I Am An Adult Even Though It Is Hard To Believe So Please Start Treating Me Like One

People with disabilities are often infantilized even by those closest to them. 

I am 37 years old but sometimes I feel like I’m twelve. I am currently reading a book with my girlfriend Samantha who I affectionately refer to as my “little alien.” The book is entitled The Woman In Me by Britney Spears. Spears’ memoir talks about her early life as a performer and how much she enjoyed it but it also talks about the conservatorship she was under for thirteen years. During the conservatorship, every aspect of her life was controlled by others. My situation is not as severe as Ms. Spears's, but I can sort of relate to her on some level. 

For those who are new readers of this blog, you may not know that I have a disability known as Cerebral Palsy or CP, or as I like to call it, T-Rex syndrome. I know some people in the disability community will read this and not like the self-deprecating language I use to describe how cerebral palsy affects me physically. Notice how I didn’t say how my “disability” affects me that is due to a change in my mindset that occurred rather recently.  Those who know me know that I’m not the type of person to make a habit out of using politically correct or sanitized language. That being said, I do not believe I am disabled by my diagnoses. I only have “a disability” because society says I do. In a recent conversation with a person from an organization called the Inclusive Hive Community, the question was asked: What are the most common misconceptions about disability.  This question was asked to five or six of my fellow self-advocates including myself. I answered the question first with my typical response, that we are more than our disabilities, however, that was not the most eloquent answer I heard during the conversation. I believe the most eloquent and honest answer came from a friend of mine, Chatequa Pinkston. She said something to the effect (sorry if I don’t get the words exactly right Chatequa) that society doesn’t see disabled people as adults. We can accomplish great feats in the area of education and self-advocacy, but still, we are treated like children. I know that was not a direct quote but it is pretty damn close. If I understand Ms. Pinkston’s point clearly, it is that as individuals with “disabilities,” we are only disabled when people say we are. Ms. Pinkston is a published author, and founder of a non-profit along with many other accomplishments but still drives home the point that “disabled people” are not treated as people first, rather the focus is on our diagnosis first. 

Another member of the panel who happens to be my girlfriend brought up the idea of disability and family and no, in this case, I literally mean disability and starting a family. She argued that we can achieve great goals in every aspect of life but when we express our desire to start a family we are looked at as if we have three heads. In this case, even the ones we love sometimes say people with disabilities should be satisfied just being in a relationship and “playing the cute couple”; why should we want more. To those skeptics and naysayers, I submit the following argument: it is in human nature to carry on and produce offspring. Little kids not only give parents a chance to pass on what they know to the next generation they also give those around them the opportunity to realize what life is all about. 

These two arguments seem unrelated, but I use them to drive home the following point: it is time to stop treating men and women who are in their 30s and 40s as if they are incapable of living a “normal life”. We are living in 2023 not 1823. The archaic views about people with disabilities maturing slower than their abled-bodied counterparts are just not accurate. If we mature at a different speed than our able-bodied counterparts it is because we have not been given the opportunity to grow and develop without being coddled. Whether it is financially or otherwise, disabled people have the right to fail. It is through failure one grows into who they are supposed to be. The only way “disabled people” are going to grow is when people who love and care for them as well as society as a whole stop treating this entire group of people as if we are incapable of taking care of ourselves if we are given the right tools. 

It is time to end this practice, but I know it will take more than just this blog to change the minds and hearts of not only my loved ones but almost everyone else as well.

I know that was a lot to digest and this has been one of my more in-depth blogs of late. Always remember though no matter how heavy the subject matter gets, we as “disabled people” need not let others' perceptions or beliefs derail our overall happiness. 

Until next time, Your Friendly Neighborhood Super Advocate,

Jay

 

The Power of Disability Advocacy: Making a Difference and Driving Change

I know I have written a lot about disability advocacy I felt it was time for a refresher/ beginner's guide for those who are reading this blog for the first time and do not know much about disability advocacy. I recommend you read this blog first and then sample my other pieces. 

Disability advocacy is a formidable force that has the power to break down barriers, challenge stereotypes, and drive meaningful change in society. It serves as a catalyst for transforming attitudes, policies, and systems, ultimately creating a more inclusive and equitable world. In this blog post, we will explore the remarkable power of disability advocacy, highlighting how it makes a difference and drives change at individual, societal, and systemic levels.

Empowering Individuals and Amplifying Voices:

Disability advocacy provides individuals with disabilities a platform to be heard, acknowledged, and valued. It empowers them to advocate for their rights, express their needs and aspirations, and participate fully in society. By amplifying their voices, disability advocacy helps individuals gain confidence, build self-advocacy skills, and assert their rightful place in all aspects of life.

Shattering Stereotypes and Promoting Inclusion:

One of the key roles of disability advocacy is challenging misconceptions and stereotypes surrounding disabilities. Through awareness campaigns, education, and personal stories, disability advocates work tirelessly to dismantle biases, promoting a more accurate and inclusive understanding of disability. By highlighting the diverse abilities and talents of individuals with disabilities, advocacy efforts foster a culture of acceptance, respect, and celebration of differences.

Influencing Policy and Legislation:

Disability advocacy plays a pivotal role in shaping policies and legislation that protect the rights and improve the lives of people with disabilities. Advocates work closely with lawmakers, government bodies, and organizations to advocate for the removal of discriminatory practices, the implementation of accessibility standards, and the provision of necessary support services. By driving legislative change, disability advocacy ensures equal opportunities, access to healthcare, education, employment, and independent living for all individuals with disabilities.

Fostering Accessibility and Universal Design:

Accessibility is a fundamental aspect of disability advocacy. Advocates work towards creating an inclusive environment where people with disabilities can fully participate. This involves advocating for accessible infrastructure, public spaces, transportation, information and communication technologies, and digital platforms. By promoting universal design principles, disability advocacy not only benefits individuals with disabilities but also creates a more inclusive society that benefits everyone.

Promoting Employment and Economic Independence:

Disability advocates strive to break down employment barriers and promote economic independence for individuals with disabilities. They work with employers to raise awareness about the value of inclusive hiring practices and the benefits of a diverse workforce. Through advocacy efforts, job opportunities are created, workplace accommodations are implemented, and discriminatory practices are challenged, fostering an environment of equal employment opportunities and economic empowerment.

The power of disability advocacy cannot be understated. It has the potential to transform lives, challenge societal norms, and drive change at all levels. By empowering individuals, shattering stereotypes, influencing policy, fostering accessibility, and promoting economic independence, disability advocacy paves the way for a more inclusive and equitable society. It is through collective efforts and the unwavering determination of disability advocates that we can build a world where every person, regardless of ability, is embraced, valued, and given equal opportunities to thrive. Let us stand together and continue to harness the power of disability advocacy to make a difference and drive lasting change.

Till next time, 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

Thank You

So this is not going to be like a regular blog of mine. It is just a quick note to thank you for your support with the blog in general, but specifically for any of you have called to support the CRPD. Remember, the second round of hearings is this Tuesday, November 12^th. They can be seen on CSPAN or the Foreign Relations Committee website. However, once these hearings are over, that does not mean the process is over. The issue will not come to a vote for several months, so I ask for your continued support and ask that you continue to call your senators until the American disability community has more to be remembered for than just the ADA. Here’s to hoping we can pass the CRPD within the year. Thank you again.