Today is
America’s birthday. I live in the best country in the world. Whether you are
liberal or conservative, Republican or Democrat, we all have opportunities in
this country. However, just because we live in the greatest country in the
world, it doesn’t mean that people don’t often surprise me. I do have all the
opportunity in the world. My disability anywhere else would be 10 times more
magnified then it is. I am grateful that I was born where I was, but sometimes
I wonder about people. As most of you know I am 27 years old and I have a
master degree in education, but that piece of paper doesn’t mean much to my
social disability. Yesterday, I was out in Erie at a movie, and I got the
following reaction from a lady in her mid to late 40’s. She saw me and my
caregiver and her immediate response was awwww. To this moment I still don’t
know what that meant, but it made me think.. Just because I have a physical
disability doesn’t mean that I have a mental one, but apparently you cannot
change everyone. As I celebrate this 4th of July
weekend, I am grateful for what America has become, but I still know that
America has a long way to go when it comes to treating disabled citizens like
everyone else, because apparently I am 27 and look like I have a mental
disability. I didn’t know that going to a movie with a caregiver automatically
made you have a mental disability. I am not saying that having a mental
disability is a bad thing, because I know people with them who are great
people. They just struggle in certain areas. What I am saying is that I hate
being grouped in one large category with certain stereotypes, but there are
certain things about the world and America that need to change. The question
is: Will it change in my lifetime? I am hopeful that the answer is yes, but I
am not expecting it to.
Friday, July 4, 2014
The AWWW Moment
Wednesday, June 25, 2014
Just A Few Questions
What is it to be disabled? Disability is a label that society
puts on you, but this label has preconceived notions that come with it. This
label often causes others to view the one with a disability as something less
than human. However, there is more to disability than just a label. A recent
situation that has come up regarding my disability has inspired me to write
this blog.
As
many of you know, I have Cerebral Palsy. Due to the Cerebral Palsy, I require
aide care. In a book that I am in the process of publishing, I describe my
journey through grad school and the aide care system. However, the aide care
system needs a wake-up call. Recently, I have switched to an agency model of
care. I am aware that this is a different type of care system, in that I do not
hire my employees anymore. However, lately, I feel like a pawn in the aide care
system chess game.
When
I accepted this agency to take over my care management, I was made specific
promises. Before I get into them, I must say that I am aware of my extreme
reliance on other people. That being said, the aide care agency promised me
that I would have a consistent team of care providers who were familiar with
somebody with my level of care needs. That has not been the case. The exact
opposite has occurred. I feel like I am in that annoying little shell game; you
see people play on the boardwalk. You never know where the marble is going to
be. I never know who will end up at my house, but that is not the worst part of
it, and that is not what inspired me to write this blog. That is just a little
backstory.
What
burns me up is an incident that occurred yesterday. They sent me an individual
who I have had issues with in the past. This individual is supposedly a
certified CAN, but she did not act like it. She was very uncomfortable with the
job's duties, such as taking me to the bathroom and whipping my butt. Even
something as simple as feeding me was a problem. I have reported this to the
agency before but yesterday was extremely bad. To top it all off, the agency is
a "no lift" agency. This means that their employees are not allowed
to lift me, which is fine, because I have what is known as a Hoyer lift. The
lift allows the user to hook me up with a sling and then pump me up into the
air to lift me in the chair to my bed or wherever. How can an agency be a no
lift agency and not train their employees to use the required equipment? Just a
thought.
When
I bring this point up to the agency, they reply that all employees are trained
on the equipment. Cleary yesterday was an example that they were not. This
brings up a more significant issue in the aide care game. Why do agencies false
advertise to get consumers in their payroll? I am used to aides
switching constantly, but it makes me wonder about people nowadays when
numerous people promised me. Why make a promise you have no
intention of keeping or unable to keep to make yourself sound better? Good
intentions are great, but they don't get you very far in the aide care game. It
is time to stop dealing with false promises but deals in realities. There
should be a better screening process for aide selection and agencies, mine and
others should not promise things they cannot or will not deliver.
Wednesday, June 18, 2014
Sad Times At KFC
What a disgrace! These are the
first three words that came to mind when I read an article on the social media
giant known as Facebook recently. The report detailed how KFC, a chicken place
famous in the U.S. A turned a little girl away because Pit bulls had recently
mauled her. According to the article, "She has turned out because other
patrons may be scared by her face and injuries. The link to the full report can
be found at the end of this post.
When
I first read this, I couldn't believe that it could be true. However, since I
read the article in the day and a half, I have read other people's posts about
the incident, which leaves me to believe that it is true. Not only do I feel
bad for the little girl who is most likely going to have psychological damage
for a long time, but I feel bad for society.
It
is 2014, and we still have people who hold archaic views on the difference. I
get that KFC cannot control their employees' attitudes, but I sincerely hope
that the employee who said this was fired. Since then, KFC has offered to pay
30,000 dollars towards the girl's medical bills. It's sad to think that this is
just a PR move, but that is honestly what I believe. In my opinion, KFC is not
doing because it is the right thing to do to fix the injustice done, but they
are doing it save face.
What
kind of country have we become that in 2014, the difference is still looked
upon individually so negatively. No, the girl did not have a permanent
disability, but she does have a temporary one. This is why I write about the
article here. The KFC incident reinforces my idea that disability is not
physical and mental, but social. Let me explain.
When someone is classified with a physical disability, in
society, that is, it means they are a lower class of citizen. What it means,
though, is that they do things a little differently. Their physical differences
do not limit them except in very few tasks. What limits them the most is
society's perception of what they should be able to do. The KFC individual has
such an archaic view of disability that he could not even think before imposing
social restrictions and barriers on the little girl. However, an incident like
this is not isolated. It reminds me of an experience in a movie called The
Music Within. The film is about the development of the Americans with
Disabilities Act. In the film, the lead character, a disabled man, is turned
away from a North West restaurant because of how he eats pancakes. In that
movie, the incident occurred before the Americans with Disabilities Act was
made into law, and it showed that people in that era were not accepting of
difference. My question is: how long before that era is over?
http://www.people.com/article/kfc-pays-medical-bills-girl-pitbull-att
Sunday, June 15, 2014
I don’t want the destiny you have planned for me: I’ll make my own. Thank You!
It's been a long time since I have written, but
I recently watched a video that got me thinking. The video is linked below. I
have shared it tons of times since I have watched it. In it, the speaker Stella
Young brings up an idea of something called inspiration porn.
She
says that the lie that has been perpetrated is more social than physical. I
could not agree with her more when I posted the following status "No, I am
Not an inspiration for getting my Master's degree and having a disability. No,
I am Not an inspiration for getting out of bed every day. Having a disability
doesn't make me inspiration, just food for thought." I got a mix back of
responses. Some did not understand my point for posting the status, my point
being that the inspirational things that I have done should have nothing to do
with my disability. My achievements should be based strictly on their merit.
They should not have an asterisk by them simply because I have a disability. I
haven't achieved much. I have done what you are supposed to do in life, but I
get extra credit because I am disabled, and no one expected me to do it. In my experience,
the only significant achievement that I have that is out of the ordinary is
that I have just completed a book.
The
book, however, is not yet even an achievement because it is not published. I am
working on getting it published, but I am not done yet. The fact that I got my Master's
degree is not an achievement in my eyes because a master's degree in education
is only as useful as the effort you put into it. I do not have a job, nor at
this time do I have any prospects. What I do have is 3 degrees that I have not
used. Determination to make society understand disability as not something
different, not something negative, but rather just another obstacle. Along the
way, I will encounter resistance, even from loved ones. Why is this?
As
I said, I have a master's degree in education. For that Master's degree, I was
required to take classes on "educating children with special needs." The
language and lexicon taught in these courses indicate the overall problem:
Society, with the rare exception, views disability as so unique and rare that
they do not know how to handle it. They are preconceived notions of what
disabled people can and cannot achieve, how their lives should or should not
go. This is even true in the case of my parents. Without getting into too much
of the debate we have had recently, I can say that parents often mean well but
do more than good. Just because our bodies are "physically disabled or
exceptional," as they call it in the education classes, doesn't mean our
spirits are. It doesn't mean that we don't have normal drives and
determinations. It doesn't mean we don't deserve to make our own decisions. If
anything, just because we don't have a disabled spirit, people are confused.
Common
assumptions I hear regarding my physical disability aren't always limited to my
mental facilities. Yes, people assume that just because I am physically
disabled, I am mentally challenged, but they make other equally hurtful
assumptions. For example, I have had many people that I know say that I am
crazy for going sky-diving because of my disability. I might be fantastic for
wanting to go sky diving, but my physical disability should have nothing to do
with it. Why should my disability hold me back from doing anything if I find a
way to do it? A more powerful assumption was that we never thought you would
live on your own. We are so impressed by what you have done. Why is it
impressive? Am I supposed to sit in the basement of Mommy and Daddy's house
forever? I guess so. Just because I don't live on my own normally doesn't mean
I am incapable of doing it. Yes, I have aides that come in and help, and there
are glitches along the way, which most people don't have to face, but I make it
work. I was even told by a close family member that they were surprised that I
am living independently. They never thought it would happen. I should not be
surprised by these comments, and in a way, I am not. I am amazed that it is 2014,
and we still have such an archaic view of disabilities.
I
realize that there are differences between generations, and sadly we are only a
product of our experiences. That being said, sometimes I feel that in my little
corner of the world, even though I know many people with disabilities, I am the
only one fighting against the role society has told us we should play. In my
estimation, it seems as if other people with disabilities are ok being used as
inspirational porn. They don't view their disabilities as a societal obstacle,
and maybe that is the problem. We need to stop focusing on the physical disability
model and focus on the social model of disability for a real change to occur.
Will this ever happen? If I have anything to do about it, I am afraid that I
cannot be the only voice in my fight. My circle of influence may be small for
now, and I will do what I can to irritate and go against my societal role, but
for those who know me, who also have disabilities, it is time for you to join
the fight as well. Don't accept someone else's destiny before you make your
own.
https://www.youtube.com/watch?v=8K9Gg164Bsw
Sunday, May 25, 2014
Moving Along
The
home is currently being built, so as far as a physical structure, I will have
an accessible place to live, but moving is never simple when you are non-disabled,
much less when you are disabled. Because I require so much physical care, I use
at home health services to provide that care. I use these services to avoid
going into a group home or a nursing home. These services fall under what is
known as home and community-based services.
As
of today, there are no uniformed national standards for home and
community-based care services. Each state can set its criteria as to how to
dispense these services. Why is this a problem, one might ask? Under the
current system, the way services are proportioned only accounts for disabled
individuals who want to stay near their hometown or area they live in
currently. There is a significant gap between uses if you are a disabled
individual moving from place to area. This can present a problem because it
does not view disabled individuals as people, but rather as fixed pieces on a
chessboard that stands still. Disabled people have just as much desire to grow
and explore the world as everyone else. However, there is hope on the horizon.
In
an article found in Disability Scoop, Michelle Diamante outlines possible hope
for people who use community-based services. She details what is currently know
about the impossible senate bill from an Iowa Senator to improve
community-based services. While the article does not include many details about
the account, Diamante does quote the senators senior aide as saying “(Harkin)
is currently looking at developing legislation that would enhance community
access, inclusion, and support to ensure that all individuals with disabilities
can receive home and community-based services and supports in their towns,
cities, and neighborhoods throughout America.” All of this came about as a
result of a report/study by the senator’s office, in which Senator Harkin
found” Chairman Harkin’s 2013 investigative report showed that the
integration mandate of the ADA, reinforced by the Supreme Court Olmstead
ruling, still is not being met across the United States”. To better understand
this quote, let us look further at the Olmstead ruling of 1999.
To
begin with, the Olmstead case had to do with two women in Georgia. They were
voluntarily committed to a psychiatric wing of a hospital. The women had both
mental and developmental disabilities. After their initial psychiatric
treatment was complete, it was determined that they should be moved to a
community-based program, rather than be confined to a nursing home or
institution. Unfortunately for them, both remained in the hospital for several
years until they filed suit under the ADA in 1999 for release from the
hospital.
This
case was critical because it determined, where appropriate, community-based
services should be sought over institutionally based services for people with
disabilities. The senators’ proposed bill may provide hope for increased
funding and fewer gaps in care for people with disabilities, but only time will
tell.
http://www.disabilityscoop.com/2014/05/19/senator-strengthen-disability/19374/
http://www.ada.gov/olmstead/olmstead_about.htm
Friday, April 18, 2014
IDD: Call To Action
Dear Best Buddies Supporter,
Last week, a landmark agreement was reached between the Justice Department and Rhode Island, which will serve as a precedent for years to come and bring a much-needed change in the other 49 states. Click here for the article:http://mobile.nytimes.com/2014/04/09/us/developmentally-disabled-get-more-workplace-protections.html?referrer
Doors once closed will begin to open for people with IDD to move forward as contributing members of our vital workforce. Best Buddies is poised, at the forefront of the supported employment movement, to maximize the opportunities for people with IDD across the country.
Anthony K. Shriver visits
Best Buddies Jobs participant
Arjun Hemphill at the Audi of America Headquarters.
For over 25 years, Best Buddies International has focused its efforts on including individuals with intellectual and developmental disabilities (IDD).
With the unemployment rate for people with IDD at 76%, we must work to engage this group of workers. Today, our Best Buddies Jobs program has expanded to eight cities in the U.S. and is now launching in several cities throughout Latin America, the Caribbean, and Asia. The goal of our employment program is to continue our mission of inclusion in the workplace so that people with IDD can share the same benefits as any work and experience the joy of being a contributing member of our global workforce.
People with IDD are enormously talented, loyal, hard-working, and driven individuals who can contribute to the workplace. Individuals with IDD are making significant contributions every day to businesses small and large; they change the landscape of corporate cultures positively. Their skills and abilities can't be overlooked any longer.
I challenge corporations worldwide to hire people with intellectual and developmental disabilities. With outstanding resources and proper support, it is an ideal time to invest in this incredible group of people to assist in growing revenue, improving customer relations, and effectively managing your operations.
Don't miss out on hiring this skilled, talented pool of workers. Please join me in supporting the work of Best Buddies Jobs and fostering a bright future for people with IDD to secure rewarding jobs, live on their own, become inspirational leaders, and make life-long friends.
With gratitude,
Anthony K. Shriver
Founder & Chairman, Best Buddies International
Sunday, April 13, 2014
All We Want is Opportunity: We are Not Asking for Special Treatment
It's funny how to blog
ideas come into my head. For those of you who have been following the blog, you
will notice that I haven't written in a while. Sometimes, as a writer, you find
that there are words inside you that you cannot even know needed to be put to
paper until a series of events occur. For me, this blog came about because of
three things: A conversation with my friend Josh, who is about to graduate, on
how difficult growing up and preparing for the real world is, the fact that I
just applied for my first "big boy" internship/ job and finally an
article on Autism. One may ask, what do these three things have in common? By
the end of reading this, hopefully, this will be clear.
As
a person with a disability, there are always obstacles in front of you, whether
your disability is hidden or visible. Some of these obstacles are bigger than
others; some relate to social situations, while some relate to other aspects of
life. That being said, no matter what one's disability is, I believe that we
all encounter tremendous obstacles in the job market. Currently, in the U.S,
according to Disabledinaction.org, there are approximately 51.2 million
Americans that have some level of disability. Also, according to this website,
32.5 million Americans have a severe disability. If we subtract the number of
children, which is 4 million ages 6-14, we can safely estimate that 47.2
million disabled Americans can feasibly work. I know that this seems like a lot
of statistics and that I am evaluating here, but if we note an approximate
unemployment rate of 13.7% according to Disabled World that equals 6.6 million
people with disabilities who are unemployed. This does not seem like a large
number, but it is double the unemployment rate compared to the general
population. The question must be raised, what is the cause of this?
Although
I am young and have little experience in the workforce, when someone tells me
that people with disabilities at 13.7% are twice as likely as non-disabled
people to be unemployed, something is alarming. The non-disabled rate of
unemployment is 6.7% of the able-bodied population. This is according to the
Bureau of Labor Statistics. What causes the discrepancy? Is it because people
with disabilities are not qualified? Do they not have the higher education
necessary to succeed? The answer is that they do, but it is societal barriers
and perceptions that have caused this significant gap in unemployment.
As
a disabled population, we have benefited from legislation such as the Americans
with Disabilities Act of 1990, and IDEA (Indivuals with Disabilities Education
Act), whose latest manifestation was 2004. However, these pieces of legislation
can only go so far. If people are unwilling to look past the disability,
whether it be intellectual, physical, or otherwise, all parties involved will
suffer. There is hope, however.
One
company, in particular, is focusing on a specific segment of the disabled
population. SAP, an international computer and technology company, leads
the way in something that should have already been a long time coming. SAP
recognizes that people with disabilities have unique gifts. To quote the
article, they do not see hiring people with disabilities as "charitable
outreach" but rather as a "smart business decision." SAP
is explicitly focusing on individuals with Autism and Aspergers, as they, for
the most part, have greater attention to detail than others. The company is not
cutting corners when they hire individuals with Autism. The individuals undergo
a rigorous screening process to see if they fit in with the company and
community. Autistic employees must have the same level of higher education as
all other employees, so no special favors are
given.
This
company's unique approach got me thinking. While I am encouraged that this
company is taking a significant step to improve people's lives with disabilities,
it also saddens me that it has taken for this to happen. I have been
a victim of the negative view of disabilities in employment and pursuit of
advancement. Although they are a terrific institution in general, the school from
I received my master's degree in education did not see my disability as a
positive when it came to student teaching. Instead, they focused on the
negative and all parties involved suffered. I was able to complete my master's
degree but did not gain the necessary experience to the student; therefore, I
am still unemployable.
It
is clear that having a disability, no matter what it is, is an obstacle that a
person has to overcome. The workforce may often be a challenge for people with
disabilities. Still, because of companies like SAP and their unique view on
autistic employees, there may be a light at the end of the tunnel when it comes
to disabilities and employment. SAP is leading the way and breaking down
barriers when it comes to working. Other organizations and institutions should
use SAP as a clear example when addressing individuals with disabilities. Just
because we are different in one way or another does not mean we are less
capable. We are only less capable if not allowed to prove ourselves as
individuals.
Recently,
I have applied to my first "big boy" job with an online newspaper,
and they are in the process of reviewing my resume and qualifications. At no
point in time did this company look down on my disability as a negative. In
fact, in some aspects, they have indicated that it may be optimistic. It is
unclear whether I will get the job, but that is not my point for mentioning it.
If disabled people are given opportunities to prove themselves just like
everyone else, it is amazing what society will find, and what resources they
will tap into.
Footnotes
1. http://www.bls.gov/news.release/empsit.nr0.htm
2. http://www.disabledinaction.org/census_stats.html
3. http://www.disabled-world.com/disability/statistics/twice.php