Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:
A meeting with public officials
Legislative forums or candidate meetings
The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families.
Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.
Questions to consider first:
What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family.
How does this challenge affect others?
How might this challenge affect others if nothing changes?
What needs to change?
What can be done to improve the situation?
Who has the power to make a change?
Key information for your story:
Who are you? Be sure to say your name and the district, city, or town you live in.
If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
Clearly and simply describe the problem or challenge.
Explain why this is important.
Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
“I ask you to vote for…”
“I want you to change this policy in order to…”
“I want you to fund a program that…”
Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program.
If you have ever stood up and defended the rights of yourself or others you were acting as an advocate.
Self-advocacy means taking the responsibility for telling others what you need and want in a respectful and direct way. Anyone can be a self-advocate and while speaking up for you or someone else can make you feel empowered, independent and more in charge of decisions for your life, it is not always an easy thing to learn how to do. It takes time and practice.
Good self-advocates are informed about the topic they are sharing with others. They speak clearly and calmly and they listen to others and consider the information that they are hearing as well.
Times that you might need to be a self-advocate could be:
In your IEP meeting if you are in high school
When you ask for accommodations for classes in high school or college
Asking for accommodations on the job.
Asking for assistance and accommodations so that you can be involved in your community.
Things you need to know to become a better self-advocate:
Understand your rights and responsibilities.
Make decisions based on what you want or need
Say yes or no
Know that its ok to change your mind
Know that its ok to make mistakes
Express your feelings in a safe and reasonable way
Know who your trusted support persons in your community are that you can ask for help when needed.
Be treated with dignity and respect at all times
Learn to be assertive without being aggressive or disrespectful
It is important to have confidence in yourself, you know more than you may realize. Being prepared is important and some things to remember are:
The goal is the wellbeing of the person you are advocating for
Communication skills, respond don’t react. Avoid seeing others as the enemy. Try to be diplomatic
Learn how to read IEP
Maintain good records and request everything in writing.
Take notes or have someone take notes during meetings.
Don’t attend meetings alone. If you can bring someone with you for support and to help take notes, it really helps. Try not to attend meetings alone.
Remember you are teaching by modeling good behavior and effective communication. Your efforts won’t just affect yourself and/or your loved one, but the community as whole as well.
Assert yourself with common courtesy but be firm. Begin with the end in mind and don’t let yourself get side tracked.
Another important thing to do in order to be a good self-advocate is getting to know your community. What kind of resources are there that can help you? You may gain knowledge and support from connecting with resources like: local support groups, advocacy agencies, faith communities, community associations, and private providers.
Each county has resources that can connect you to the special needs community. PAVE has great programs and resources to help individuals build and strengthen self-advocacy skills such as Community Inclusion for Everyone (CIE) and Parent Training and Information (PTI). You can go to PAVE’s website at www.wapave.org to learn about additional programs. Also, you can connect with your local DDA coordinator to get a listing of other local agencies and support groups/programs in your area such as Parent to Parent, People First, and others. Attending local meetings is a way of connecting with like-minded people who have some of the same passions you do and can help you gain a deeper understanding of local relevant issues.
Becoming a strong self-advocate is key in achieving successful independence and healthy living as an adult in your community. Always remember there are many people who are ready and willing to help you, so don’t be afraid to reach out and ask for assistance along the way!
As a second grade student, this was a daunting question.
I knew Josh was different, but I didn’t know how to adequately explain the nature of his disability; he was just Josh, my brother. I was fortunate enough to grow up in an unwaveringly accepting and unconditionally loving family, as well as being a rather outspoken child, so I was able to converse with my parents about what exactly made Josh different and to find the best way to address these questions.
According to the Arc of the United States, an estimated seven million ‘typically developing’ American children have a sibling with a disability. These siblings often face many of the same challenges and joys as their parents, but they are also faced with their own set of unique tribulations. When a child with a disability is welcomed into the world an array of resources and supports become available to help educate and support parents as they begin their journey into the world of disability activism, but often times in the whirlwind of change and adaptation siblings aren’t directly addressed.
Growing up with a sibling with a disability gave me the opportunity to connect with others in similar situations to share stories and ask questions. We each share an unconditional love for our siblings—laughing about comical things they say or do, joking about the things that annoy us, the sort of stories you would expect to hear about ‘typical’ siblings. Amongst these conversations we also expressed the difficulties of having such a sibling; what it was like to be embarrassed to go out into public for fear of an outburst that would attract unwanted attention, dealing with less of our parents’ attention because our sibling required more, not knowing how to explain to our friends why they couldn’t come over to play, and most of all, dealing with the guilt of having these feelings in the first place.
In my opinion, my parents provided my brothers and myself with the most beneficial forms of support. We maintained open lines of communication and it was acknowledged and accepted that Josh had a disability. We were also provided with the scientific facts about his disability, so when posed with questions by uncertain peers we felt confident giving an intelligent answer. Often times that confidence put others insecurities at ease. Our feelings were always acknowledged and validated, and we learned as a family what it was that each member needed to feel appreciated and supported.