Earlier this year I traveled four hours from Winter Springs to Tallahassee for the first time ever to advocate on several legislative issues in honor of Florida’s Developmental Disabilities Awareness Day (DD Day), March 14, at the state capitol. It was a day to remember for sure.
I was in meetings with multiple state legislators. As a Partners in Policymaking graduate, I felt prepared to go into these meetings with my concerns, as well as those of members of my grassroots FL SAND group, MAGICAL Self Advocates of Orlando. However, it didn’t take long for me to realize that I was in for the ride of my life. Here are three lessons I learned that day.
#1 Have your testimony prepared. Why are you fighting for this issue? Don’t just say you want a specific bill to be passed - cite the house and senate bill numbers and the research on the issues you are fighting for. Give statistics and educate them further. Perhaps the most important part of this is your personal testimony. When a legislative issue is personal, often times you will be listened to. The president of MAGICAL was involuntarily placed under a full guardianship for two years because he was deemed incapacitated. Though he regained his rights successfully, there are a number of people with disabilities under guardianships that might be better served by less restrictive alternatives, like Supported Decision Making. Supported Decision Making allows an individual full rights of autonomy with the support of trusted providers, friends and/or family. This was an issue that hit home for him; that story alone made an impact on a number of representatives.
#2 Prepare for disagreement. Though we had the support of several legislators, there was some disagreement. In one meeting another self-advocate and I spoke in support of Supported Decision Making and the attention it desperately needs. We were met with a number of comments about Limited Guardianships --which allows an individual decision-making power for some but not all areas of their lives--and how this was different from Supported Decision Making. When I spoke about how difficult it may be to make decisions and having a Supported Living Coach to help with making those decisions was how SDM works, the legislator responded, "And that is why I disagree with Supported Decision Making." Although it was disheartening to hear, in a way I’m glad it happened because it means we have to continue researching and educating others about counter arguments related to our issues.
#3 Follow up with your local representatives. While it’s great to meet with legislators in Tallahassee, it is vital to follow up afterwards to help ensure that your messages are remembered. Something as simple as a “thank you for meeting with me to discuss these issues, I look forward to speaking with you in the future” goes a long way. Since our time in Tallahassee, MAGICAL had one meeting with representative Anna V. Eskamani and ran into her at an event in Orlando. These meetings served to reinforce our message and disability voices on DD Day. Speaking to a representative at the capitol building on DD Day does not guarantee success. Please, please keep going!
Even if you feel your voice is drowned out amongst a sea of voices, your advocacy matters. You have the choice to advocate, or not to. Fight for what you want to change; even if it goes nowhere, you still brought it to your representative’s attention. Some say silence speaks volumes, but when it comes to asking for what you need to live in the community as a person with a disability, advocacy always speaks louder.