self-advocates

Please share a little background on who you are, what your interests include, and how you came to be involved with OSAC.

My name is Gabrielle Guedon, and I am the Employment Committee Co-Chair for Oregon Self Advocacy Coalition. I like to give a voice to people who otherwise would not have one. My primary passions are my dog, OSAC, and working in the community.

I came to be involved with OSAC at a forum in 2014. At the forum, I met OSAC’s Chair Phil Stone and Jaime Daignault from the Oregon Council on Developmental Disabilities. During the forum, I was feeling frustrated that I wasn’t getting good enough tools and direction to reach my employment and independence goals. At the time, I was feeling depressed and anxious. I had just been told by Vocational Rehabilitation that I was “too disabled” to work for a second time.

However, I have always been vocal and interested in being an advocate. I was raised to earn my own money at a young age. I worked as a respite worker to earn money to pay for my cell phone bill and learn responsibility. In my darkest times in my life, I would go by the phrase, “If I could change one person’s life, the pain would be worth it.” My passion comes from the pain and experiences I went through, and that drives everything I do for OSAC.

I made a change in my life to get where I am today. I am independent, I own my own home, I have a car, and I have multiple jobs. I work really hard for my money and everything I have.

What was your school experience like? In looking back, what would you have changed or improved upon? 

My school experience was really horrible; from elementary school to the day I graduated in 2008. I had hidden disabilities that were not taken seriously by teachers. I started walking out of school, and teachers wouldn’t do anything to stop me. Socializing was really hard too. Students didn’t know how to deal with me because I had a disability. Teachers did not refer me to the transition program, and this would have helped me greatly.

In looking back, I would have liked to have more knowledge of what was going on with me. I have severe anxiety disorder, but it was undiagnosed at the time. If I had known what I know now, my experience would have been different. My advice for a student going into high school is 1) to be sure that you have the resources and information you need to make your own decisions, and 2) to know how different choices will affect you. I would really encourage students to enter a transition program so that you learn how to cook, take the bus, create a budget, and learn other skills to better your life and be independent.

Who was your role model growing up?

My mother was a role model for me, my siblings, and her foster children. She was a case manager when I was younger and a single mother doing everything herself. My mom was always pushing me to make changes in my life. If I didn’t have my mom, I wouldn’t have reached my goals and be where I am today.

What is the one piece of advice you would give to a parent of a child newly diagnosed with a disability?

I would want parents to know how important is to give their child resources to be independent, even in the most minor ways. Resources, encouragement, and confidence can help someone live a much better life. Make sure that teachers and doctors take their child seriously. It’s important that children have the correct information so that they can be experts in their own lives. We don’t want our parents to do everything for us, because then we won’t learn. Let us fall, but support us to get back up.

We hoped you enjoyed last week’s interview with self-advocate Ross Ryan! Now we’d like to turn your attention to another voice, this time Phil Stone of the Oregon Self Advocacy Coalition. OSAC is a statewide organization made up of 18 local self advocacy groups whose mission is to engage communities in advocating for the rights of people with developmental disabilities.

FACT posed a series of questions to one OSAC member, Phil Stone, that should be of interest to parents, caregivers, and young people experiencing disability. (Our thanks to Ryley Newport of Oregon Council on Developmental Disabilities for facilitating this interview.)

Please share a little background on who you are, what your interests include, and how you came to be involved with OSAC.

My name is Phil Stone, and I am currently the Chair of the Oregon Self Advocacy Coalition. I want to make sure that people with disabilities get good jobs at a competitive rate. I believe that we are capable of being out in the community and not living segregated lives.

I become involved with OSAC during the 2008 Disability Megaconference in Salem, OR. The current state-wide self-advocacy group called Self Advocates As Leaders [SAAL] was being re-structured as the Oregon Self Advocacy Coalition [OSAC]. OSAC was created so that local groups would be stronger and we could come together to accomplish our goals.

As OSAC’s leader, I want to see us help people find real jobs in the community. I want be a strong voice representing people with disabilities, and I hope I can encourage younger people with disabilities to achieve what they want in their lives. My other passions include listening to heavy metal music, hanging out with friends, playing video games or being spontaneous and doing something out of the blue, like going out to the Oregon coast!

What was your school experience like? In looking back, what would you have changed or improved upon? 

To be honest, I really didn’t like my school experience. I went to five different high schools before I dropped out of Lebanon High School. I did this after I was told that I wouldn’t be receiving a diploma and graduating with my classmates. I was segregated in a classroom with a group of people who all had intellectual and developmental disabilities. I felt that I wasn’t being challenged and that they were expecting that I wasn’t capable of learning at a normal speed like the rest of the students.

Looking back at my school experience, I would have liked to be included in general education classrooms. I really wish I could have graduated alongside my class with a modified diploma. I wish my teachers supported and understood how I learn best. It might take me a little bit longer, but I like to develop my skills, get materials in advance and have an opportunity to ask questions. It would have been helpful to have peers with disabilities provide me with support and give me guidance and leadership as I entered high school.

Who was your role model growing up?

My mom has been my role model and one of my closest friends growing up. She lets me know what I’m doing well and what I can work on. She was a single mom trying to raise me to be a successful adult. She cares about me and wants what is best for me. I know she strongly supports me being involved with OSAC so that I can continue to grow as a self-advocate for myself and others. I wouldn’t be doing the great work I am today without my mom being such a great supporter.

What is the one piece of advice you would give to a parent of a child newly diagnosed with a disability?

My advice to parents of a child with a disability is to not give up on them. I would recommend pushing them to reach their full potential. There is a fine line between supporting someone and smothering them or holding them back. I think it’s important that people stumble and fall so that they can pick themselves up and try again.

Our last two posts focused on blogs featuring the voices of people experiencing disability. Pretty great stuff! Now we’d like to turn your attention to some local folks who are a members of the Oregon Self Advocacy Coalition. OSAC is a statewide organization made up of 18 local self advocacy groups whose mission is to engage communities in advocating for the rights of people with developmental disabilities.

FACT posed a series of questions to one OSAC member, Ross Ryan, that should be of interest to parents, caregivers, and young people experiencing disability. (Our thanks to Ryley Newport of Oregon Council on Developmental Disabilities for facilitating this interview.)

Tell us a little bit about your background.

My name is Ross Ryan, and I am currently the Sargent-At-Arms for the Oregon Self Advocacy Coalition. I have a passion to help everyone fit in and have the basic human right of a life in their community. I become involved in self-advocacy in my local community of Mt. Angel, OR. Our local self-advocacy group was known as the Victory Alliance.

After becoming a leader of my local group, I joined the state-wide group called Self Advocates as Leaders [SAAL] in 2000. In 2008, SAAL become the Oregon Self Advocacy Coalition in an effort to bring together local self-advocacy groups across Oregon. Since then, I have served as Sargent-At-Arms, the OSAC Employment Committee’s Co-Chair, and a lobbyist for OSAC. Additionally, I work for the Oregon Council on Developmental Disabilities as a Community Advocate.

What was your school experience like? In looking back, what would you have changed or improved upon? 

My first experiences in school were not that good. I went to a speech and language school in Buena Park, California after attending mainstream classes in Connecticut for middle and high school. After California, I moved to Oregon for a transition program at Silverton High School, where I received a modified diploma. Things were good when I was in school, but there was no information to tell me about what to do after school. My parents did not know what to do with me. I knew I wanted to find a job, but I had no support to help me find one. I started working at a grocery store doing recycling, but it was not a good fit for me. I did not have the necessary assistance to do the job, I did not like the hours, and the environment did not let me socialize with other people.

Looking back at my school experience, I would have liked to have tools to understand what my life would be like after I graduated. I enjoyed being included in general education classrooms, but I would have appreciated additional support to have a better quality of life than I did at that time. If I could go back in time, I would make sure that I have a better support system for employment and that I left school with work experience in a field that I was interested in.

Who was your role model growing up?

My role model growing up was my dad and a teacher from middle school in Connecticut named Gary Warren. My dad was always encouraging me to fit in. For example, if I did not do my chores right, there would be a consequence, just like any of his other kids. If I screwed up, I was busted. Mr. Warren understood that we all have potential of doing what we want to do with our lives. He was a great teacher who put up with us and adapted materials based on how we learned best and what we were passionate about. They were both strong role models who helped me become who I am today.

What is the one piece of advice you would give to a parent of a child newly diagnosed with a disability?

My advice to parents of a child with a disability is to encourage them to grow and support them as they learn. I would like parents to know that we want to be treated like anyone else. We have feelings and abilities to do many things just like everyone else, but we just need a little extra assistance to help get us there. I am a prime example of someone who had assistance from my family and other supports that have helped me get to be the person I am today.