Your friendly neighborhood super advocate is back! This time I have a question. Have we reached a point where it is okay to tell a “casual lie” rather than the truth?
Friday, April 28, 2023
The Art of The Casual Lie
Saturday, March 11, 2023
Thirty Years Gone but Not Forgotten; A Letter to My Pop-Pop, My First Best Friend
This Christmas will mark thirty years since the passing of my mom’s dad, or the person I like to call my Pop-Pop. To be quite honest I've been lost in my thoughts for a few days now.
Late last year I was presented with the opportunity to become a Florida SAND Fellow. The Florida SAND fellowship has allowed me not only to continue my writing which I have been neglecting for the last couple of years but equally as important, it has allowed me to strengthen my advocacy skills. There have been ups and downs throughout my fellowship but as they say, things happen when they are supposed to. As a result of my fellowship, I finally found the best friend I have been searching for my entire life. Nearly ten months ago on a dare from my caregiver, I approached my now girlfriend Samantha Lebron and started a conversation. I did not know it at the time, but God put me right where I needed to be.
For the longest time, I held a belief that I could never date someone in a wheelchair because of the childish assumption that our physical limitations would get in the way. Boy was I wrong! I now have not only found someone who I can bounce ideas off of, but my little blue-haired alien is just as quirky and nerdy as me. I never thought my dreams of traveling the world, starting a family, or exploring what it means to have a disability on a deep level would be shared by anyone. Recently during a conversation with my dad, my feelings were affirmed when he said something to the effect that he and my mom have seen a great deal of maturity and growth in me since I started dating Samantha. He also shared that Samantha was God’s answer to his prayers. Before Samantha, he was unsure if I would ever find a true best friend not simply because of my disability but more so because of my lack of self-confidence and maturity. As much as I argue and fight with your dad, you couldn’t be more right, you hit the nail on the head. Thank you for your kind words and vote of confidence; it means the world to me.
The concerns that my dad brought up in our conversation about my newfound maturity have bothered me for the longest time. I too never thought I would experience some of the things I have. Along with this thought, I have also often questioned whether or not I am a person that my grandfather would be proud of. I looked up to him like no one else. He was my first hero. He never saw my disability as something that made me different. He always treated me as if I was his best friend. I feel that on some level I have let him down. I have not always been the person that I am today. I can say that until recently I did not like who I was. I was one of the most negative people I knew, on the inside anyway. I have always been good at putting on a brave face and happy demeanor for my friends and family, but I have never been proud of who I am. All that changed quite suddenly.
As I was going for a roll the other day, it hit me for the first time that this year is the 30th anniversary of my grandfather’s death. As I started to cry and feel sorry for myself, a negative thought crossed my mind. I felt as if evil forces in the universe were reinforcing the idea that I indeed was a disappointment to him. As if in response to my thoughts, it suddenly started to lightly rain. Immediately I stopped crying and a broad smile came across my face. I realized that the rain was my grandfather sending his love from heaven to reassure me that I am indeed on the right path and not a disappointment after all.
Thank you, Pop-Pop, you have always been there when I needed you even if I didn’t know it. Although you are not here with me you will forever remain in my heart. I love and miss you every day.
Jay
Friday, May 8, 2015
Parenthood & Me
Almost two years ago, I wrote a blog about disability
parenthood called "Who Says We Can't Have A Family?" http://thevoicelssminority.blogspot.com/2013/07/who-says-we-cant-have-family.html In
it, I discuss several issues about being a parent and having a disability. When
I wrote the blog, I had just turned 27 and had a different view on life. As I
am approaching my 29th birthday, my perspective on the world is
somewhat the same, but on the disability and parenting issue, I don't know if I
still hold the same belief.
In
that first blog, I laid out the following arguments: It is natural to want to
pass genes to offspring, considering human life is just a blip in the cosmic
makeup of things, and all we have are the legacies we leave behind. While I
still agree with that argument, I find myself internally struggling with the
question. Although I believe disabled people as a group have the right to be
parents, am I, as a disabled person, capable of being a parent?
This
argument has been weighing on my mind for several days now. As much as I am
bound and determined to have a family, I wonder if I have ever accepted my
limitations enough to have a family. By that, I mean, I am aware that I will
not hold my son or daughter. In the first blog, I laid out physical ways to
overcome this. But I did not do the emotional aspect of the problem. To become
a good parent, one has to be emotionally secure with his or her self, to
provide emotional support to the life they bring into this world. The same
could be said for people with disabilities, except on a different level. People
who have disabilities have to be emotionally okay with themselves as people. I
feel this could be split even further.
People who have disabilities have to not only understand
their limitations physically, but they have also to know what they mean.
Physically correcting or not being able to hold someone might be possible and
practical, but will it compensate for the emotional closeness when they hold
the child. It is issues like this that I am not able to think about. Although
in the earlier blog, I have said that it doesn't matter how many poopy diapers
you change or how many balls you throw, I find myself not second-guessing the
statement, but wondering if it comes from the perspective of someone who has no
idea what it is like to play catch. I believe quality outweighs quantity, where
I am struggling, can be best summed up in this example: I love sports, so I
would hopefully instill a love for sports in my children. I look at my Uncle
Richard and see how much enjoyment he gets out of coaching his son and my other
little cousins, and I find myself asking if they love sports and I can't play,
how will it make me feel to have someone else play sports with them, even if
that someone else is my wife?
This blog may seem like it contradicts itself, but the
earlier blog on family, and it may be. I am not sure of my capability to not
have the physical/emotional bond that comes from the physical contact with a
child and be okay with that. Things may change in the future, but as of right
now, for this person with a disability, parenting is not in my future as much
as I would like it to be.
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.
Tuesday, December 3, 2013
Mental Health and Disability
There are a variety of disabilities. There are the obvious types, which can be seen, in physical disabilities. There are also hidden disabilities that impact a person’s learning style such as Asperger’s, Dyslexia or Dysgraphia, just to name a few. However, one type of disability that is not often considered a “disability” is that of mental illness. Whether it is Bipolar Disorder, Schizophrenia, or Depression these can be very debilitating, when one combines these disorders with a physical disability, the discussion virtually stops.
Tuesday, July 23, 2013
Who says we cant have a family
So, it's been about a week or so
since I last posted. Since then, I've gotten older. I had
my 27th birthday, which was a quiet one this
year. One of the more unexpected gifts that I got was a Voiceless
Minority T-shirt. It looks pretty awesome. I will soon post
pictures, thanks to my family for getting it for me. Speaking of
family, it due to recent conversations that family and disability will be the
subject of this post.
I
am not a psychologist, even though I took a few classes here and there. However,
I do believe it is human nature to want offspring. Our lives are only a blip on
the cosmic radar. It is through offspring that one leaves
impressions and legacies behind. This blog will not discuss how there
is an overwhelming number of disabled children in America that need to be
adopted, even though that is the problem that needs to be addressed, instead
let's talk about disability and love.
In
one of my earliest blogs, I talked about the eugenics movement in the
US. That blog is called The Dark Side of Disability. Supporters
of the eugenics movement felt that disabled people should not be allowed to
reproduce. In a sense, they were dictating for us without
us. I, like many others, find this to be unacceptable. In
a book that I am reading entitled, What We Have Done, an Oral History
of the Disability Rights Movement, by Fred Pelka, I continue to learn
more about the disability movement I have recently become so passionate
about. The opening line in the book hits me extremely
hard. It is a slogan that is used widely throughout the disability
rights movement. Simply activists demand, "Nothing about us
without us." This slogan refers to several things, but it can
be mainly applied to the family discussion.
I
recently turned 27, and like most late twenty-somethings, I have become a bit
more focused as of late. Apart from focusing on finishing a degree,
I am also focusing on what my future holds in all aspects of life. I
have decided that I am bound and determined to have a family. Some
have told me that this is perfectly reasonable, while others have launched the
following point against it. You would be missing out on so many life
activities of your kids, i.e., Playing ball, holding them without assistance,
changing diapers… wouldn't that be too hard for you? And still,
others have said you would be basically just donating sperm and being there for
emotional support. To all who have waited on the issue, I appreciate
it; however, I have this to say on behalf of myself and, I hope, also, on
behalf of disabled people in general:
What
makes a good parent? Is it how many times one can throw a ball back
and forth? Is it how many diapers one changes in a
lifetime? That is part of it, but it is not the heart of
it. The nature of being a parent is instilling caring and love into
another human life for eighteen years. By that point, you hope that
they have become good people and productive citizens. How often do
you look back and wonder, "Did I change their diaper right on that first
Wednesday home?" I realize that people with physical
disabilities are limited as far as the type of physical interaction they can
involve themselves in. However, accommodations can be made.
When
a baby is firstborn, he needs a lot of attention physically and emotionally. While
I am grateful that I can't change a poopy diaper, I present a way that a male
who is as physically challenged as I am can connect with his son or daughter. I
have often criticized these inventions as "hippie" or "new age."
Still, in all seriousness, those baby carriers one occasionally sees would be
the perfect solution to my lack of ability to hold my infant without "lobster-clawing"
it to death. The mother, my future wife, could indeed position the
infant in my arms and on my lap as my parents did with my cute, "Q-ball
headed" baby sister. On a final note in regard to males
and raising their infants, I'm sure with a little outside the box thinking, one
could even rig up a way to feed their small alien a bottle at three in the
morning.
While
I am not well versed in what a female has to do with nurturing and caring for
the infant, I am aware that she is often more physically involved than the male's
participation. To go out on a limb, I can suggest that if a female
was in my situation, her partner could take on diaper duties, and as far as
breastfeeding goes, there would be a way to adapt that as
well. Before I end this section on raising infants and physical
contact, I must ask the question, are our minds as a society so narrow that we
are unable to think about anything other than what we are used
to? To the several individuals who have recently tried to dissuade
me, I say that disabled people have great gifts to share with society, and it
is sad that you want to pass over those gifts before we have had the chance to
share them with the rest of the world.
The
physical care of an offspring is an issue, but others have raised a more
pressing and disturbing case to me when it comes to family. They
suggest that it might be hard for me because I'm missing out on certain
activities with my child. In response to that, all I can say is, "Come
on, man, you make that argument?" I have
missed out on various aspects of it; walking, running, standing, using the
restroom, etc. At first, I have accepted the issues of this part of my
disability. I have had enough time to deal with it. I acknowledge
that some disabled people have not accepted their disability for what it
is. Still, the majority of the disability community is well aware of what they
are missing out on.
Another point I will use to support my argument is the
example of single motherhood. With many single mothers in this
country, one cannot help but notice a few things. In many cases,
single mothers are not helped out by the fathers of the
children. One may ask how they deal with missing out on certain male
experiences crucial for male children to have. The answer is that if
a mother is thinking outside of the box, they seek other strong influences in
their children's lives. That being said, why couldn't this be the case if a
child had a disabled parent? Yes, my spouse or I may lack in certain
areas, but that is what a strong support system is for. Even though
it only takes two people to make a child, it takes various people, including
relatives, parents, friends, teachers, and others, to develop a child.
Finally, as I've said in many of my pieces, it is not my
goal to force people to see the world the way I do, but it is the goal of this
blog to show people that disabled people are human, too. We are not
defined by our disability. Oftentimes our disabilities are simply a
very small part of who we are. As it is in human nature to want to
pass on legacies and values, it is in the nature of the disabled to want to do
the same. I ask this question if we have overcome obstacles to this
point of our lives, what is parenthood but another obstacle to
overcome. The only difference is that this time, we want to struggle
just like everyone else.