Such a broad definition to describe something so profound. To advocate for your child is something that all parents do, even though they may not know it. Every time a parent attends a parent-teacher conference, they are advocating for their child. But to advocate for a disabled child is something even bigger than that. It entails learning new languages…the language of testing, legalese and enough medical terms to become at least a nurse and maybe instruct a few doctors too. It entails keeping an ever-vigilant watch on what’s new, legally, medically, therapeutically, educationally. It may mean doing things you’ve never done before like public speaking, writing to your legislator, traveling to distant cities for information or to meet with public policy makers. It may mean your life takes an entire new turn for the benefit of another.
To be a self-advocate means to do all of the above for yourself and others like you in spite of the fact that you’ve been tagged with labels that show others your disability, but not you. It means reminding people every day that you’re not “a Down syndrome,” but a person first, just like everyone else—someone that happens to have Down syndrome and, yes, maybe brown hair too. It means overcoming greater obstacles to achieve the same things others do and showing the world that you can do it too. And it also may mean doing things you’ve never done before like public speaking, writing to your legislator, and so on.
Advocates are heroes in everyday clothes. They are average Moms and Dads, Aunts and Uncles and Grandparents who were given a beautiful gift of knowing the person in their lives who has Down syndrome and the desire to make the world a better place for them. Self-advocates are even greater heroes because they to have the desire to make the world a better place for themselves and they accomplish this despite facing much greater challenges on a daily basis than any of us do.
Advocating for someone or something gives us meaning and purpose in our lives. This page and it’s links and articles discuss not only how to be an effective advocate, but what it means to do this. Advocacy success stories will be included from those who have been steadily working as advocates for people with Down syndrome and other disabilities.