Thirty Years Gone but Not Forgotten; A Letter to My Pop-Pop, My First Best Friend

This Christmas will mark thirty years since the passing of my mom’s dad, or the person I like to call my Pop-Pop. To be quite honest I've been lost in my thoughts for a few days now.

Late last year I was presented with the opportunity to become a Florida SAND Fellow. The Florida SAND fellowship has allowed me not only to continue my writing which I have been neglecting for the last couple of years but equally as important, it has allowed me to strengthen my advocacy skills. There have been ups and downs throughout my fellowship but as they say, things happen when they are supposed to. As a result of my fellowship, I finally found the best friend I have been searching for my entire life. Nearly ten months ago on a dare from my caregiver, I approached my now girlfriend Samantha Lebron and started a conversation. I did not know it at the time, but God put me right where I needed to be. 

For the longest time, I held a belief that I could never date someone in a wheelchair because of the childish assumption that our physical limitations would get in the way. Boy was I wrong! I now have not only found someone who I can bounce ideas off of, but my little blue-haired alien is just as quirky and nerdy as me. I never thought my dreams of traveling the world, starting a family, or exploring what it means to have a disability on a deep level would be shared by anyone. Recently during a conversation with my dad, my feelings were affirmed when he said something to the effect that he and my mom have seen a great deal of maturity and growth in me since I started dating Samantha. He also shared that Samantha was God’s answer to his prayers. Before Samantha, he was unsure if I would ever find a true best friend not simply because of my disability but more so because of my lack of self-confidence and maturity. As much as I argue and fight with your dad, you couldn’t be more right, you hit the nail on the head. Thank you for your kind words and vote of confidence; it means the world to me. 

The concerns that my dad brought up in our conversation about my newfound maturity have bothered me for the longest time. I too never thought I would experience some of the things I have. Along with this thought, I have also often questioned whether or not I am a person that my grandfather would be proud of. I looked up to him like no one else. He was my first hero. He never saw my disability as something that made me different. He always treated me as if I was his best friend. I feel that on some level I have let him down. I have not always been the person that I am today. I can say that until recently I did not like who I was. I was one of the most negative people I knew, on the inside anyway. I have always been good at putting on a brave face and happy demeanor for my friends and family, but I have never been proud of who I am. All that changed quite suddenly. 

As I was going for a roll the other day, it hit me for the first time that this year is the 30th anniversary of my grandfather’s death. As I started to cry and feel sorry for myself, a negative thought crossed my mind. I felt as if evil forces in the universe were reinforcing the idea that I indeed was a disappointment to him. As if in response to my thoughts, it suddenly started to lightly rain. Immediately I stopped crying and a broad smile came across my face. I realized that the rain was my grandfather sending his love from heaven to reassure me that I am indeed on the right path and not a disappointment after all. 

Thank you, Pop-Pop, you have always been there when I needed you even if I didn’t know it. Although you are not here with me you will forever remain in my heart. I love and miss you every day. 

Jay

Remembering Judy Heumann: How Her Life and Legacy Transformed the Disability Community into What It Is Today.

Disability pioneer Judy Heumann passed away this past weekend. Since my blog focuses on disability related issues I would be doing you my readers a great disservice if I did not write a piece on the late Judy Heumann, without whom this blog may not even exist. 

Judith ”Judy” Heumann was born on December 18th 1947 in Philadelphia and raised in Brooklyn. She contracted Polio at the age of two. Fortunately for her, her parents did not subscribe to the popular theory on people with disabilities at the time. When the doctors suggested she be institutionalized because there was “no way she will ever walk” her parents chose not to listen. 

Miss Heumann began her advocacy work in the 70’s when she fought the New York board of education over the right to teach in a classroom. She would eventually win the battle and become the first teacher with a disability in New York. Her advocacy efforts would soon reach far beyond New York. 

In 1975 Ed Roberts asked Judy to move to California and join in the Center for Independent Living Movement. Miss Heumann and Mr. Roberts would eventually transform what they had built in California into a national movement. Although there is no denying that Judy Heumann’s influence on the Center for Independent Living Movement is tremendous, she would go on to make an even more significant impact on the lives of people with disabilities. She would eventually go on to help shape the land mark legislation that would become The Americans with Disabilities Act. (1990) This law is the basis for the rights and freedoms that people with disabilities have today. 

As a result of her work on the ADA she would go on to serve in the Clinton administration from 1993 to 2001. She served as the assistant advisor in the office of Special Education and Rehabilitation, from there she would go on to play a role in the international disability rights movement and she would continue advocating until her untimely death. 

Although Judy Heumann’s accomplishments are great and would look awesome on anyone’s resume her legacy stretches far beyond just those accomplishments. She has had a great impact on me personally. It is because I learned about Judy’s advocacy efforts from an early age that I am the person I am today. Like Judy’s family, my parents never let me use my disability as a crutch or an excuse. When I was growing up, I had chores to do and they expected me to contribute like everyone else. I also can relate to Miss Heumann’s story because I too had dreams of being a teacher, but unlike Miss Heumann I let society’s perception of what people with disabilities are capable of influence my decision to stop my journey to become a teacher. However, they say things happen for a reason. Although I am not your typical “teacher” through my advocacy work I have found that there is more than one way to teach and not all teaching is done in a classroom. Life has a way of randomly presenting us with teachable moments. 

In closing, Judy Heumann will always be remembered for being a staunch disability advocate and she will always be known as the “mother of the disability rights movement.” As advocates, we have a responsibility to carry on the work of those who came before us. The fight for disability rights is not just about people with disabilities but it is also about the need for greater change within society for all. 

Until next time, 

Jay

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)

"Kasey to The Rescue" Gives A Well Needed Perspective on Disabilities

I was turned onto to a book entitled “Kasey to The Rescue” by Ellen Rogers by my aunt Eileen this past weekend. This book was immediately captivating it dealt with a subject matter close to my heart, challenges related to living with a disability. The main character was a 22-year-old named Ned who got into a car accident at the beginning of the book. Not only does the author who happens to be his mother do a great job of detailing what it is like dealing with a Spinal Cord Injury from the perspective of a loved one she also introduced this reader to a new form of "assistive technology", that of a helper monkey. Immediately I was intrigued by the concept of the story and wanted to do more research on the helper monkey concept as it could relate to my physical needs. While I have not yet completed my research, I am definitely hopeful about what I have found. This book also holds a special place in my heart because it was turned into a movie which I am going to see later tonight. A review of the movie will follow. The overall message of the story is one of hope and perseverance. It comes at a perfect time for me. Those who know me may not be aware but lately I have been less than positive about my circumstance even with a welcome addition of a girlfriend I find it hard to stay positive. The message the author conveys has me rethinking the way I look at life. I would strongly recommend this book to anyone who reads memoirs and anyone who wants to learn what it is like to have a disability.

Getting Back Out There: Carnival of Crue

It has been several weeks since my last post in the Getting Back Out There series. It would be an understatement that a lot has changed. I am in a transition period with my aid care and on top of that, I have been given more responsibilities at FSA Central. That being said I figured now would be perfect to review a show I went to a couple of weeks ago. On July 16th I attended the Carnival of Crue show at the Reilly Arts Center what follows is a review of the show and the venue itself in terms of accessibility. 

From the beginning, I could tell this night was going to be a particularly enjoyable evening. I once again found myself at the Reilly Arts Center which is a quaint medium-sized venue. For those of you who have been keeping up with my blog, you may remember I reviewed the Lynard Skynard cover band "Nothin' Fancy." That event also took place at the Reilly Arts Center. As with Nothin' Fancy, the Carnival of Crue show was part of a local classic rock radio station's summer concert series. "WindFM Rocks The Reilly is a series that brings elite classic rock cover bands to the Ocala area. Carnival of Crue lived up to my expectations. Unlike the Lynard Skynard tribute show, this time I was with my girlfriend Samantha. It was not only nice to experience this cover band together but it was also enjoyable because it was her first concert. (Unless you count a concert she went to while in the 8th grade) She doesn't like to count that one so don't tell her I told you lol. 

Anyway back to the show at hand. Before getting into the heart of the review I must provide this disclaimer my judgments and/or opinions of the cover band come with no first-hand experience of the original group being covered. I was not lucky enough to see Motley Crue in their heyday so forgive me for what may amount to an insult to every Motley Crue fan out there, but it is my opinion that the cover band was amazing. From the beginning of the night, Carnival of Crue (CoC) started the show with amazing energy which carried through both hour-long sets that they did. Although I was not around in their heyday the show allowed me to experience the development of the band as they played all of their hits from each album. My favorite had to be "Smokin' In The Boys' Room. If I had to rate this cover band I would give them 8/10 however the music is not the only thing that is of concern if you are a person with a disability. 

Seeing as this blog is written by and read by people within the disability community it is crucial that any prospective visitor to the Reilly Arts Center be well informed about any obstacles seen or unforeseen they may encounter. When going out on the town for the evening there are several key factors that people with disabilities need to factor in. In my last review of the Reilly Arts Center, I mentioned there wasn't a "bad" seat in the house. All seats have clear and uninterrupted sight lines to the stage. This in and of itself solves an accessibility problem before one arises. Often, people with disabilities are relegated to the back or sides of most venues, this can create a literal rear view problem. If a venue is too crowded with the seats packed too closely together people with disabilities will end up staring at the backside of the people in front of them. Another often overlooked problem one may encounter is sound sensitivity. My girlfriend has a hearing disorder called Hyperacusis which makes sounds seem louder than they actually are. During the concert, she wore noise reduction earplugs and noise-canceling headphones together. Even though she was wearing both earplugs and headphones she was still able to hear clearly and enjoy the concert. Along with the accessibility of the performance space, there are other things to consider when planning a night out.

Other barriers that affect people with disabilities and their ability to live a "normal" social life include the accessibility of the venue's facilities or something as simple as having a clearly defined curb-cut and everything in between. Although I did not have major issues with external accessibility, I will say I encountered a slight issue with the restrooms. In order for me to use the restroom, I have to bring a caregiver with me. Usually, this is not a problem but it can turn into one if the stalls are not big enough for two people. Without going into graphic detail I will mention the stalls were not big enough for two people. This meant I needed to remain halfway out of the stall while taking care of my personal needs. Not only is this unfair but it can lead to some very significant problems ie the crime of indecent exposure. That being said here is a note to the Reilly Arts Center management next time you go to make renovations to your facilities please if at all possible make the restroom stalls wider.

Overall I would give The Reily Arts Center a B+ in accessibility. Although the Classic Rock series is over for the summer I can't wait till the next time I take in a show at The Reily. Ta ta for now. Your trusted source for all things disability-related.

Jason H.