Celebrating Disability Awareness Month; The Possibilities That The Hive Presents People With Disabilities Are Something To Look Forward To

 Hi guys, it’s your friendly neighborhood super-advocate, Jay, back again with another blog post. I have written quite a few in the last month. I want to express my gratitude for your overwhelming support of not only my writing but, perhaps more significantly, I wish to thank you for your continued support of issues that affect the lives of people with disabilities. You constantly inspire me to come up with new content and have reassured me that this blog does make a difference.

 

Today, I thought it would be appropriate to write a post in honor of Disability Awareness Month. Anyone who has been following the blog as of late will remember that a few years ago, I wrote a piece for Florida Self Advocacy Central and reposted it here. The blog focused on an organization known as The Hive Inclusive Community in Tampa, Florida, which is currently set to open in late 2025. The mission of The Hive, according to their website, is “to foster inclusive communities where every member can grow, find purpose, and thrive.” The hive is the brainchild of one very passionate ally of people with disabilities, Tonya Whitlock. Ms. Whitlock was inspired to create The Hive by her son Trace. Trace is 29 years old and has a form of Cerebral Palsy. Although he cannot communicate in the traditional way most people do, he has a large voice and a lot to say. He does so by using a communication board. Ms. Whitlock became frustrated with the lack of services that people with disabilities have after they graduate high school in the United States. Her vision is to create a community for people with varying abilities, including those with “disabilities.”

 

I am honored to be on the board of The Hive and play a small role in helping Ms. Whitlock’s dream become a reality. The Hive has a long way to go to reach its goal of opening in 2025, but we are well on our way. Recently we held two fundraisers, the first of which was mildly successful. We had even greater success with the second event, a musical bingo night at a local brewery in Tampa. As community engagement increases, I am confident that The Hive will exceed Ms. Whitlock’s expectations. I am honored to consider her a colleague but, more importantly, a friend.

 

For those of you who want to learn more information about The Hive, please visit their website at:  https://theinclusivehive.org/

 

I know this was fairly short, but there will be more awesome disability content coming tomorrow or the next day.

 

Bye for now,

Jay

 

Former FL-SAND President Eddie Hall Uses SARTAC Fellowship To Make The Outdoors More Accessible For Floridians With Disabilities

Recently Former FL SAND President Eddie Hall who is already a powerful advocate in Florida was given the opportunity to take his advocacy to a new level when he received a grant from the Self Advocacy Resource and Technical Assistance Center or as it is commonly known SARTAC. This piece will highlight how when presented with the opportunity Eddie took full advantage of it not only to further pursue his own interest in recreation but at the same time, he has furthered his lifelong passion to make the outdoors accessible for all. 

I have known Eddie for several years now. We are both very involved in disability advocacy. Although I thought I knew Eddie I learned a great deal not only about his advocacy but on a deeper level I learned about what drives his passion for disability-related issues during an interview I conducted for a piece I was writing for Florida Self-Advocacy Central. At the beginning of the interview, Eddie explained why he became a disability advocate, to begin with. He was thrusted into the disability world when he became a paraplegic at the age of 8 after an automobile accident. While others may have let an accident like this derail their life completely, he would use it to become a lifelong champion for people with disabilities. Soon after his accident, Eddie would go on to be one of the first disabled students to graduate from the Polk County school district in Florida. His advocacy efforts were not just limited to the classroom. He would go on to get a job at Publix and become a vital member of a grassroots disability organization known as Florida Self-Advocates Network’D (FL-SAND). During his time in the organization, he would hold many positions. 

According to their website flsand.org “FL SAND is an independent 501(c)(3) organization formed to expand the self-advocacy movement in Florida. It works through the support of local grassroots efforts, and legislative platforms, networking with local business and civic communities, raising awareness, and promoting inclusion for all. FL SAND provides a united voice on statewide issues and topics that are important to self-advocates and all persons with developmental disabilities throughout the state.” Currently, there are 17 local groups that make up the organization. Eddie is the current vice president of Polk County Self-Advocates Alliance. Along with the local group, he is the former president of FL-SAND which required him and the other self-advocates on the Board of Directors to oversee the daily operations of a 501(c)(3) organization. The skills he acquired during his presidency would allow him to take his advocacy efforts to even greater heights. 

Along with his passion for disability-related issues, Eddie has a love for the outdoors. He is an avid fisherman who loves being on the water. Recently he was presented with the opportunity to combine his passion for disability issues and the outdoors when he received a SARTAC grant. As a result of receiving the grant Eddie was able to use the funds along with a non-profit he created to purchase two wheelchairs specially designed for the outdoors. 

According to actiontrackchair.com, these chairs are designed to be the ultimate all-terrain wheelchair. There are currently nine models that potential customers can choose from. Any of these nine models can be customized with ““30+ sizes, 21 color choices, and 40+ accessories to customize to your lifestyle.” To date, Eddie has taken full advantage of the two track chairs that have been purchased. He has held a series of outdoor hunts and gatherings on the beach. Later this fall he plans on hosting more hunting-related activities. He has also been able to get some self-advocates in Polk county out on the water. He said he also plans to hold more boating trips as well. 

In closing, now that you have read this entire article I hope you the reader see Eddie the way I do, he is a clear example of the idea that disability is just a diagnosis, not a mindset one has to live by. 

SARTAC: https://www.selfadvocacyinfo.org

The Personal Care Crisis Continues: How a Lack of Funding for Home and Community Services Reinforces Larger Problem Within The Disability Community

To all my regular readers I want to say welcome back and thank you for your continued support. To anyone reading this blog for the first time welcome, please make yourself comfortable and grab a seat or a parking space for your wheelchair and a beverage and enjoy what is to come.

In January 2014 I wrote a blog entitled “Aide Care System; The Hurtful Loop Holes” I have included the link to this blog at the bottom of this piece. That piece discussed a crucial problem when it comes to aide care that people with disabilities still face in 2023, however one area it did not cover in great detail was the lack of funding for aide care waivers. The waiver goes by different names depending on the state you live in. I currently live in Florida. Here the waiver is known as the Home and Community-Based Services Waiver. The waiver in theory like all the other waivers started out with good intentions but to be quite honest good intentions don’t pay the bills. In my previous blog on the subject, I talked about federalizing the home healthcare system, however, even if that were to happen there would still be a funding issue. Don’t believe me? Let me explain. 

Right now, I am honored to be a first/second-year fellow with FL-SAND (Florida Self-Advocates Network’D). Thanks to my involvement with the fellowship I have the opportunity to go to Tallahassee on March 13th and 14th for what is known as Developmental Disabilities Awareness Day. This annual event allows those with disabilities to meet with elected officials at the capitol and discuss crucial issues that impact people with disabilities in Florida. FL-SAND and its primary supporter the Florida Developmental Disabilities Council (FDDC) are once again encouraging legislators to put more funding into the Home and Community-Based Services (HCBS) waiver or as it’s known in the disability community the iBudget waiver. The need for the waiver to be funded is not a new concept nor is it exclusive to Florida. There are two questions some of you may be asking: where is the money going to come from? However, perhaps the more eye-opening question/comment I have honestly heard from people is, “Shouldn’t people with disabilities be happy that they are alive or slowly improving like they are, I mean they have the ADA or the Americans with Disabilities Act?” 

The above comment which was actually made to me several weeks ago shows that there is still a fundamental problem that needs to be addressed. It is my opinion that programs such as the iBudget Waiver receive such little funding and attention not only because we are several trillion dollars in debt but perhaps more importantly because of the way society, for the most part anyway, still has a 19th-century view of disability. That being said the only way we are going to increase funding for such vital programs is to continue to work to give people with disabilities a proper seat at society’s table. Yes, we have such documents as the ADA, but I argue that a piece of paper or law is not enough, however, let me give you one other piece of evidence that reinforces the argument above. 

In order to further prove that people with disabilities still occupy a literal seat at the back of society’s bus, one only has to look at the amount that personal care workers are paid. The pay does not equal the work required and it shows that the disability community is being marginalized to make a profit. My night aide during the week only gets paid $14 an hour. Last time I checked the minimum wage for personal care workers was supposed to be $15 an hour. I am curious to know what the agency charges. It would be safe to assume that they charge a whole lot more than $14 an hour. If I was guessing I would put the figure in the high 30s. I plan on investigating the issue further, and thanks to my fellowship I know the perfect place to start my investigation. I plan on contacting the Agency for Persons with Disabilities (APD) in Florida to see why the state mandate that was passed on July 1st of last year mandating a minimum wage of $15 an hour for all Direct Service Providers (DSPs). The first question I will ask is, “is there a reason agencies aren’t being forced to comply with the mandate?” Depending on the answer I receive I will follow up by asking them “if agencies have not complied are they given a grace period in order to comply? If so what happens if they do not comply by the end of said grace period?”

In closing, I know this is one of my longer posts, however, I feel the issue still needs a great deal of attention. While I agree with my fellow self-advocates that change is necessary, as I have argued throughout this piece the funding crisis highlights a less talked about issue. Whichever side of the debate you fall on there is no argument that this cannot be solved overnight. It will take the voices of the voiceless continuing to fight, in order to make the greatest change. 

Till next time, your friendly neighborhood super advocate has these final words, “no one will change your life but you, continue fighting fellow advocates and allies!” 

Unlikely Advocates: How One of America's Most Influential Families Became Some of the Disability Community's Strongest Allies

Recently I finished a book entitled “Rosemary: The Hidden Kennedy Daughter” by Kate Clifford Larson. I was turned on to the book by my girlfriend Samantha Lebron. She knows that I love history, especially political history. When I first began reading the book, I wasn’t sure what to expect. The Kennedy family has been written about extensively. I thought this would be another look at the Kennedy family through the lens of politics, and, to some extent, it was, but it was much more than just a book about politics.

As I got deeper into the book, I realized the book was about something more. It was on a deeper level about the history of the treatment of people with disabilities in the United States. Although Rosemary Kennedy was born to one of the most affluent families of the 20th century, unbeknownst to her she would face prejudices not only from the outside world but even from some members of her own family. Without recounting the whole book which I highly recommend you should read, I will say that what happened to Rosemary Kennedy reflected attitudes about disability at the time.

The book does a great job of not only detailing Rosemary’s struggles as a young child, but it also does a great job of using her experiences to highlight the subhuman treatment of people with disabilities that was commonplace during that era. However, Rosemary can serve as an example of how the best characteristics of the human race are often seen during the darkest of times. Not every member of Rosemary’s family saw her disability as a thing that should be looked down upon. In fact, her sister Eunice would become one of the disability community’s most powerful advocates. It is through the work of the Kennedy family and their relatives that two of today’s most powerful and influential disability organizations are even in existence. Eunice took a special interest in a program known as the Special Olympics and helped transform it into what it has become today. If this was not impactful enough, Anthony Kennedy Shriver would go on to found Best Buddies International. For those unfamiliar with the organization, it aims to give people with Intellectual and Developmental Disabilities (IDDs) the chance to live fuller and more inclusive lives by increasing socialization and opportunities for growth.

In closing, it is this writer’s opinion that the Kennedy family, a family who is often associated with heartbreak and tragedy, needs to be remembered not only for what they have undergone but also, they need to be celebrated by people with disabilities more than they already are. Without the Kennedys the disability rights movement may have taken longer to reach the goals it has so far.

Until next time, your friendly neighborhood super advocate, 

Jay

Setting Boundaries; How Do You Know the Difference Between Someone Being Friendly and Genuine Friendship When You Have a Disability?

It has been a few months since my last blog. However, with it being a new year, what better time than now to hit the ground running with a new sense of purpose and passion? It has always fascinated me how humans can become so disenchanted with life that we reach extremely dark places. To be honest, that’s where I have been the last few months, although it may not seem that way to outsiders. Depression rears its head in the most positive and happy people. You may ask what do I have to be depressed about? To answer without unloading every single problem I face, let’s just say there are quite a few things about my life that would depress most people. How you overcome the difficult times you face defines you as a person. We often require the help and advice of our friends, colleagues, and family to reach the other side of that “dark place.” Lucky for me, I have an amazing group of people that make up the support team that helps me navigate through my “dark place.”

Recently, I was having a conversation with one of those people when she brought up a topic that I believe does not get discussed the way it should be in the disability community. Although oftentimes, we have to remind others disabled people are just like everyone else. For the purpose of this article/blog, I am not referring to the differences our disabilities present physically or, in some cases cognitively, rather I am simply referring to the idea that, like the rest of humanity, disabled people want and deserve to experience the joy and happiness that come with genuine friendship. Bearing this in mind, I will use the rest of this piece to rather provocatively argue that although disabled people may not mean to, sometimes, in our pursuit of genuine friendship, we shoot ourselves in the proverbial foot. Don’t agree? You have the right to feel that way, but if you indulge me, here are a few examples to support my assertion.

I use personal care services to perform my everyday ADLs. This means I am with a caregiver in a one-on-one situation most of the time. The caregivers do mostly everything for me. They help me in the restroom, and until recently, they help me eat all the time. (I now occasionally, depending on what I am eating, will use adaptive utensils,) as well as many other activities throughout the day. Naturally, when people spend so much time together, they will become close on some level. What I believe happens to people with disabilities is that they believe that every caregiver they have will be a friend for life. Now I am not saying that caregivers don’t fall into that category by any means. I myself have a handful of caregivers that either work for me now or have worked for me in the past that I consider “genuine friends.” I am simply arguing that because our desire to make friends is so strong that sometimes we mistake someone’s being friendly forNeeds when you read it again, some time will friendship. Sometimes we’ll forget that boundaries must be established between us and our PCA. You must remember that it is incredibly rare in life to have true friends, either in a professional setting or otherwise. The few true friendships we are lucky enough to develop throughout life must be cherished and treated as special. Regarding people with disabilities, we must set boundaries with our PCAS and realize that most of them will not become lifelong friends.

There is yet another area where people with disabilities sometimes forget about the rarity of true friendship. I believe because a large portion of people with disabilities did not grow up with the same social opportunities as our able-bodied counterparts, it is hard for us to navigate the social structure of society. We often get so attached to people that we do not realize it is natural for people to come in and out of our life. That being said, it is unfair for us as people with disabilities to expect every friend we make to talk to us regularly. I have had to learn this the hard way. I now understand that life happens. Just because you don’t talk to someone regularly does not mean they don’t care for you.

In closing, I would like to say that the views expressed in this blog are my own. They may or may not reflect the views of other individuals with disabilities. As a final thought, I know that I have grown a lot, but I also know that to fully grow as a person, my journey will never stop.

Until next time…

Jason

Definition of Terms

1. ADLs-Activities of Daily living

2. PCA (Personal Care Assistant)

"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.

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. 

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. 

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 29^th 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.

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.  

The Forced Poor No More

s. If you have a disability, life is generally a struggle. It can be a struggle that can make you healthier or a battle that overwhelms you. In America, since the 1990s, the disabled community has had some form of rights to protect various aspects of life. Those rights have been talked about by me and others extensively. What has not been discussed much is the financial burdens that people with disabilities and their families have to undertake.

            To care for a child with a disability is a monumental task. It will consume the lives of people around him/or her. It will strain all parties emotionally and physically, but perhaps most of all, financially. The financial burden can range anywhere from a couple hundred thousand to millions. The financial struggle covers every aspect of life- from transportation to aid care to medical care. When the child grows up, the battle does not end.

            In America, we have a system known as social security. In terms of financial help for those with disabilities, we have two programs under the system of social security; these programs are known as supplemental security income (SSI) and social security disability insurance (SSDI). These programs provide financial assistance but perpetuate a permanent second class because, to qualify for these programs, individuals can only take a minimum of an income in the bank. The exact maximum number for a payment allowed is $2,000 in cash assets. Along with these programs, a person with disabilities can rely on Medicaid and Medicaid waivers to provide specific assistance such as aid care services and, in some cases, transportation. Although the financial aid provided by SSI and SSDI is excellent, the system has its drawbacks.  As I asserted before, the current system perpetuates a second class mentality because individuals are not treated like their peers. It also perpetuates a desire not to work in some cases because individuals on SSI or SSDI may lose their benefits if they even get a full-time job. Will the system ever change?

            The answer to that question is hopefully, yes. The hope comes in the form of something known as the ABLE Act or The Achieving a Better Life Experience Act. The act was first introduced in 2013 by a bipartisan group of Congressman, including Senators Robert Casey, Jr., and Richard Burr. So what did they teach exactly? They introduced a bill that, in theory, will better the lives of persons with disabilities significantly. Currently, there are 58 million people with disabilities in the United States. Through negotiation and compromise, the bill was signed into law in later December 2014. One of the compromises made is that the bill would cover those with “a significant disability.” It is estimated that 10 percent of the 58 million disabled people in the U.S. would qualify under this term, approximately 5.8 million people. 

Since the passage of the law, there have been several questions about what exactly are ABLE Accounts and what they cover. An ABLE account is a tax advantage savings account, which is not the same as a special interest trust or a pooled fund. These accounts are tax-exempt accounts, which can cover qualifying expenses while not taking away from a person’s illegibility for Medicaid. The qualifying expense categories are aid care, medical, transportation, and housing. Other questions about ABLE Accounts have also risen; for example, what amount can one put into an ABLE account per year. Once ABLE Accounts are established by the end of 2015, individuals can develop ABLE Accounts and put up to $14,000 a year into the account. It is essential to know these accounts are not a save all but should be used to supplement other options such as disability trust.

The hope that ABLE Accounts can provide is excellent; no longer will persons with disabilities have to be confined to a financial second class. The regulations have not been written and are only in the works; one will have to wait and see how the act is translated from paper to action. One can only be optimistic and hope that the action will speak as loud as the legislation does.

 

Until next time, thanks for reading, fear nothing and regret less

"Is it Accessible?": Bubba Raceway Park

 

I recently moved back to the south after many years away. Not much has changed; people are still quiet, welcoming, the BBQ is always right, and dirt track racing is still the thing to do on a Friday night. Or at least what all the brochures say.  I was never a fan of dirt tracking racing when I was a kid, but I decided to give it a go since I moved back. One of the "best dirt track racing in the south" is in Ocala, Florida, at Bubba Raceway Park. When I first heard the name, I was skeptical. But then, I did more research. It's a racetrack sponsored and owned by a radio show host known as "Bubba the Love Sponge" although the name may sound different, and his show may not be your typical morning show, the racetrack is what it is advertised to be. Every Friday night beginning in March until the winter months, it is a premier dirt track course and family event.

The first time I went, I enjoyed the action-packed show while sitting near the gate while getting covered in mud. I wasn't concerned with accessibility; I was more concerned with drinking beer and enjoying the show. And I must say, I accomplished that goal quickly. I have since decided to make Bubba Raceway Park a weekly to by weekly tradition, depending on funds. Although I had fun, this blog is not necessarily meant to detail all my exploits. It is about accessibility. That brings me to my second trip to Bubba Raceway Park.

On April 17, I attended Monster Jam at Bubba Raceway Park. While I was at Monster Jam to enjoy the show, I also was there to examine accessibility. The Monster Jam show was great; it was conducted in a team-by-team format, which provided for an evening of mud flying fun. The accessibility of the park and event, however, was not so great.

For anyone who read my last blog post, they will know that 2015 marks 25 years since the ADA. The Bubba Raceway Park did not get the memo. I am aware that this is an outdoor park, so some of their requirements may be less strict, but I must say I was appalled by the venue's lack of accessibility. The trouble started when I went to park my vehicle with my friend. Nowhere on the property is there semi-hard ground to let ramps down in. For anyone who doesn't know, wheelchairs tend to get stuck very quickly in soft ground. Eventually, I could get unstuck and make my way to the tiny paved area that consisted of the line to get in. Here I found another problem. The gate that they expected me to pass through was too narrow for my wheelchair. On this one, though, I will give them credit. They allowed me to enter the seating area differently.

Earlier, I said they allowed me to enter the seating area; I very loosely use it when I display seating area. Don't get me wrong; there were bleachers for everyone else, but no designated handicap seating area. I was in my spot from the week before, sitting by some broken benches on a hill, close to the gate, which I didn't mind.  I minded the lack of control, the venue, and event staff over the area. One other handicap gentleman and I were sitting at the bottom of these broken benches with about 30-50 other people.  No big deal, right? Wrong. What I failed to mention about these people was that they were kids under the ages of 10. For those of you doing the math at home, kids under the age of 10 with no seating area designated equals kids running wherever they want to—included in the front of people in wheelchairs who can't see.

I could handle the minor inconveniences, though; I let it slide and tried to enjoy the show. What I could not let slide was the restroom facility arrangement. I don't know if it's just me not going to a lot of racing events before, or me expecting too much or racetracks not expecting handicap people, but all I could say about the restroom was that it left much more to be desired than one would like to begin with. It was not accessible for wheelchairs to enter it. There was a 3-foot step from the ground to the restroom, go-go gadget wheelchair? Oh wait, I don't have one of the fancy ones. Second and most upsetting was there answer to the non-accessible bathroom when I told the staff that I needed to use the restroom and couldn't get into it, they said something to the effect of "Block it off and go in front of the restroom by the sink and use your urinal there." So wait, I'm supposed to block off the restroom and prevent a line of drunken ass men from going to the bathroom and try to pee all at the same time? That doesn't sound like a formula for success or accessibility.

 

While I am stubborn and probably keep going to Bubba Raceway Park, I do not recommend anyone in a wheelchair going without a companion who is willing to go above and beyond to make sure you both have a good time. To answer whether this venue is accessible, the answer is no, but hopefully, if I keep going and complain enough, it soon will be.

A Fresh Start

It has been nearly eight months since there has been anything new posted on this blog. A lot has happened in eight months hiatus. I have finished my master's degree program in Teacher Education. However, due to the trials and struggles that have occurred during that process, which can be read about in earlier entries, my focus has drifted away from teaching and advocacy for persons with disabilities.

Most of this blog has been dedicated to advocacy and discussing various issues that people with disabilities encounter. However, the point of view of the author, me, has changed. A lot of the writing in earlier entries came in a time of my life when I was unhappy with the circumstances faced with. I have since re-evaluated The Voiceless Minority. There was a time where I thought about abandoning the project altogether if I'm honest. However, I decided I would resurrect the blog at this time and take it in a slightly new direction. It will still address social issues, but I will also address practical problems.

One of our more critical topics that will be discussed is, "Is it Accessible?" In this series, I will break down all the places I've traveled to or have been. After doing so, I will examine specific criteria to determine whether areas are accessible by paper standards vs. accessible. Apart from the "Is it Accessible?" series, the blog will focus on current events and real-world issues that may or may not be related to disability. This shift in focus is not meant to take away from the foundation of this blog; rather, it is meant to demonstrate that people with disabilities have a highly engaged mind. To undertake this part of the blog, I may, at certain times, ask for issues to investigate from you, the readers. You can find my email to the right of any page, three-fourths of the way down the page, under the links that say, "Contact Me."



Thank you for reading, and I fear nothing and regret less.

Goodbye to the Funny Man

 I suffer many trials and tribulations like everyone else. My physical disability is an apparent battle that I struggle with. However, other battles aren't quite as obvious. Recently, the well-known actor Robin Williams took his own life because he battled depression. This is a disease, which I battle as well. The stigma of depression is overwhelming sometimes. If one finds out you suffer from depression, they look at you negatively. There are more negative consequences of depression in my estimation than with being obese or having afflictions.

            With Robin Williams's death, I was set back. It shocked me that someone with such a promise and an appreciation for humor like myself, could not fight his demons anymore. It got me thinking, and to be honest, it got me questioning myself. I often wonder if I am strong enough to battle this internal struggle that I deal with every day. Hopefully, with Mr. Williams's death, people begin to realize that depression isn't something we can take lightly anymore. Mental health, in general, in this country, is not given the attention it deserves. Hopefully, with this tragedy, more attention will be paid to depression, immensely, and mental health in general.   If something does not change soon with the way society views mental health, tragedy will continue to occur.

            Those close to me know that I suffer from depression, but only those who also suffer from depression can understand what it is like every day. Some days, the pain is so great it is like nothing you have ever felt before. There are other days that you are happier than you have ever been to. It is a delicate balance between the two; what works for me does not necessarily for everyone. The tricky part of depression is that it is unique to every individual. Its cure is not found in a medical book. Its symptoms are not obvious, and it is not often talked about. Some of you who read this may wonder why I am disclosing that I suffer from this disease. The answer is quite simple. The stigma of depression needs to be broken. More people need to talk about what is going on inside their heads rather than just pretending like it's not there. If we do not change our view of depression, what happened to Mr. Williams will happen again. Mr. Robin Williams, you will forever be missed, and you were one of my favorite people.

 

The AWWW Moment

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 4^th 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.

---

 [jh1]

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. 

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