"Son, not "sun"

So, on Monday, I started writing again for this blog. I’m trying to get my shit together. One would think by the time someone is 31; they would have figured things out. I have a great support system and parents who love me beyond measure, yet something is still lacking in my life. I did not know what this was until this morning. As I’ve stated in the other blogs, I attempt to replay conversations in my head after the fact. I was replaying one such conversation from a few months ago this morning when I realized it fit into exactly what’s going on in my life right now. On the surface, it seems as if everything is going perfectly for me. I am being considered for my first job, and from what I’m told, I’m high on the list of potential candidates. I didn’t mess up the actual interview even though I was nervous as all get out. I just had a visit with one of my best friends. Life couldn’t be sweeter, right? Well, I am sad to report that this is not the case. I never thought I’d use this blog as a therapy outlet, but a conversation that occurred recently with my mother and me, along with the dialogue that a former aide and I had several months ago, made me realize that perhaps I’m dealing with an issue that needs to be discussed on a larger scale about maturity and disability



I’ve always complained about how the able-bodied community coddles people with disabilities throughout my many pieces on this blog. While this may be true to no small extent society-wide, it isn’t true in all cases. Many people with disabilities are forced to face the hard realities of unloving and uncaring families. I am not coddled either, for the most part. However, I fall in between. I am nothing less than adored by my parents and support system, but I often fail to see it or take it for granted. I wonder if this occurs throughout the disability community. Usually, we get so wrapped up in how people treat us; we forget how to treat people ourselves. It is not my attempt to attribute all my wrongdoings to my disability, no. It is merely an acknowledgment of a flaw that I have to work on. I have lost friends and damaged relationships with people I love due to my self-centered view of the world. I cannot go back and change these actions, and the old saying that actions speak louder than words is true. However, this is my attempt to start fresh. To some readers, it may seem surprising that I am admitting that my life is not perfect. I have the chance to live a pretty awesome experience. If it isn’t perfect, it isn’t anyone’s fault but mine.

I use myself as an example to make this point; people with disabilities often view the world as victims. Maybe we are victims but victims of ourselves. The only ones we can control are ourselves. However, not to be too cliché, our actions do have consequences. Our world can be awesome or horrible or a mixture of both. It is up to us to choose the path we roll down.

What's so "special"?

My Random Rantings for the Night

I haven't written in a while on the Voiceless minority. I've been busy dealing with some medical issues and capturing and taking advantage of several opportunities that have come my way. More on that later –



However, the point of this blog is to get on my soapbox. Before I do so, I must say that this blog is a straight opinion piece, and it comes from the point of me being extra picky when it comes to semantics.



The other night I was watching one of my TV shows – the WWE- when they announced a partnership with the "Special" Olympics. When I first heard this, I went all noble, and my mind took over. I said, "Oh, here we go again, the mainstream media and the able-bodied community using the disabled as 'inspiration porn.'" For those who don't know what that is, the term inspiration porn was coined by disabled activists and comedienne Stella Young. It is the idea that the able-bodied community uses their disabled counterparts' achievements to inspire them. They use simple achievements, such as getting out of bed, and they see it as extraordinary. When I first heard the announcement of the partnership with the "Special" Olympics, I made the connection between that and inspiration porn immediately, and part of me believes this idea to have merit. It needs to be further explored, which I hope to do throughout this blog.



Once I had calmed down, I reflected on the "Special" Olympics concept as a whole. The overall idea is a good one. It gives people with developmental and intellectual disabilities an outlet for an athletic competition which they may not get otherwise. My issue with the whole concept is again, I'm picky on semantics, but why do we have to call it "special"? If we look at the "regular" Olympics, the emphasis is on athletic achievement and bringing the world together, to forget all our problems for a little while. To recognize a segment of the disabled community's accomplishments, we have the Paralympic games after the Olympics. This is an excellent concept as it recognizes disabled athletes for their physical achievements, and at no point are they referred to as "special." Instead, their achievements are looked at from an athletic standpoint despite their obstacles.

The Paralympics do not get as much attention as the regular Olympics, but they still draw considerable attention. My problem is with the media's treatment of the "Special" Olympics. As I said before in this blog, the concept is a great one as it allows people with intellectual and developmental disabilities such as Cerebral Palsy and Down Syndrome to participate in athletic events. The problem comes when the media capitalizes on the concept in the wrong way. Rather than treating these athletes like their able-bodied counterparts, in this writer's opinion, most of the able-bodied community infantilize an entire population through the way these games are presented. I am not saying this from the point of no experience. I participated in these games when I was younger. In my experience, every athlete gets a medal; to illustrate the absurdity of this point, I got an award for my driving ability. Anyone who knows me knows my uncanny ability to end up in the bushes or hitting a wall when I steer myself. The medal I received was for going correctly through an obstacle course. My opponent, a good friend of mine at the time, ended behind me but received the same medal I did. It has been a long time since I competed in the "Special" Olympics, and hopefully, this practice has ended. I am skeptical. If it has not, it is a further illustration of my point that the "Special" Olympics are not designed for athletic competition. Instead, they are intended to pat participants on the head and say, good job, buddy. These participation trophies do nothing to spark a healthy interest in competition and might do just the opposite. If anyone reading this still participates in the "Special" Olympics and can prove me wrong, I gladly welcome the correction and admit my error on this blog in a future post.

Even if this is not the case, I assert that organizations like the WWE, who greatly influence the media, use their platform to showcase individuals with developmental and intellectual disabilities inappropriately. Glorifying these individuals simply because they have a disability goes back to the idea of inspiration porn. On this particular episode of WWE, they highlighted one athlete in particular who was a participant in speed skating. The only problem with the way they highlighted him is that the athlete himself did not speak throughout most of the piece. Instead, members of his family and his coaches spoke for him. As a readers note, I have a family who participates in the "Special" Olympics to this day. My cousin does get great enjoyment out of the games, but our family does not treat her as extra special. They look at what she has accomplished. For them, it isn't about the medal; it is about the fun she had.

In closing, the "Special" Olympics concept is a great one, but I raise this question and point – why are the people who participate "special" just because they participate?

Take a Breath and Enjoy the Ride

     This past year I turned 30. They say, whoever they are, that 30 is supposed to be a significant turning point in life.

 

     Up until recently, I found this statement hard to believe, but events have occurred in the past couple of weeks that have changed my mind. For anyone who has been following my blog lately, they've noticed a couple of things; I've increased the number of posts I've written. Hopefully, you also saw a renewed passion regarding issues within the disability community.  It has taken some time to realize the origin of the change in my motivation, but now I think I have figured it out.

 

     During a recent conversation with my friend Eliza, she put things into perspective. Our conversation occurred weeks ago, and I thought nothing of it at the time. However, I tend to replay conversations in my head rather than finding their significance later. I was replaying this conversation in my head last night when a light bulb went off in my head, and everything we discussed suddenly made more sense. The discussion centered around my life and my grand plans; my friend did not try to downplay my grand plans. She just reminded me not to look too far into the future and live in the moment. Up to this point, I had been planning my life away from Florida and even the little town of Ocala. I still want to move eventually, but I realized between last night, and today there is a lot that I still need to do where I'm at.

 

     A lot of times, I think my grand planning has a lot to do with my disability. I know many other individuals like myself who sit and plan for a future that isn't guaranteed. In other words, to use my dad's business model, they have many ideas for the 10 year goal, but have no idea how to break it down into small manageable segments to reach that goal. I'm guilty of this myself. I have three incredible opportunities here in Ocala, but I tend to forget this and look forward to the next step on the life ladder.

 

     Thanks to Eliza and others, I'm slowly taking a deep breath and enjoying the moment. I'm currently building two self-advocacy groups in different parts of the state. I'm also lucky enough to be on the ground floor to develop a unique radio show about disability issues and news.

 

     I guess this blog's point is not only to highlight my accomplishments and what I'm doing now but rather to get the message across. In the 21st century, we are so fast-paced and technology-driven that we often forget to enjoy life for what it is. Before the race of life is run and we all stand at the finish line, why don't we want the scenery we are blowing past. This is not only a message for people with disabilities but also a message geared towards those of my generation as a whole.

I'm not a doll you can buy on QVC

 

     So, a conversation came up this weekend with a friend who is also my PCA, which made me think of a complex problem facing the disability community. The following sentence was spoken: "I don't understand why it's a problem when people protect you when you are in a wheelchair." Upon hearing this, I lost my mind. After I was done screaming incoherently in rage, I got to thinking about the statement, and I realized that the problem was not my PCA's problem; it is a societal problem.  

 

  In this writer's opinion, if you have any disability, most of society sees you as a fragile doll that needs protection. I'm here to say this: WE ARE NOT SOME FRAGILE DOLL THAT YOU CAN COLLECT AND BUY ON QVC; WE ARE PEOPLE! Some of us are motivational speakers, some of us are doctors, some of us have Master's degrees, and we are not happy being put in a box. This is very true for me personally. Recently, I had a conversation with my dad, who is going through his trials right now. The discussion centered around new opportunities that have been presented to me lately. I think about the "big picture" and think about what things will be like long term. I have trouble living in the moment, and my dad is pretty good about centering me. However, in this instance, he did what I think most people do with people with disabilities; he went into the over-protective mode. Granted, he may be overly protective because I am his son, but I see my world differently; I have the most wonderful sister who does not have a disability, and sometimes I feel like they are less protective of her. I'm not saying they do this on purpose; I'm just saying that this occurs.

 

    It is said that as a society, whether consciously or subconsciously, we have gotten to the point where we coddle an entire group of people. I know that I have written on the topic before in previous blogs; I wonder if I'm the only person with a disability that feels this way. I am not trying to rock the boat or come across as having a chip on my shoulder, as some have said. Instead, I express my true feelings about an important issue that is not getting as much attention as it needs. As my previous blogs have stated, it is not impressive if a person with a disability gets out of bed. How is it possible in the twenty-first century that we do not recognize the fight for disability equality as a civil rights issue? No matter what one's disability is, it does not define them as a person; they are still people first and need to be treated as such.         

Oh The Possibilities

I know I have written a lot lately; hopefully, it’s a trend that will continue. There are a lot of exciting things happening in my world since the Florida SAND conference. It’s funny how one event can put things in motion that you weren’t even thinking about before the event. Today I met an interesting person by the name of Chris. I have many big ideas, but I have realized that they will take networking and time to implement. I am starting to see that the universe puts things in motion when you least expect it. I was putting together my two-year plan, and it did not involve staying where I am at. I’m not saying that I will, but after the past few days, I’m more open to the possibility of it. I won’t get into great detail about the things that Chris and I discussed because it isn’t set in stone yet; I will say that if it happens, the world will be vastly different (at least in my little corner). I know this was short and sweet, more to come later. 

It's Time to Get Political Again

So, I was talking to a couple friends tonight and I realized that I missed another episode of Speechless. For those who don’t know, Speechless is a show about a young boy named JJ with Cerebral Palsy. JJ cannot speak and has a wonderful mom as a disability advocate. The cool thing about this show is that as a few shows in the past, they actually use an individual with a disability to play the disabled character. I wrote a blog early on in the history of this blog that was relevant to tonight’s episode. Tonight’s episode dealt with the idea of “inspiration porn”. I will not go into detail about the episode as I have not watched it fully yet. Towards the end of this blog, I will link the above-mentioned post. Why am I writing about it now? I am writing because it is amazing that a major network like ABC is finally paying attention to disability issues and portraying them fairly. Perhaps if this show gets picked up for more seasons the perception of people with disabilities in society may change in time. It is up to the mainstream media, people with disabilities and their allies to help shape societies view of a minority long silenced. When I contemplated writing this blog today, Speechless had nothing to do with the topic but I realize now that it is a key part of why I need to write the following: I am a Republican with a disability. Most people outside of the disability community would ask, "Why to attach something political to a disability?" Politics is a hard topic for people to swallow and so is a disability. Why combine such controversial topics? The answer is quite simple. It is time that people with disabilities take more of a political stance and fight for more of what they want, need, and desire. Anybody who read yesterday’s post knows that I went to the Florida SAND conference last weekend. There was a small political presence at this conference. But the number of attendees at the conference was small in comparison to the number of people with disabilities that need to be heard. I am writing today to not only complain but suggest a solution. I am currently working on a radio show about disability advocacy. The individual who gave me this opportunity put another idea in my head as well. To have a political voice one needs to have voting power. Individual voices can make noise but if a large portion of a population shouts the same message it is more apt to be heard. In the recent election, this could be seen through Bernie Sanders and Donald Trump neither candidate fit the typical mold and they didn’t do things quietly. It is the time that people with disabilities make their voice heard. I live in Florida and I am suggesting to any Floridian who is an advocate orally that it is time to build a disability caucus in Florida. Below are the names of all 27 Florida Congressmen and women, I am urging you to read the post I recently put up entitled An Open letter to President-Elect Trump. In it, I discussed some important legislation that is currently up for debate in the house. Read the article and go and read the legislation known as the “Time Act” and contact these congressmen and let them know that, to steal from your Florida SAND anthem “Our Voice Matters.”

Debbie Wasserman

Charlie Crist

Stephanie Murphy

Brian Mast

Llena Ros-Lehtinen

Carlos Curbelo

Mario Diaz-Balart

Ted Yoho

Val Demings

Frederica Wilson

Ron Desantis

Alcee Hastings

Kathy Castor

Ted Deutch

Darren Soto

Gus Bilirakis

Vern Buchanan

Francis Rooney

Bill Posey

Lois Frankel

Dennis A. Ross

John Rutherford

Matt Gaetz

Tom Rooney

Neal Dunn

Al Lawson

Daniel Webster

http://thevoicelssminority.blogspot.com/2014/06/i-dont-want-destiny-you-have-planned.html

http://thevoicelssminority.blogspot.com/2016/12/an-open-letter-to-president-elect-trump.html

Florida Sand, The First Time Was A Charm

So, this weekend I attended my first Florida SAND conference. At first, I wasn't sure what to expect; I had never been to an event like this. I had heard mixed reviews from those who have attended in the past. It started slow; there were a bit of technical and arrival glitches with myself and my PCA. However, once we got there, it quickly became apparent that this would not be anything like I had heard.

Friday night was a chill night; I met some pretty amazing people and lost Uno's rather exciting game of No official conference business that took place that night. Although my PCA won a bag of espresso beans for some strange reason, I was hoping we would win the autographed football but still pretty awesome.

Saturday was the heart of the conference, right away Saturday morning, I realized that something was different. My college brain had kicked in again, and I was in learning mode. I have tried two other academic endeavors since I graduated with my Masters, one in real estate and one in Political Science. Neither of those was as engaging as the Florida SAND conference was. I guess it just took my brain a while to realize that disability advocacy was what it wanted to focus on. As the Saturday session progressed, we voted on the legislative platform. Without getting into the details of the proceedings, I will say that we came up with two legislative issues: That of provider rates and transportation.

One of Florida SAND's essential functions is to provide a legislative platform for people with developmental disabilities. After the legislative part of the conference ended, we broke for lunch, where we were randomly mixed with other groups that had attended the meeting. We were then given a challenge to overcome, having the sense of humor that I find the word challenge ironic. The challenges ranged from how we would react to being denied the right to vote to the somewhat controversial challenge of meeting Donald Trump. While I am supportive of Trump, I will leave my feelings about that for another blog.

After lunch, the conference broke into my favorite sessions; characteristically, at that point, my body intervened. First, I witnessed an excellent presentation on marketing and fundraising that I was not familiar with. It was given by the head of the conference and her husband. After this, I was hoping to attend a session on recruiting allies and like-minded individuals. Unfortunately, medical issues intervened. I was able to come back near the end of the session and caught some great tidbits from a woman named Whitney and a gentleman by the name of Arizona.

 The day's final session piqued my interest because it dealt with increasing one's voice on social media. This blog has been going on for quite some time now, but I learned some valuable do's and don'ts for an increasing presence on social media and using it effectively to advance one's cause. The night ended with a dinner at a local Olive Garden type restaurant and an optional dance. Seeing as how I don't have all that great of moves with or without the chair, I spent most of the dance talking to some great people. I then went back up to my room to watch some TV before calling it a night.

 

The last day of the conference consisted of a general board meeting for all Florida SAND members. The conference wrapped up around midday on Sunday. Overall the discussion was very informative and very productive for me on a personal level. This was the first time that the conference had been held in nearly two years. However, it was hard to tell that there had been such a large gap between this conference and the last one. It seemed as if the conference and its organizers had put an extreme amount of effort to present a quality experience for all those involved. Some things need to be improved upon, but improvement is always a good thing; nothing is ever perfect.