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People Taking Responsibility for Advocacy in their own Lives

Self-Advocates Becoming Empowered April 10, 2012 Facilitated by Max Barrows


Ryan Duncanwood California

Bryon Murray Utah

Chaqueta Stuckey South Carolina

Clint Perrin New York

Anne Fracht Massachusetts

Eric Treat Arkansas

Hmmm.who is the boss in your life? It is amazing how many self-advocates lead the way by speaking up to legislators and serving on boards. But when you take a closer look, you may be surprised at what you see. When it comes to your life, are you really in charge? Many peer leaders do an excellent job speaking up for others but are reluctant to ask for support to make changes in their own lives. This presentation will include stories from peer leaders who have found ways to deal with this issue.

1. Could you share a time in your life where you were hesitant to speak up for yourself?
Individual Education Plan (IEP) meetings in high school. Asking for an accommodation on the job from the Boss. When I got services, I felt overpowered by the agencies. I was scared about my support staff; I didnt know who I was. When people look at me with my disability, they think I dont know anything.

2. Tell me about a time you felt really frustrated, or uncomfortable while speaking up for yourself.
Asking my parents for more freedom riding my bike into town by myself. Speaking in meetings where there are lots of professionals present. When I worked in law enforcement, it was hard to be taken seriously by the other cops, because of my disability. When I ran for the SABE Board, the state DD director didnt believe it when I got home; that was frustrating.

3. Why is it easier sometimes to just continue to let other people make decisions for you?
Because it takes more energy to disagree. I hate having conflicts with people in general. I fear that what I say will come back negatively Its easier to not go through the hassle People argue with you because they think they know best Because you dont need to think about it, you dont have to take the time or effort.

4. Who has made decisions for you that could otherwise have been made for yourself?
Parents Teachers Work supervisors Disability Professionals Self-Advocacy group Advisors Other family members Support workers

5. What about team meetings where you have a place at the table. What makes it hard to ask for what you want in these meetings?
Sometimes it is hard to know exactly what you want. Feeling uncomfortable about how people may react to what you ask for. The process of asking for things for myself; its just hard. The agencies felt like they had control over you; I didnt feel like they listened to me. They had the power and said: This is the plan, go by it.

6. Where is the pressure coming from when its hard to speak up for yourself? Are you worried about how other people may see you, or are you worried about how you see yourself? Or both?
When meeting with professionals, I worry about how what I say may be heard. (I want to sound like I belong there). From inside the group, your peers: you are afraid of what might happen if you speak out. I worry about both, how others see me, and how I see myself (low self esteem). When I plan a night out with friends, it is sometimes challenging to speak up for what I want, because I feel stuck between pleasing my friends and myself. When I work with legislators, they think I dont know what I am talking about. I am worried more about how I say things and how people hear it.

7. How have you overcome those barriers? So, how do you move

out of your comfort zone (the place that is stress free and feels comfortable) and into your courage zone (the place where change and growth can happen, the place where you are taking risks)?

I listen to my body to cue me toward a direction, when I am not sure. Talking to other people, such as peers mentors, and sometimes parents. Accepting who I am and what my disabilities are; learning more about TBI. Going to leadership trainings. I educate myself by reading and studying a lot about the issues, and about the people Im going to talk with. Pushing through; I tell myself that I need to do it.

8. How do you deal with fear of rejection or criticism if you speak up for yourself?
Try not to get stuck in your head by just thinking in circles. Try not to view criticism as only negative; try to see why you might be getting that feedback. I try to tell myself that I am not responsible for other peoples response to me. I get away to think about it; try to regroup. I try to push myself and face it; that if I dont do it, it wont get done. Having the right supports really helps.

The National Resource & Information Center


Information & Referral Call Center:


Tuesday, April 17, 2012, 2:00-3:00 PM, EDT From Numbers to Action: Understanding the New Autism Prevalence Estimates & How YOU Can Help Families Take Action

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