An Introduction To The Concept of Self-Determination and How It Can Be Applied In Your Life

Thank you for your overwhelming support of yesterday's blog about Braille Legos. Today's post will be a little bit different. Near the end of August, I was lucky enough to be a part of a team that gave a presentation on what is known as self-determination. For those of you who are reading this but were unable to attend the presentation I thought I would write a blog using easy-to-understand language about the concept.

Introduction:

In the journey towards creating an inclusive society, the Robert Wood Johnson Foundation’s principles of self-determination serve as strong examples of empowerment. These principles emphasize the significance of autonomy, choice, and personal growth for individuals with disabilities. Let’s delve into the essence of self-determination and explore its profound impact on the lives of people with disabilities.

Understanding Self-Determination: 

At its core, self-determination encompasses the idea that individuals with disabilities have the right to make choices about their own lives and actively participate in decisions that affect them. This concept champions the belief that everyone, regardless of ability, possesses the innate capability to lead a fulfilling life and pursue their aspirations.

Principle 1: Freedom to Make Choices:

The first principle underscores the freedom we have to make choices according to our preferences, interests, and values. This freedom extends beyond trivial decisions to encompass major life choices, such as education, career, relationships, and living arrangements. Recognizing and respecting these choices helps foster a sense of ownership over one’s life journey.

Principle 2: Authority Over Supports:

Having authority over the types of support and assistance we receive is pivotal for us. This principle acknowledges that each person’s needs and goals are unique, and thus, we should have the power to determine the kind of support that aligns with our aspirations. This approach shifts the focus from a “one size fits all” approach to a personalized, tailored support system. 

Principle 3: Control Over Resources:

Financial independence and control over resources play a significant role in self-determination. Individuals with disabilities should have access to information about available resources and the autonomy to manage their finances. This empowerment helps us plan for our futures and make informed decisions that positively impact our lives.

Principle 4: Opportunities to Learn and Grow:

Continuous learning and personal growth are fundamental to leading a self-determined life. This principle emphasizes providing individuals with disabilities equal opportunities for education, skill development, and vocational training. These avenues not only enhance our abilities but also amplify our voices and allow us to gain confidence and realize our full potential.

Principle 5: Participate in Community Life:

Inclusion within the community is a cornerstone of self-determination. Individuals with disabilities should have the chance to actively engage in social, recreational, and cultural activities, just like everyone else. This principle dismantles barriers and encourages the forging of meaningful connections to lead a rich and fulfilling life. It is only by self-growth and by developing who you are as a person, whether it is in the disability community or otherwise, that you can move onto the final principle which is all about giving back.

Principle 6: The Ability to Give Back to the Disability Community and Advocate for the Rights of People with Disabilities:

In my presentation, I only use 5 principles, but the sixth principle is otherwise known as confirmation. Once you are living the other five principles to the best of your ability it is your responsibility to give back and complete the circle of learning. As people with disabilities, we have a responsibility to learn about our rights and once we have done so, it is our job to pass that knowledge along to future generations of advocates. This could be done in a variety of ways through presentations like the one I gave at the conference, through blogs like this one, or even taking advantage of the times and posting videos on social media.

In conclusion, the principles discussed above if applied correctly, will help us on the path to personal empowerment. Once we empower ourselves and gain confidence in ourselves, we can push for societal change to break down barriers, challenge systematic and societal biases as well and create an environment no matter if you have a disability or not where your dreams and aspirations are honored and supported. If this occurs even in the long term, we will have built a more inclusive and compassionate society.

Thank you for your overwhelming support of this blog. I hope you have an enjoyable weekend. Now I know Monday is Labor Day but advocacy doesn't take holidays therefore neither does The Voiceless Minority. Come back on Monday to not only support the workers of America but start the back-to-school season with a blog that raises an important but not often asked question. "When is the right time to start teaching my kids about disabilities?"

Your Friendly Neighborhood Super Advocate, 
Jay

Florida SAND Fellowship Year One: A Review of How My Advocacy Has Benefited From My Fellowship

Hello again everyone. I hope everyone enjoyed yesterday’s blog on adaptive cooking and cookware. As my fellowship is coming to the end of the contract for my first year tomorrow, I felt it would be appropriate to give a nod to not only Florida SAND but my colleagues and the staff who trained us throughout this past year to thank them for helping my passion for advocacy grow. 

I came into this fellowship at a weird time in my life. Before the fellowship, I had worked for Florida SAND as a per diem writer for their blog FSA Central. While this work kept the flame for disability advocacy alive and on life support, when I was presented with the opportunity to be a fellow, I immediately jumped at it. Thank you to Kelli Munn for the opportunity.  I would not be where I am today without your faith in me. However, my fellowship wasn’t as smooth of a journey as I had hoped. 

About a month into the fellowship, I began to take it for granted. I had an ego bigger than the state of Florida and I thought that I knew everything there was to know about self-advocacy; boy was I wrong! I quickly learned that there was more to this fellowship than just writing articles about people with disabilities. Thanks to the fellowship I would develop event planning skills and meet my best friend, although I did not know it at the time.  We spent the first few months of the fellowship planning a conference where we would teach a concept that I have spoken about before on this blog, “The Route To Self Determination”. At the time I did not realize how this conference would change my life forever. Along with my colleagues, Laura Lee-Minutello and Samantha Lebron we had to give a full-day presentation on the concepts of Route. It was both an eye-opening experience as well as a learning opportunity and as I’ve said before, it was where I dared to hit Samantha with the following cheesy line that would change my life forever.  

Hey, “would you be my scribe for the weekend?”. I don’t know why the hell she said yes but she did. I will not go into further detail about how we have built a relationship in this blog as it is not relevant to my main point. After that weekend I started to see that my passion for disability advocacy was not as strong as others were. Over the next six or seven months it would decline and eventually, in an unforeseen way, it would reach an all-time low. The fellowship quickly became something I took for granted. 

I was given so many opportunities to better the lives of other self-advocates but unfortunately, I did not take advantage of them. Granted, I spent some time dealing with health issues but I did not use my hospital stay to re-energize, instead, I would use it in a negative way and sadly become complacent. However, that all changed a few weeks ago. 

About four months ago we started planning this year’s conference where we would give a condensed version of the presentation we had given the year before. I tried to use this to remotivate myself but it wasn’t until I attended the conference and heard its keynote speaker Matthew Walzer that my attitude changed in a positive direction. Without retelling Matthew’s story, as I have mentioned in previous blogs, I will say that his speech changed my life and my overall outlook on not only my fellowship but my life in general. 

I now understand how things happen for a reason but at the same time, we cannot use negative events in our lives as excuses or crutches to explain away our laziness or lack of effort. Thanks to the fellowship and the speech I heard at the second conference, it became a part of my advocacy work and my enthusiasm has intensified one thousand percent. I now post on The Voiceless Minority anywhere from four to five times a week. This is significant because excluding the first two years in which I started the blog, I only posted on it sporadically. 

As a final thought, just because you start to feel overwhelmed or negative about a particular job or situation you are in, remember that you are the only one who can change the way you feel. Recently I wrote a blog on how attitude is altitude, and it is this principle that is most appropriate to end this blog. In other words, just because there was a period in time where I had negative feelings toward the program, this does not mean that I could not have chosen to deal with them positively.  Negativity is only a feeling; it is only as powerful as we allow it to be. Instead of letting the quality of my work show how I was feeling at the time, I believe God was testing me and unfortunately, I did not pass his test. But you learn from your mistakes and learned I have. 

Whatever you are facing, there is always a way to put a positive spin on it so that you come out of a situation better than before you encountered it. This writer’s humble opinion. Until tomorrow, stay strong. 

Jay

One Self-Advocate’s Journey To Redefine the Shoe Industry for People With Disabilities Reinforces a Point That My Dad Has Been Preaching for Years

In Tuesday’s blog post, I talked about a speech I heard this past weekend from a young man by the name of Matthew Walzer. His speech came at a perfect time in my life. As I said in the blog Tuesday, until this past weekend I had been lost and in a sort of never-ending fog. Since Matthew’s story impacted me so much, I thought I would share it and its similarity to a point my dad has been trying to get both me and my sister to appreciate for years. By the end of this piece, you will not only understand the great wisdom of my dad but also you will hopefully appreciate the tenacity Matthew showed in his effort to redefine sneakers for people with disabilities. In short, by the end of this piece, you will understand why I believe in the saying, “Attitude is altitude”. 

Every good story must start with a problem that the protagonist must face. Only this time, Matthew Walzer wasn’t writing fiction. Matthew was born with Cerebral Palsy. While some with Cerebral Palsy are wheelchair bound like myself, Matthew can mostly dress himself. The only problem is up until he decided to change it at the age of 16, he had a problem tying his shoes. Matthew would have to ask his parents to help finish dressing him. Matthew was not satisfied with this. He had dreams of going to college but was worried about being embarrassed, and who wouldn’t be embarrassed, by having their parents tie their shoes in college. What was Matthew to do? 

Being proactive and a forward-thinking individual, Matthew wrote a letter to one of the largest shoemakers in the world. He wrote to Nike explaining his dilemma and after years of development, Nike would come out with a slip-on sneaker which they called FlyEase. Matthew may not have been aware of how his letter would change not only his life but the disability community as a whole, however, his impact is much more than just a shoe. Matthew displays a drive and tenacity that most people wish they had. 

When I heard Matthew tell his story this past weekend at the Florida SAND conference, I was immediately struck by two things. The first thought was holy shit this kid has balls. The second thought was I used to be like that. What the hell happened to that Jason? I used to live by the saying “Fear nothing, Regret less” but compared to Matthew I was falling short. As I said in Tuesday’s blog, Matthew has inspired me to change that, but he has also done what my dad has tried to do for what seems like a lifetime. 

Many years ago my dad told me to not let my disability hold me back from doing anything. At the time, he did not use the phrase attitude is altitude but clearly, that is what he meant. Matthew and my dad are both wise beyond their years. They both understand that our lives are ours to live. They only will be as good or as bad as we let them be. I know I am posting this on a blog related to disability, but Matthew’s point goes far beyond having a disability. Yes, he was born with a disability but besides the fact that he uses crutches to get around you wouldn’t know it. 

The attitude that Matthew and my dad and for the most part, I have, is not very common anymore. But given the state of the world in some people’s opinion, that might make sense. I argue that the negativity and pessimism that we see in a large part of society today regardless of disability, race, gender, or economic status, only produces negative outcomes. If we as a society think negatively, we will not be satisfied with how things turn out. 

In closing, perhaps the epidemic of depression and suicide as well as a feeling of not having a social identity can be simply attributed to the way one looks at life. But I could be wrong. After all, I’m just a 37-year-old Quad who has Cerebral Palsy. However, I believe that what I lack in the physical department, I make up for in common sense. Anyway, just food for thought.

Jay

Florida SAND 2023 REUNITED CONFERENCE RE-ENERGIZES My passion and PROVIDES much needed SPARK For Advocacy

They say things happen for a reason. They also say for those of us who are religious that God has a way of providing exactly what you need when you need it, even if you don’t know you need it. I am living proof that this statement is true. In the following piece, you will learn that one event, no matter how small or big, has the power to change you if you allow God to implement his plan in your life.

For those of my readers who don't know, I am beginning the second year of my fellowship with an organization known as Florida Self-Advocates Network’D (FLORIDA SAND). They are a nonprofit, organization made up of 15 self-advocacy groups throughout the state. The organization aims to amplify the voices of individuals with Intellectual and Developmental Disabilities (IDD) on a local, state, and federal level.  According to their website, their mission is… 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, legislative platforms, networking with local businesses 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. 

As a part of my fellowship, I am contractually obligated to plan conferences. As well as self-advocacy training, I am also required to develop an educational curriculum that focuses on self-advocacy. About six months into my fellowship, I started to develop negative feelings toward the whole program. I started treating it like a job that I could not wait to leave, instead of a job I was passionate about. I began to get lazy, purposely waiting until the last minute to complete assignments, however, that all changed after a conversation with one of my best friends who happens to be my sister. 

One night a couple of weeks ago I called my sister intending to just talk about her upcoming baby shower. Yes, I will be an uncle on or before October 12th and I am so excited to get to spend time with my first niece and show her that dinosaurs still exist, lol. Now back to what I was saying. My mom planned a baby shower for my sister during the weekend of August 18th through the 20th. She said she was extremely excited however, soon the conversation turned to me because during the same weekend that she was to have her baby shower, I was to attend the Florida SAND Reunited Conference. As a part of my fellowship, I had to speak at the conference with my colleagues. We were required to give a presentation on what is known as Route to Self-Determination. In short, the presentation centered around the concept of being in control of your life regardless of whether you have a disability or not. When my sister asked me if I was excited to give the presentation and have our dad see me at work, I responded with something like I feel like a fraud… I can’t wait for it to be over. Before she responded to my comment, I was in my head and I believed that I was not living the concept I was supposed to teach. She explained to me that although I am not living the concept 100 percent right now, I am missing the point. Self-determination is about having the ability to live with a disability and also to live the life you want with the proper supports. I was not seeing it this way and instead harping on the part of the concept regarding living life the way you want. I was leaving out a crucial part of the concept ie; the first principle of self-determination having the supports you need and making sure they are the way you want them to be. 

As a result of this reality check, I went into the conference with a positive attitude and I believe this is why God put me at that conference, he knew I was looking for direction in my life and he also knew that I already had it, I just wasn’t paying attention to the signs. Long-time readers of this blog will remember that I have another blog entitled “The Modern Day Moderate”. I have also mentioned that I was a founding member of an organization known as “Access The Vote” which was started by Disability Rights Florida.  Sadly, because of my negative attitude as of late, I stepped away from the organization, however, God figuratively smacked me in the face, and told me I needed to get back involved with the organization when he orchestrated a conversation between me and my friend Laura-Lee Minutello who works at Disability Rights Florida as a part of Access The Vote. She presented me with an opportunity to rejoin the organization and I could not pass it up. I will be attending their upcoming voting summit on Wednesday, September 13th.

Along with the conversation with Laura, the presentation I gave was extremely well received. I am so proud of my fellow fellows for all the hard work and preparation we put into this conference. Thank you for allowing me to be a small part of the team. Even though we experienced ups and downs along the way I think we were exactly the right group of people to give said presentation. I have learned a lot from every one of you. As an added plus I got to spend the weekend and work with my awesome girlfriend Sam. I could not have asked for a better weekend. I also would like to thank Rick Patterson for his tremendous hard work and understanding while not only taking care of me but my dad as well. Thanks, dude, even though we butt heads occasionally I know you are a true friend. 

As a final thought, I want to thank our keynote speaker Matthew Walzer, your speech was inspiring. Don’t worry, I am not going to step on your proverbial shoes and join the athletic wear game. But you have inspired me to write to companies and see if they can create an accessible dress shoe and suit. Thank you for the inspiration.

Okay so I lied, I wasn’t done. The conference inspired me to do what my dad told me I should do when I was in eighth grade. Anyone who knows me knows that I’m good at several things including trivia, comedy, and sarcasm, however, I am as some people say an expert at arguing. I have decided to combine this with my advocacy work and pursue my law degree. I plan on focusing on public policy and civil rights.  After obtaining my degree I will continue to fight for the rights of people with disabilities and underserved minorities so that we can move one step closer to an equal society for all.

Seriously, I’m done this time. Thanks for reading. Sorry for being so long-winded but as the title says, I am newly inspired and felt I had to let everyone know how awesome the 2023 Florida Sand “Reunited Conference” was. 

Until next time…

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