Ivanova Smith: A Decade of Self-Advocacy and Leadership at UW LEND

Ivanova Smith: A Decade of Self-Advocacy and Leadership at UW LEND

Ivanova Smith’s journey through the University of Washington’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program began in 2014, where she became the first self-advocate in the leadership training program. Over the past decade, she has played a pivotal role in advocating for the inclusion of individuals with intellectual and developmental disabilities within the UW LEND program and in opening doors for self-advocates in leadership roles.

“It was exciting to be around medical professionals,” Ivanova recalled about her first year in LEND. She was mentored by Beth Gendler, UW LEND Social Work Faculty and FASDPN Social Worker. “My mentor took me under her wing and made me feel connected and safe.” This mentorship was pivotal in Ivanova’s growth as an advocate and leader.

One challenge that Ivanova initially faced during her time at UW LEND was the language used in some of the course seminars. “Some of the language was traumatizing,” she explained, referring to phrases that framed disability as something to grieve. “It felt like they were devaluing people with disabilities.” Ivanova advocated for curriculum changes working with UW LEND faculty to consider more empathic, respectful, and accessible language. “I was happy to make that change, not just for me, but for families and future cohorts.”

Throughout her two years as a UW LEND trainee, Ivanova participated in small group discussions with fellow trainees, sometimes discussing complex ethical issues. “We’d talk about different situations, like what to do if a family doesn’t want cochlear implants because they’re deaf themselves,” she said. These discussions helped Ivanova understand both the family perspective and the medical professionals’ views, which strengthened her ability to advocate. “It made me a stronger advocate,” she reflected.

In her second year, Ivanova’s UW LEND mentors told her they were training her to become LEND faculty. Ivanova became the first UW LEND Self-Advocate Faculty in 2016. Now, after 10 years at UW LEND, Ivanova has mentored many self-advocates and trainees, providing guidance and support as they navigate their own journeys. “I’ve mentored many self-advocates in the program, and each person’s experience is unique. It’s been eye-opening to see how different people need different accommodations and support.”

In October 2024, Ivanova took on a new role as the Community Collaborations Program Manager at the Washington State Developmental Disabilities Administration (DDA), where she now serves as a liaison between the self-advocate community, families, service providers, and legislators or policymakers. “This is a brand-new position, a pilot program,” Ivanova explained. “My job is to make sure services are flexible and meet the needs of people with intellectual and developmental disabilities.”

Beyond her work at UW LEND and DDA, Ivanova has been actively involved in legislative advocacy. One of her proudest achievements is the passage of the Washington State HB 1541 “Nothing About Us Without Us” bill, which ensures that people with disabilities are included in legislative workgroups. “It took four years to get that bill passed,” she said. “We wanted to make sure that people with disabilities had a seat at the table in decisions that affected them.” Ivanova is actively involved in implementing the bill and continuing the work to ensure its success.

Reflecting on her journey, Ivanova expressed her excitement for the future: “I’ve been honored to work with UW LEND and to see the gates open to the self-advocate community in the program. I’m also excited about the growing number of self-advocate leaders through LEND.”

Watch Ivanova discuss the “Nothing About Us Without Us” movement in this video:

Ivanova’s journey has been marked by her dedication to mentoring others, advocating for policy change, and ensuring that people with intellectual and developmental disabilities are included in all aspects of decision-making. As she continues in her new role, Ivanova remains a powerful voice for self-advocacy, ensuring that the principles of “Nothing About Us Without Us” are upheld for future generations.