♪Lean on me
When you’re not strong
I’ll be your friend
I’ll help you to carry on♪
Those lyrics to the song Lean On Me are what I hear when I think of the word “advocacy”. But what does advocacy look like?
When I was had my first Tourette Syndrome episode, it was scary. Not just that I couldn’t control my body, but that everyone would see me differently. It was the longest day of my life and I know it was horrifying for my mom who was called to the school before an ambulance arrived. A few days later, my mom and I would go to the neurologist where I underwent testing. I had a couple other episodes but they were shorter than that scary first. That was one dragon I didn’t want to chase.
After my diagnosis, we had gathered as much information as was available about it. Even in the 90s, accurate information wasn’t always easy to come by. To my surprise even many doctors were uninformed. But my mom took it upon herself to learn as much as she could and, I later learned, she had a meeting with my teachers about my illness and what they should do when another episode happens. My mom was being my advocate before I knew what the word was or meant.
Fighting for a person or group, teaching others about that person’s or group’s obstacles, educating yourself about their obstacles and what they have to face is the very definition of what an advocate is. My mom was my advocate as a teen. I’ve had to be one for my son’s mom and even myself. Whether it was me being an interpreter for her or educating others about why I couldn’t hear them or making the doctors take her seriously despite her inability to hear, I took the cue from my mom to advocate in the face of ignorance.
Looking back to when I started this blog, I not only took my cue from my mom but also from my friend Zayna. Her twin daughters were born with heart defects and she fought for them to get the best care to save their lives. One of the twins needed heart surgery; she fought hard while educating others, even doctors, on what they needed and the care that they required. When she found the right hospital and the right doctor, with God’s help, she moved mountains to get her daughter the surgery and care she needed. Now the twins are healthy 7 year olds and their mom was their greatest defender and advocate.
I write this blog because I care about the Deaf/HoH community, the Tourette Syndrome community and I try to educate in all the ways I can. What my mom did for me and what Zayna did for her daughters is what I hope to do for the communities I belong to. There are many who don’t understand even the most basic things about hearing loss/deafness or think Tourette is the cussing disease. I also want to help those of us within the communities to be empowered.
Advocates are superheroes and the first one I ever knew is my mom, Bobbie Jackson.