Stories from the Spectrum
Advocating for Community Inclusion
by Ivanova Smith
My passion is for the inclusion of people with intellectual/developmental disabilities (I/DD). For a long time, I was isolated from my community. I was not included during the first five-and-a-half years of my life. I was born in Latvia, a country that was suffering under Soviet occupation. I was born premature and unwanted. These realities around my birth and orphanhood have had a great impact on my passion! I feel we all should be wanted. We should all be included in the community!
During the time when I was raised in an institutional orphanage, I did not know what family meant. I did not understand the concept of private property. I remember looking forward to just going outside in the orphanage. I remember been happy to see pieces of colorful glass on the ground. I had no friends there. I remember always being alone. I remember not getting much to eat but watery vegetable soup. I could not communicate verbally. I remember just making noises. I remember the day that all changed, the day I was included in a family! I was adopted and become part of the Anderson family. I remember being scared at first of this new world that was ahead of me. But over time, I started to love it. When my family kept feeding me and not denying me food, I was so happy to get to eat! My family now loves telling the story of how much I would eat after we left the orphanage, and how I had breakfast and only stopped to have lunch.
I was so happy to be free. I want that for all people with intellectual/developmental disabilities. I know that as an autistic person, I was at risk of being put in a mental institution if my family had not been able to adopt me. It happens not just in other countries. I moved to Washington State in 1994 where people with I/DD were just starting to be included in their communities.
I was happy to be brought to the USA and be raised in a Christian home! But the United States was not perfect. During school it was hard. Lots of people did not understand me. Lots of people I did relate with were segregated from other students. As a kid in special education, it was very confusing. I heard of how people like me were put in institutions. I heard justifications for that which made me scared of ever having to return to an institutional environment.
It happens here in the USA. We live in a world that says it is ok to put people with intellectual/developmental disabilities in institutions. This is not justice; this is segregation. When I started my journey as a disability-rights advocate, it was after I overcame a lot of challenges. I testified to legislators of Washington State for the first time in 2015. It was during my first Advocacy Day. (Advocacy Days are held during each legislative session to involve self-advocates and families in the legislative process, giving them opportunities to make their voices heard by legislators and to have an impact on policy and budget legislation that affects the services and supports available to them.)
When I heard about what Washingtonians who live in four different institutions had to deal with, it made me want to advocate more. When I heard how people with I/DD are not being given an equal education, it pushed me to advocate more. When I was told it was okay for people with developmental disabilities to be paid below minimum wage, I knew that people like me were not being treated equally in the workforce. Segregation is what hurts us. It why I work with self-advocacy organizations like Self Advocates in Leadership (SAIL), People First of Washington and Allies in Advocacy. Members in each of these groups each have a passion to advocate for rights of people with disabilities.
I also love living in the community! My family worked hard to make sure I was included! My mother was determined for me to go to college and eventually to a university. She believed in me when I did not even believe in myself. I want to help families see the abilities in their I/DD children. I want our youth to not feel ashamed for having a disability. I want people with I/DD to feel comfortable advocating for support. I have been given many opportunities, thanks to networking skills I learned through Central Washington University and Arc of King County. I am honored to work as a Faculty Mentor for the University of Washington’s Leadership Education in Neurodevelopmental and Related Disabilities (UW LEND) Advocacy program. I hope my work helps to bring more people with I/DD into positions of leadership. Our work is valuable and I want that to show.
When I get on the stage to give a speech, I put all my passion into it. I want people who watch me to know that people like me are human just like they are. People with intellectual and developmental disabilities are equal in the eyes of God. We should not be institutionalized! We should not be segregated. I love public speaking, It has been a gift that I cherish. I hope my voice can help people see the value and skill people with Intellectual/developmental disabilities bring. Being Autistic, I am proud and happy to get to live in a country where I can speak freely about the issues that matter most to me. I realize in this time more than ever, we need to advocate more. Lots of changes are going to happen in our country and I want make sure my people are included and not forgotten about.
Because of my passion and advocacy experience, I was invited to speak on October 25th, 2016 at the Legislative Candidates Forum on Disabilities in Clark County, Washington. This was a great honor. I was so happy to see so many people, including advocates and legislative candidates, wanting true inclusion for all people with I/DD. The evening showed me how allies and DD advocates can work together on these issues and make the world a more inclusive place. It reminded me that I was not only one fighting for this! Even the legislative candidates heard the policies I was advocating for in my speech. My hosts were truly kind to invite me to show what self-advocates really need from their government!
I support policies that help people like me live a full meaningful life in the community! I support policies that allow all I/DD people to be included in meaningful integrated employment. Big companies like Microsoft have already seen the potential of autistic programmers! We need more businesses to follow suit. So many people’s talents are ignored because of their disabilities. There are so many media stories talking about how bad it is to be developmentally disabled. It makes me think that our youth don’t see their value…
I am excited to enter this legislative session with the goal that more people are included! I am here to change minds about what my community is! We are not burdens! We are epic people that seek to be included and that is what I fight for.
Regional Advocacy Opportunities:
Advocacy Days trip to Olympia, WA – Clark County Parent Coalition – 360-823-2247
Disability Advocacy Group (SW WA/Portland Metro): www.facebook.com/groups/disabilityadvocacy
Oregon Self Advocacy Coalition: askosac.org
Self-Advocates in Leadership (SAIL), WA – www.sailcoalition.org
Southwest Washington Disability Alliance (SWWADA): www.facebook.com/southwestwashingtondisabilityalliance
This article was originally featured in the Winter 2016 issue of Spectrums Magazine.