Just Tell Your Story

On Wednesday of this week I attended the annual Disability Day on the Hill at Legislative Plaza. I hadn’t been to one of these events for several years, so it was nice to get back to rubbing shoulders and exchanging information with all the fantastic advocates we have in the disability community. Every agency sets up a table in the hallway loaded with information on the organization, what they represent, and a “wish list” of items they would like to see legislated this session. Many also distribute a one-sheet on the art of advocating to those who are visiting with their representatives for the first time.

What might surprise you is how many parents attend each year. As in years past, I met quite a few of them (along with their children, in many cases) who were also there to speak to their legislators about issues near and dear to their hearts. For some, it is an annual event. For other, this was the first time. I do so admire those parents and the courage and determination it takes to keep coming back even when they do not get what they need the first, second, or third time around.

My nature is such that I tend to avoid confrontations whenever possible and have a difficult time speaking out and in front of others. I came of age in the 60’s when everybody my age seemed to be speaking their mind with protests, confrontations, sit-ins, you name it. Not me. That just wasn’t my style. I’ve found that I’m a more “behind the scenes” type of advocate rather than on the front lines.

That changed somewhat, though, once my son was diagnosed with autism back in 1993. I gradually started speaking out at his IEP meetings, especially when I knew I was advocating for something he desperately needed and I was the only one who would speak for him. I started presenting in front of groups wanting more information on autism as I became more knowledgeable about it myself because it was a subject I was passionate about, and I wanted to share that knowledge with others. I’ve had numerous battles with insurance companies over the years which refused to pay for some treatment for my son when I knew they were wrong in denying him that therapy. In short, I found my voice and told our story.

It’s amazing what the right motivation will do to empower you! One of the speakers Wednesday was a young lady with a physical disability who was told from her earliest recollection all the things she WOULD NOT be able to do. She never believed that and went on to graduate college, maintaining a high GPA. One hurdle she overcame was when her college did not want to admit her because she required a personal assistant. The college told her that was not allowed. However, because of her knowledge of the law and her self-advocacy efforts, she informed them that by law she was entitled to that accommodation. But for that, she might never have fulfilled her dream of becoming a college graduate.

People often think that advocacy means you have to be fighting with everyone all the time to get what you want. In truth, advocacy means being knowledgeable enough to avoid fights because you have the facts on your side. You don’t look for battles, but you have enough facts on your side so that you can fight those battles if you must. It also means being willing and able to tell “your story.” We heard that phrase many times this week as we were counseled on what the legislators wanted to hear from us. They want to hear your stories, not just data. They don’t live our lives…we do. What we need to convey is “our story” and only you can do that!

Peace,
Carolyn

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