Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

Eric McVay is a longtime self- advocate and leader in the self- advocacy movement who has a broad knowledge of legislative issues affecting people with disabilities in the state of Maine and across the United States. Below, he talks ​​with Katie Arnold about his work with advocacy organizations and how his sister, Tonya McVay, shares and supports his passion for the work.

What does self-advocacy mean to you?

Self-advocacy means being able to advocate for myself and others and also being able to advocate for the things I believe in related to people with disabilities.

When did you get involved in self-advocacy?

I got involved in 2006. The first thing I became a part of was the Maine Developmental Disabilities Council. I applied for the position and was selected to be a member and appointed by the Governor. I got involved in the Disability Leadership Institute and learned leadership and advocacy skills. Then I joined by statewide self-advocacy group called Speaking Up for Us. Then, in 2012 I went to my first national self-advocacy conference with Self Advocates Becoming Empowered (SABE). I became an alternate on the SABE Board in 2012 and then became a full Board member in 2015 and then became Secretary in 2018 of the Board. Also, in 2013 I became the SABE representative on the Sibling Leadership Network board and have recently become the Treasurer.

How does your sister support you in self-advocacy?

My sister supports me in self-advocacy by helping me to fight for what I need. She also helps me manage my money to travel to meetings to be involved in my advocacy groups.

Why do you think sibling support is important?

I think sibling support is important because siblings have needs to be met as well. It will help to ensure they have the information and support to help their brothers and sisters with disabilities. Without the siblings we don’t know what could happen to some of those brothers or sisters with disabilities such as ending up in institutions or places they don’t want to be.

What ways do you support your sister?

I call her every day to check in and see how she is doing. Around the holidays we get together and have fun together. She comes over to my place sometimes and we spend time together. Also, before my mom died a couple years ago, I would try to help her with things she needed help with, and my sister would help, too. We also supported each other through the death of our mom.

What ways does your sister support you?

Helping me get services. She is a social worker and works for the Department of Health and Human Services. She is in child protective services. She has been helping me fight for years to get the services I need. She helps me with my money and makes sure I have the money I need to pay rent and live my life.

How is the support you get from your sister similar to or different from the support you get from your parents?

My father primarily supports me with transportation by driving me to the train or bus station. My sister is more involved now.

What do you think is important for brothers and sisters of people with disabilities to know?

It is important for siblings of people with disabilities to know how you can have caring family members help them through different aspects of life. Especially as parents age it is important for siblings to get the information they need for transitions in the future.