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 

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

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.

The Move

       It has almost been a year since The Voiceless Minority started. At that time, we have published nearly 50 blogs here on the blogger website. 
       As the New Year begins for The Voiceless Minority, it is time that we make a move. We are moving our web address and hosting over to word press. The new address will be: http://thevoicelessminority.wordpress.com/
       Nothing about the blog will change content-wise; the only thing that will change is the look and the usability of the blog. There will be an archive section for those of you who haven’t got a chance to read all the old blogs on the blogger website. There will also be a contact page and a discussion page so that those in the community or those interested can interact with one another. Please post resources or questions you may have! 
       Finally, we hope that this move will allow the Voiceless Minority to connect with those who read it easily. Apart from my traditional blog posts with our new host, we will also post things and videos. We will experiment with video podcasts with me, Jason Hahr, so you get to know the writer behind the Voiceless Minority. 
       I want to say a quick thank you to those who helped me at blogger and those who helped me design the blogger webpage. I am grateful for your year of service and help, and I hope that the next year will be just as successful as the previous one. Thanks! -Jay