Advocacy is defined as “the act or process of supporting a cause or proposal.” However, everyone has different ways to advocate and concepts of what their advocacy means to them. From my perspective, advocacy means being able to use my experience to influence, present research to support my argument, and propose positive change.
I view advocacy this way because I know that everyone has a different story to share, and some issues hit closer to home than others. Although I have the ability to advocate for myself, I've found myself more and more wanting to also influence change in the disability community. At first I didn’t know where to begin. I found that I needed a lot of help.
That help came when a friend of mine told me about the Partners in Policymaking program (PIP). I was accepted into the program for the class of 2022 and I learned so much about how badly the disability community needs access to basic needs (e.g., housing, transportation, etc.). It was a life-changing experience. Participating in PIP helped shape me as a better advocate - for others and for myself.
One of the Florida Developmental Disabilities Council’s legislative priorities in 2024 is to address the behavioral needs of individuals with intellectual and/or developmental disabilities. As a FL SAND Fellow I will be bringing this priority before legislators during the upcoming 2024 session. This priority is especially meaningful to me because I work as a Board-Certified Behavior Analyst (BCBA) and a clinical director. I work with neurodivergent people from ages 2 to 21, and I lead a team of about 50 supervisors and therapists. I find that there are four common needs that all disabled people have: (1) the ability to advocate; (2) to be respected and accepted by neurotypical people no matter what; (3) to safely live their lives the way they want to; and (4) to be equipped for success when they become adults.
Unfortunately, some insurance only covers services and therapies to address these needs up to a specific age. As a disabled BCBA, it upsets me because disabled adults deserve to have access to these therapies and services should they need them. I have made it my life’s mission to ensure that those I lead understand the neurodiversity movement & why it’s so important to embrace and accept disabled people as a whole.
While advocating for others is important to me, I've also learned the importance of speaking up for my own needs in the workplace. For instance, I find that I need access to visual and written prompts. While I do not have an auditory processing disorder, I do find myself feeling very overwhelmed when too much information is relayed orally. As a result, I require visual supports, assigned tasks in writing, and transcripts. By having these, I have been able to set myself up for success while also helping others to do so. I didn’t realize how badly I needed access to these things until a meeting I had with several people I work with. I wrote to my staff and informed them of the supports I needed. In that moment, I was free.
My advocacy journey has also included lessons learned from mistakes. I've learned that it's important to be able to back up positions for which I advocate. For example, a few other self-advocates and I spoke in support of Supported Decision Making when visiting the State Capitol in March 2023. Despite the self-advocate that spoke about his personal experience having an impactful story, the legislator we spoke to was not convinced to vote for the Supported Decision-Making bill. He asked several questions and presented research of his own that we were not prepared to address. It was a hard lesson to learn but it was one that impacted me enough to make sure I conduct research and have evidence to back up my positions in the future.
Your voice matters so much more than you know. As William Faulkner says, “Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world...would do this, it would change the earth.” Everyone needs different supports that will help set themselves up for life. Being able to advocate can change the course of your life, and it’s our job to help make waves in the disability community.