February Edition of ADHD Stormwatch

[Guest guest]

Wanted to share this with all of you. This is an article I wrote called " The Power of

Advocacy " which was in this recent National publication,

Story of the Month: The Power of Advocacy

Bowen © 2004

I wanted to talk with you today about the power of advocacy, that I try to display and share with others.

At the many different events I go to or the various groups I am involved in, I get asked a lot “ What is Advocacy “. That can be a difficult question to answer because it doesn’t just mean one thing. Advocacy means different things to different people so I’ll try to explain to you what it means to me.

Putting aside self-advocates for just a minute, I believe that advocacy is a group or groups of people working together for a common cause. This sounds easy, doesn’t it? Well, it does sound easier than it sometimes is. We are making decisions, choices, quality of life decisions, and, in fact, changing lives by our advocacy. So, we need to use our advocacy as an educational tool also to teach family, friends, educators, and legislators how to support these choices along the way. If you provide people with efficient information, I believe this can and will happen. Tell your stories, build relationships--remember effective advocacy results in policy and system changes. For example from my family, one of the stories that legislators will hear over and over is that my daughter, now 29, has been squashed through the system most of her life. No meaningful progress has been made since she went to live in a group home. She has been in the system for 12 years--there are different diagnoses in just about every report there is on her, her name is misspelled on some reports, no one ever read about her chromosome disorder and the medical anomalies associated with it, it has taken us years to get reports, no dental visit in over 9 years- these are examples as there are many more I could give you. She is verbal but cannot communicate daily needs, likes, dislikes, concerns as you and I can. Without us as advocates, I hate to think what her existence would be like.

Information is power. Educating yourself and others is critical. We are lucky here in Georgia to have many agencies, groups, and people that are helping us advocate effectively. We, at the Arc, are your unified voice so please join us, work, learn and share with us. You do not have to become walking encyclopedia. However, the more skills and information you learn, the better you can advocate.

Some resources we have here in GA are online discussion groups that are very popular with parents. There is also another very popular discussion group for advocates around our State to pass along information from their groups / agencies and, through, this network of heads of agencies and groups, we can get this information to many families in Georgia. Please email me for details about the GA-ParentNetwork and Autism Georgia and Advocatesroundtable.

Be creative in your advocacy. There is no limit to we, as parents, family members, self-advocates and providers, should expect. Establish visibility and build ongoing relationships. Work in collaboration with likely (and even unlikely) partners. Broaden your base of support. And remember, there IS strength in numbers.

Advocacy is it’s own reward. So, take time to celebrate your victories along the way.

You’ll know when you are really an advocate – I will share with you when and how I knew. I knew I was an advocate when I felt like I had made a decision to either be popular or respected. Hopefully, I have remained both but, given a choice, strive to be respected. It is your right and your responsibility to speak up and to speak out. Below is a guideline that I use to show parents how powerful our advocacy can be. I got this from one of my very favorite self-advocates, Kennedy, from the Center on Human Policy at Syracuse University. The numbers represent the advocates involved.

1 1 People see you as a fruitcake sometimes

2 2 Now, you are a fruitcake and a friend

3 3 You have elevated to troublemaker status

10 10 The legislators/ educators say “ We’d Better Listen “

50 50 You are a POWERFUL ADVOCACY ORGANIZATION

So, please tell your stories, advocate for yourselves and your family members, and continue to educate others. Build relationships and work collaboratively with your schools, agencies, and providers. If we can all work together, we can make policy changes, which, if you will remember, is what I mentioned that effective advocacy represents.

Bowen is married and lives in Chamblee, Georgia with her husband and two developmentally disabled children. Her daughter has mental retardation associated with a chromosome translocation at birth (many other medical anomalies are apparent as well). Her son has Autism and ADHD. is on the Board of Directors of the Arc of Georgia, serves on the Governor’s Council on Developmental Disabilities, and represents mental health interests on a local CSB. She also serves on the Board of the Autism Society of America, GA Chapter, and is the Family Voices State Coordinator for Georgia. Bowen may be reached at: beammeupbaby@...