 2008, comes from fraud or
laziness.
A new study by two economists at the
Social Security Administration should put that to rest. After
examining 36 years of demographic data, David Pattison and Hilary Waldron
found that population growth, the aging of the baby boom generation, and the
increase in the proportion of women in the workforce accounted for 90% of the
increase in the disabled population -- and 94% of the rise in the more recent
1990-2008 period.
The rest is accounted for by an
increase in the "disability incidence rate," defined only as the
factor left after the others are accounted for. But as they point out, the
incidence rate has been falling over the last 18 years.
RELATED: 60 Minutes' shameful attack on the disabled
The findings remind that disability is
heavily influenced by age and that America's workforce aged rapidly as baby
boomers got older. In 1970, some boomers were too young to be working; by 2008,
some were beginning to retire. As boomers moved into disability-prone ages
(think the late 40s through the mid-60s), the rate of disability in the
population would have risen even if none of the other factors was present.
Pattison's and Waldron's work considers
the importance today, as the disability program faces a near-term fiscal
crisis. The exhaustion of the program's resources, which could strike as early as 2016, demands action by
Congress. in the past, the underfunding of Social Security disability has
been addressed by shifting money out of the program's old-age trust fund to
shore up the disability fund.
Something better and longer-lasting is
required this time. Still, that effort isn't helped by the sort of uninformed
demonizing of the disability population retailed by people like Sen. Tom Coburn
(R-Okla.). Coburn appeared on "60 Minutes" not long ago to wonder
aloud where all the disabled people came from. If he only asked the
Social Security Administration, he'd know the answer. But does
he want to know? Nor does it help for "60 Minutes," National Public Radio, and other national
news organizations to report on disability without doing their homework. With the
publication of this latest study, they have one less excuse for getting it
wrong.
http://www.latimes.com/business/hiltzik/la-fi-mh-disabled-20131202,0,7260770.story#ixzz2mj1sRMJV