Thursday, January 12, 2017

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. 

Wednesday, January 11, 2017

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


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. 

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.

Thursday, May 7, 2015

Good morning Baltimore

Throughout US history, race relations have been a divisive issue. Recently the death of a gentleman by the name of Freddy Graves has sparked the controversy yet again. Graves was a twenty-five year old African American living in Baltimore, Maryland; he encountered police after they stopped him for "for looking at them and then running from them." Graves was arrested and taken to jail. On the way to jail, he received a broken spine and other injuries. As a result of his injuries, he died a week after his arrest while still in police custody. His death would send the city of Baltimore into an uproar.

At first, the protest against the police treatment of Mr. Graves was non-violent. Protesters seemed to be peacefully voicing their displeasure over several issues, including the treatment of the minority community by the Baltimore police over decades. However, on the day that Freddy Graves was buried, tensions rose, and the peaceful protesters were overshadowed by violence. The violence went on for several days. It has included hurling objects at the police, luting, and burning down a CVS and senior citizen center built; there was also a planned purge at a Baltimore Mall. The rioting has raised many questions about race in this country. However, I find myself asking other questions as well.

The people that are rioting are not rioting over Freddy Graves. Instead, they use Graves' death as an excuse to voice their opinion about issues within the black community. I cannot argue with this. I say that throwing bricks and burning down buildings will not get them anywhere. It will only cause the majority of the people to overlook the protest and real issues, and instead, classify a whole community of people as thugs.  The riots have calmed down since the arrest of six officers, but we will have to see if charm city can bounce back and once again live up to its name. The exciting thing about the arrest is that there was not a race motive behind them. Three whites and three blacks were arrested in connection with the incident. The question now is, will charges stick in this case, considering that it involves law enforcement.

One final and interesting note about the Freddy Graves situation and the riots is local officials' response. On the initial day of rioting, the mayor of Baltimore said, "Let them lute, it is only property." As many have commented, this is perhaps one of the most asinine statements ever made by a political official. However, the words that came out of the Baltimore mayor's mouth were not the only mistakes made throughout the situation. The mayor's entire approach to the riots is questionable. On the first night, police were seen backing away from protestors. Since then, it has come to light that perhaps those gave them a stand-down order higher up the command chain. Whether this is true has not yet been determined, but the idea that it is even a possibility is scary. Now that the riots have concluded, the question remains "What do the Baltimore riots show us?"

As I said before, destroying one's city does not make sense to me. What it demonstrates is the lack of knowledge and ability to voice one's grievances effectively.

            The riots had little to do with one single death. Mr. Graves' death was only the tipping point in a volatile situation between two different groups with two different cultural experiences. Even in the 21st century, decades after the civil rights bus boycotts and the assassination of Martin Luther King, Jr., race relations are no better now than they were then. Some may say that this is a bold statement to make, I counter that even though we have a black president, there is still an institutional difference between being white and black in this country. The riots are only the latest example of hostility that may never end.

 

 

Wednesday, April 29, 2015

The waiting game

It has been a few days since I've written. I'm just writing this as a quick update. I have been in Florida for almost nine months. For the most part, things are going well. However, there is one issue that has still been a struggle for my family and me. As some of you may know, taking care of a person with a disability often requires that one rely on others' help. People who are forced to rely on support from others usually have two options; they can either pay out-of-pocket or go through a state waiver.

            It is impractical for most people to pay out-of-pocket if I used myself as an example. I need 24-hour care. Suppose one was to pay out-of-pocket at the rate of $10 an hour that would equal the following.: $240 a day, $1680 a week, $6700 a month, and $80 640 a year. This is not a practical solution for the long term. The only long-term solution is to go with a state waiver. However, the waiver itself presents problems of its own.

              If one applies for the waiver, there's generally a waiting period of several months. In my case in Florida, it has taken 8 1/2 months even to get partial aid care.

While this partial aid care helps out a little, my family is left to help with my aid care or fund the rest. While I've been dealing with this issue, it has caused me to ponder a more significant problem.

            As of now, the aid care system is not federalized. It differs from state to state. This means that if a person gets many hours in one state, it does not transfer from one to another. There is no uniform formula for determining the maximum amount of hours someone could get. For example, the maximum in Pennsylvania is 84 hours a week, whereas, in North Carolina, the max is 30-40 hours a week. I am unaware at this point what the maximum amount of hours in Florida is. But I have been told the maximum amount falls short of the 84 hours in Pennsylvania I received.

              I consider myself a moderate on most issues but when it comes to the aid care the system I feel as if the federal government needs to take over how it is run. If we can federalize healthcare, we should federalize care for those who need it the most. What would the federalization of aid care provide? It would provide a uniform system, which would examine individual needs. Still, more money would be given to the budgetary needs of the people who are using the service. This is just food for thought.

 

            Until next time thank you for reading & fear nothing but regret less!

Wednesday, April 22, 2015

The Disability News Network

           The news in America has become constant recycling of all the same stories. With the advent of cable news, the news is on 24/7 on some channel or another. You have three major providers, Fox News, CNN, and MSMBC. Along with these providers, you have local affiliates of ABC, NBC, and CBS. But all these channels tend to tell the same stories. Now there is a new type of news network out there.

 

            The Disability News Network, or DNN, is a news network run by DST, Developmental Service Trainers, in Ocala, Florida. DST is a personal care company, which uses the radio station to provide a voice for people with disabilities. Currently, they do not broadcast all the time and are in the process of re-vamping their broadcast schedule. Even though they are based in the U.S., now they only have 1200 listeners. Most of their listeners come from China and Switzerland. Although this is a young radio station, it only has been around three years; it provides an excellent outlet for people with disabilities. Below is the link to the website where you can find the live feed to the station. I am in preliminary discussions with DNN to host a radio show. Future posts will contain more details. Thanks for reading, and until next time, fear nothing and regret less.