What Self-Advocacy Means to Me
By: Renee Manfredi, Sargent Shriver International Global Messenger and Special Olympics Hawai’i Athlete Leader
Maybe, you are like me. I did not know what advocacy meant or what a self-advocate was. Advocacy is to speak up for something important. Self-advocacy means that you are learning to speak up for yourself and the things important to you, such as your rights, getting a job, going to school, and your health. It is learning you have a voice.
My journey into advocacy began when I became a Global Messenger for Special Olympics Hawai’i. I am not sure it ever occurred to me that I had a voice or that what I had to say was important. But when I began sharing my story as a Global Messenger, people listened to me and they really cared about what I had to say. That’s when I learned: I have a voice and that my story is important. This changed my life.
I then joined the Hawai’i Self-Advocacy Advisory Council (SAAC). This is a self-advocacy group run by other self-advocates who have intellectual and developmental disabilities (IDD), just like me. SAAC focused on teaching us our rights and encouraging us to share our hopes and dreams for our lives. I learned about “nothing for us without us.” In other words, if it affects me, I need to be involved in the conversation. Between being a Global Messenger and part of SAAC, I became more confident in using my voice. I could see the importance of speaking up and not just letting others speak for me. People without IDD speak for people with IDD all the time. While that is nice, our voices are often not heard. It is important that our voices are heard and that we are taken seriously.
Learning about the importance of self-advocacy and using my voice inspired me to continue to speak on behalf of others like me. I became a member of the Hawai’i Developmental Disabilities Council, where I give my input on people with IDD's concerns and needs in our state. I have met with my State and Federal Representatives each year and discuss the bills that I am in favor of or against. I meet with other advocates from around the country to discuss supports needed for persons with IDD, as well as to celebrate the progress that has been made.
I am also a Special Olympics Health Messenger. As a Health Messenger, I learned about the importance of health self-advocacy. What is health self-advocacy, you may ask?
Health self-advocacy is where you speak up about your health needs and concerns. You are not on the sidelines of your own care. You are actually taking charge and making decisions or are working together with your support team toward your goals.
It also means you lead your own doctor’s meetings and that the doctor or health professional is speaking to you, not your caregiver. This does not mean that your caregiver is not with you or that you do not need their assistance. It does mean that you are the one leading the discussions, asking the questions, and making the decisions about your health. Health self-advocacy is also asking for information to be explained in a way that you can understand. Maybe you need someone to speak slower or use plain language or use pictures. During COVID-19, you might need to advocate for yourself and ask that your caregiver be allowed into the appointment with you. As a Health Messenger for Special Olympics, one of my goals is to equip persons with IDD with the skills to advocate for their own health. I think that speaking up for yourself, especially for your own health needs, is one of the most important things you can do.
First, you learn how to advocate for YOURSELF, for what is important to YOU.
Then, you begin to advocate on behalf of OTHERS, who may not have a voice or may not have found their voice.
Finally, you advocate for your COMMUNITY.
Who can be a self-advocate? You can!
Who can be a health self-advocate? You can!
Why? Because no one knows you better than you do.
If you would like to hear from other self-advocates about their health advocacy journeys, you can find their stories on the Special Olympics Inclusive Health website.
