The Art of The Casual Lie

Your friendly neighborhood super advocate is back! This time I have a question. Have we reached a point where it is okay to tell a “casual lie” rather than the truth?

You may ask what made you pose the above question. The answer is sad but simple. During a recent follow-up appointment with my pain management doctor, I began talking to his nurse. I have been to the office several times in the last few months because my pain pump needed to be replaced. On this particular occasion, I found it easy to talk with the attending nurse for that day. For privacy purposes, I will not give her name here. 

Throughout my appointment, we chatted easily. She asked me general questions about my education and other topics, and I did the same. As the appointment progressed, it eventually came out that I was a disability blogger. I told her about this blog and mentioned that we had a Facebook page. She seemed genuinely interested, so I invited her to like the page and add me on Facebook. Truth be told, I was not expecting her to do so, however, she immediately responded with the following “Sure I will add you. My name is (blank).” She then preceded to give me her name. After doing so, she said, “Now I post some crazy Crap, so don’t be offended.” I chuckled because I also post crazy stuff as well. The appointment concluded and I went home.

Later that evening, I was on Facebook checking my various accounts and I decided to look her up. While there are numerous accounts with the name she gave me, after looking for quite a while I was unable to find her. Although I expected this from the beginning, the casual way that she

blew me off with what I am sure she thought was a harmless lie got me thinking.

In America today we have become a culture that is dominated by the casual lie. We no longer dare to be honest. If the young lady had no intention of adding me on social media, I would’ve been okay with that. All she would’ve had to do was say “something to the effect of” I would love to, but it is against office policy”.  Instead, to not hurt my feelings she came across as patronizing.

I believe this not only highlights a societal issue that needs to be addressed, but on a deeper level, it brings up the issue of how people view individuals with disabilities. For the longest time the general population has seen those with disabilities as fragile. Several years ago, I wrote a blog entitled” The Protection Complex.” That blog addressed a similar issue that is still relevant today. I believe society views us as fragile because they do not see us as equals whether it’s an individual’s family unit, boss, or during social interactions. People with disabilities are often coddled and are not forced to face the realities of life. You may think I’m reaching, but I believe this young lady blew me off because she thought one of two things. That I was just hitting on her like everyone else does, or, as I believe, she probably saw me as fragile and felt that I couldn’t take the truth. 

Why has the truth become such a toxic thing in America today and especially with people with disabilities? I think the answer is quite simple. Oftentimes, the truth is raw and may hurt, however, if we continue ignoring the truth, we will become a softer and more anxious society. As a final thought, it may be good to try and soften the blow once in a while but by doing so we may do more harm than good.

Anyway, let me step/roll off my soap box for the evening. Hope you guys have enjoyed the read. I look forward to a vibrant discussion about any or all of the issues I brought up in this post. 

Until Next Time,

Your Friendly Neighborhood Super Advocate,

Jay

Disability Is A Mindset Not A Diagnosis

Your friendly neighborhood super advocate is back! Since I last posted a lot of things have happened in terms of disability related issues and content. This post is the first of several posts to come. They will discuss a wide variety of topics including dating and relationships as well as finances and the low expectations society still has for people with disabilities. 

Today’s post will highlight a recent encounter that I had at Wal-Mart. The encounter reinforces the idea that there is still a narrow view of disability in society. Let me set the scene.  

As I often do, I was shopping at my local Wal-Mart a couple weeks ago. Most of the time I go in to the store with my caregiver or I pick up the groceries I have preordered. On this day, I did not go in, instead I decided since I only had a few things to pick up I would have my caregiver run in for me. As most of you know, I currently live in Florida. The weather in Florida often fluctuates between warm and extremely hot in the spring and summer. Rather than waste gas and run the car, my aide and I decided that she would leave the windows down for me. Wal-Mart must have been particularly crowded on this day because it took longer than usual.

While I was listening to music and waiting for my caregiver, an African American gentleman stopped one of the Wal Mart employees who was gathering carts in the parking lot and loudly made the following comment while pointing at my van. “Look at that autistic kid. I don’t think he knows they left him in the car. This is abuse. You should call the cops. It is too f-ing hot”. As this interaction was taking place my first thought was to react with anger. I actually said out loud I do not have fucking autism”. I then thought to myself why are you getting angry? This is typical. After a few seconds I realized if the guy came over, I could use his comment as a teaching moment. Eventually he did approach the vehicle, and proceeded to ask me in a patronizing way if I was okay. Before I responded I took a few seconds to compose myself. 

After reassuring the gentleman that I indeed was okay, I proceeded to inform him that I did not have autism and not all people with disabilities are autistic. He must have been taken aback by my response because all he said was “Oh, glad you are okay. Have a good day”. Once my caregiver got back in the car, I told her the story and we immediately started laughing about it. It was not until later when I told my girlfriend who has the same disability that I do, that she suggested I write this blog. The reason I took a couple weeks to write this blog was because I was having trouble figuring out whether there was a larger lesson that I could expand upon because of this encounter. It was not until last Sunday that the lesson became clear. 

I had not thought about the ignorant comment for a few weeks, and it did not enter my mind until a different caregiver of mine was having a conversation with his friends, and they were surprised that people with disabilities could go bowling. The two incidents made me realize that there is a larger concept that most of the able-bodied community does not yet grasp.

Even though we are in the third decade of the 21st Century and a lot of improvement has been made in the lives of people with disabilities, there is still a level of ignorance and lack of awareness when it comes to disability throughout mainstream society. People either patronize people with disabilities or assume certain things about people with disabilities instead of getting to know us as individuals. If we are ever going to change this, people with disabilities need to be more assertive and this may be controversial but stop feeding into the idea that the majority of society holds.  Most of the able-bodied community assumes that disability equals low expectations. The disabled community further perpetuates this idea when they don’t have high expectations for themselves or each other. 

The statements made in this blog reflect my own beliefs and do not reflect the beliefs of any other individual with a disability. I am not sure how the disabled community will react to this blog as a whole, but it is my hope that all who read this blog will be left with something to think about. People should be judged by what they do, and the impact they make on the world. It is up to all of us to not only be good people but not give others a reason to look down upon us regardless of whether or not we have a disability.

I know this post is longer than usual but I believe it was necessary and just the right length. 

‘Til next time, your friendly neighborhood super advocate,

Jay 

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

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!”