Conversations with Self-Advocates: Part II
The Special Hope Foundation recently expanded its Self-Advocacy Advisory Committee, which, among other things, reviews the proposals that the Foundation receives and provides input on whether or not applicants should receive funding, and whether a proposal is designed well for people with disabilities.
Ivanova Smith, a member of the committee, was born in 1988 in Soviet occupied Latvia where she lived in an institutional orphanage and was diagnosed as developmentally disabled. When she was adopted at 5, she was still not able to communicate. Through school she struggled with learning math, reading and writing. Her family taught her to read because the school was not able to. Ivanova received special education services from kindergarten to grade 12, and also received support in higher education. Ivanova lives with her husband, Ian, who loves and supports her.
How did you learn about the Special Hope Foundation?
Ivanova: I learned about the foundation from a fellow activist who works for Autistic Self-Advocacy Network (ASAN)
What has been your experience with health care through the years?
Ivanova: My experience with health care is long. I had multiple surgeries on my feet and one on my eyes. So I have that experience being a patient. I now work for a medically focused leadership training called the LEND. It stands for Leadership Education in Neurodevelopment and Related Disability. There I was able to to gain lots of knowledge on how medical issues impact policy. I was the first Advocate Fellow for LEND in the Fall 2014. I was fellow for two years then I became UW LEND Advocate Faculty! I currently help new advocate fellows through the training. I gain lots knowledge on diagnostic evaluation work and how to screen for different type of disabilities in children. I also learned about how federal and state policy affect health care for children with developmental disability.
What is the most common misconception that people have about you?
Ivanova: Through out my life I not been able to hide my disabilities. Lots of times people assumed I was slow. People used “retarded” and “child” to describe me because I hold a little wookies phlushy as a stress reliever. My autism is visible because I rock back in forth and have a speech impediment. But when I start talking about politics or history people see me as having knowledge. I want to help end this stigma of people with intellectual/developmental disabilities. When we are adults we should be respected as adults. We have intellect that can’t be measured with IQ testing, which is heavily biased for verbal language and math.
Was there an “aha” moment when you realized that you wanted to advocate not just for yourself, but for others with disabilities too?
Ivanova: I first wanted to become an advocate when I learned about my rights at Central Washington University. Before I went there, I was in a job situation where I was treated badly. I did not know my rights then. I also did not know my rights in public school where I was bullied greatly. I helped other people with disabilities not go through what I want through. CWU give me lots of information on disability justice. I was able to look at the history of advocacy which inspired me to be a advocate.
I am a devout Christian and I feel I am called by God to continue this work.
What kinds of things would you like to accomplish on the Advisory Committee of the Special Hope Foundation?
Ivanova: I want to help improve health care outcomes for people with disabilities. I hope I can help find best ways we can support organizations advocate for the rights of people with disabilities so we can have full and happy lives! We need make sure all disabled people have access to high quality care. I also want to help educate the medical community on the importance of not using the mental age model to explain how intellectual/developmental disabilities affect patients. Many People with I/DD have been discriminated against and have been barred from rights as adults and were not allowed full autonomy. The reason for these abuses is because we are seen mentally as children. And sadly lots of medical professionals use mental age to explain why a person has sudden impairments. Lots of times these false explanations cause people to lose the right to make their own decision in medical treatment. This needs to change. We all grow-up!
Thank you Ivanova!
The mission of the Special Hope Foundation is to promote the establishment of comprehensive healthcare for adults with developmental disabilities designed to meet their unique and fundamental needs.