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.
Thursday, January 12, 2017
Oh The Possibilities
Wednesday, January 11, 2017
It's Time to Get Political Again
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.