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SABE Self-Advocates Becoming Empowered www.sabeusa.

org Funded by the Administration on Developmental Disabilities

Betty Williams
Indiana

Vicki Turnage
Alabama

Nancy Ward
Oklahoma

Steve Holmes
New York

Chester Finn
New York

Deb Kney
Rhode Island

Listen and support the person with positive feedback. Believe in the person and believe in the dreams; give honest non-directive feedback and help when asked. An ally supports people in talking about their dreams, identifying how they can achieve their dreams, securing the resources needed, celebrating along the way.

They re like a mentor even though they don't make decisions for you. They encourage somebody with a disability to make the best decisions with the right supports. That's what it takes to believe in somebody. They give you the space to go for your dreams. They find information, connect you to the right resources and people so you can do what you want with your life.

I don't think ally and adviser are the same but they can be. If I am asked to be an advisor I take on the responsibility of listening, supporting and helping as I am requested. I always see myself as an ally as an advisor. I am also an ally, but not an advisor, to many people as their friend or co-worker or co-participant in an activity. To be an advisor there has to be a deep trust developed so the group or person feels free to say what they want. Advisors help me understand what is being said in a meeting and help put my thoughts into a presentation.

An advisor by definition typically offers advice, assists individuals and groups in organizing, supported the individual and group in securing and obtaining resources needed etc. An ally is a much stronger active term, we do all of the same things as advisors and in addition we unite and form an active association with self-advocates in supporting the self-advocacy movement. An advisor supports you to organize your ideas and gives advice when needed. We pick our advisors. They need to be able to share knowledge without people saying they are interfering. We need to be able to speak freely. Advisors don t just rubber stamp what a person or group is doing. The relationship needs to be honest and open.

When I hear the word Ally , I think of someone who doesn t have a disability, but supports the rights of persons with disabilities. Another example may be a person who is not gay or lesbian, but is in favor of gay rights. An advisor, on the other hand, is a person who has a professional or volunteer role with a disability rights group or organization. They support the group s goals and help keeps things moving. An advisor may also play the role of an ally.

People make mistakes. It s about how we work through it together. If both of us work we can develop a strong friendship. Be there, wait until someone asks for help. Don t help too little because they might not have the information they need. But avoid helping too much. Let them learn what they can do on their own. Always check in with the person you are assisting and let them direct the amount of assistance you give and know that it might vary from task to task and circumstances.

Always ask what type of support does the individual need to do themselves. Constantly engage in dialogue with self advocates as to if you are doing too much or too little. Being an advisor you have to know when to give advice when to listen and it is not about what you feel personally. You remain neutral. You are there to provided information and support.

Avoid helping in a way that may seem too controlling. You also don't want to act in way where the person feels ignored. Sometimes, somebody who is assisting a person with a disability may want to jump in and say something for you. And, sometimes they may be too quick to help. People need time to figure things out for themselves. It can be hard for advisors to hold back. Another issue that can occur is when a person with a disability asks an advisor for an opinion. Try redirecting the question back to the person. The outcome of this when it s done well is that you are encouraging the person with a disability take ownership of the issue.

Provide good information without taking control of the issue. Assist with looking at the consequences. Even if the group makes a decision that advisors don t agree with, they still should support the decision the group has made. The can be hard to do. Sometimes you have to excuse yourself if you feel too strongly about an issue. If you have information, provide it and then step away.

We just went through this at SABE. Let them know you support them in whatever they decide to do. Provide the information needed to make the decision. If asked, give your best advice. Assist the self advocacy group members in looking at pros and cons of each decision they make. Make sure that you do not push your opinion on the group.

For most decisions, an advisor with the right mindset about their role would celebrate the independent thinking of the group and support the decision. In some situations though, if an advisor totally disagrees with a decision a group is making and believes it is counter to the goals of the group or has other significant concerns, the advisor has an obligation to be upfront about how they feel about things, not silent. Disagreements on goals and strategies are natural in groups and good advisors will support a group's decision unless it is something they simply feel so strongly about that they cannot. In this case an adviser could respectfully give up the role or decline to participate in the outcome of the decision.

It is important realize it goes both ways. Yes we learn from advisors but they can also learn from us. Be patient when helping somebody understand and give enough time to let them say what it is that you want to say. Advisors have an ability to pull out of you what it is you are trying to say. They have the ability to help me walk through a situation and help me to say what I want to say, like when putting together a presentation. We need information in an accessible format. People are left out of so much. We need advisors who we trust to help us understand what is going on in meetings.

Learn from self-advocate leaders and experienced advisors about advisors they work with now and in the past. Talk to them about what makes someone a good advisor and what doesn t. You will get direct useful information about what makes a good advisor. Observe other advisors. Learn about the movement. Talk to self advocates about what roles they want you to play. Have the advisor believe in you and help you to see yourself as a person and to have the confidence in yourself.

Role play and talking about what you job is. Define the role of board members and advisors. Write the roles down. Review them often and remind yourself that your role is to assist and to listen and not to take over and control. If the group is not doing what they should be doing you are there to remind them of what their duties or and responsibilities are. Advisors are not your slaves. It should be a partnership because you are trying to accomplish the same goals. Train them as you go. Let they know what you need, how you need it and go from there. When I thought I could not do something my advisor gave me the encouragement and had the expectation that I would do it myself. I felt better that I wrote the letter on my own.

Have self advocates talk about what life is like with a disability. One tool that is used is called a fishbowl . A fishbowl is when a small group of people with disabilities sit in an inner circle, with the people being trained surrounding them. Those in the inner circle answer questions from a facilitator (preferably another person with a disability), and those in the outer circle don t talk and just watch. At the end, the observers are allowed to ask question and make comments about what they have heard. This is an effective way to hear what is on the minds of persons with disabilities.

Max Barrows 1-802-229-2600 maxwbarrows@gmail.com Vicki Turnage vturnage33@yahoo.com Steve Holmes 1-518-382-1454 seholmes@earthlink.net Nancy Ward nward@thearc.org Betty Williams bwilliams@arcind.org Karen Topper toppervt@gmail.com Deb Kney debkney@advocatesinaction.org Chester Finn chester.finn@opwdd.ny.gov