Personal Story

Feature Issue on Self-Advocacy for People with Intellectual, Developmental, and Other Disabilities

Empowering Leaders Like Me


Ivanova Smith is Chair of Self Advocates in Leadership (SAIL) in Seattle, Washington. In March 2020, SAIL and ASAN joined other organizations to file a complaint with the U.S. Department of Health and Human Services Office for Civil Rights about their grave concerns that discriminatory COVID-19 response plans put people with disabilities’ lives at risk. She may be reached at


I started my advocacy journey in 2011, when I was abused in a workplace. My friends and family helped me get out of that job. This developed my passion to become an advocacy leader in the fight against discrimination toward people with intellectual and developmental disabilities.

For much of my youth I was in special education. But I was not told about my disability. I was taught self-hatred for the way I am. I talked to myself a lot and rocked when I was upset. I was born in Soviet-occupied Latvia and lived there five years in an institutional orphanage. I was adopted when I was 5 and brought to the United States.  I had a hard time understanding the world, and people, and people had a hard time understanding me. I learned about disabilities and the Disability Civil Rights Movement when my family and friends helped me get into Central Washington University. 

Ivanova Smith, chair of Self Advocates in Leadership, stands at a microphone and podium wearing glasses and a teal-green shirt, in front of an American flag.

Networking with ASAN members and partners helped Ivanova Smith better communicate with legislators.

I first got involved with the Autistic Self Advocacy Network (ASAN) when I got invited to participate in the Pacific Leadership Academy. I was representing Self Advocates in Leadership (SAIL), of which I am now Chair. I learned a lot in that program. We learned about SMART goals and how to get advocacy projects done. We worked on a white paper against the institutions. I have been able to take that knowledge back to SAIL members and we will be doing more advocacy on that issue. I also got to be involved with a workgroup around community living with ASAN. I got to work with a wide range of autistic leaders! I got help in sharing insights on the importance of community living and what this means for autistic people. Learning about both public and private funding for services convinced me that we need to support people regardless of how they pay for support. These experiences helped me network with autistic leaders from around the country who need various levels of support. This helped me learn policy that affects other autistic people and also affects me. I am glad to experience the amazing network of ASAN members and partners. It helped me better communicate with legislators like Rep. Derek Kilmer, who I met in Washington, D.C., last November. It is important to promote and empower autistic leaders to be at the table when policy is being decided that affects our lives. I feel ASAN does an amazing job with this. They always help me understand things using plain language and allow me to ask questions to avoid confusion. I really value the advocacy and leadership skills ASAN has given me.