"A Story Never Told is Like a Thought That Never Happened"

Published: Jun 05, 2024

Country: Kenya

Ombati Elizabeth Nyabiage is a 2024 Fellow in the Professional Fellows Program on Inclusive Civic Engagement. This program is sponsored by the US Department of State’s Bureau of Educational and Cultural Affairs, and is administered by the Institute for Community Inclusion (ICI) at the University of Massachusetts Boston in partnership with Humanity and Inclusion (HI). The following blog post was written by guest author Elizabeth.

"A Story Never Told is Like a Thought That Never Happened." I have borrowed this quote from a speaker during the National Alliance on Mental Illness (NAMI) Walks Kansas fundraiser I attended. A week has passed since I joined my host at the Kansas University Center on Developmental Disabilities (KUCDD). The travel from Nairobi, Kenya, to Kansas was smooth. As Fellows, we first stayed in Boston for two days of joint orientation meetings and tours, which was a great time for bonding before each of us flew to our host sites.

Alt-Text: An African woman with long black hair, wearing a long black coat, stands in front of a wall with the words "KU Beach Center on Disability" and "KU Kansas University Center on Developmental Disabilities." — Figure 1: Elizabeth standing at the entrance of the KUCDD office.

Dr. Evan Dean, the Associate Director at KUCDD who is my host and mentor, picked me up from the airport. It was such a pleasure to finally meet Dr. Dean after months of virtual conversation as I prepared to come to Kansas. On the day of my arrival, we had a family dinner, and I met Dr. Dean’s family. This is now my lovely “family away from home” for the first two weeks of my fellowship.

Alt-Text: Four individuals stand outside in front of a balloon arch composed of green, blue, and white balloons. Among them are one African woman, two white women, and one white man, all wearing identical navy blue t-shirts. — Figure 2: NAMI Walks Kansas Fundraiser Event (Front row: Elizabeth on the left, Addie on the right; Back row: Alison on the left, Dr. Dean on the right).

I was really excited about my first day at KUCDD. The Center’s mission is to enhance the quality of life, self-determination, and inclusion of Kansans with intellectual and developmental disabilities (IDD) and their families. Back home in Kenya, part of my work has involved engagement with organizations of persons with IDD, hence being a part of the KUCDD community means a lot to me, and to my overall advocacy. I received a lovely welcome package set at my desk, which was such a warm and thoughtful gesture— thank you to the KUCDD team!

Alt-Text: On a desk there are information pamphlets, brochures, a squish ball, a t-shirt, lanyard, cup, pens, and a notebook. — Figure 3: Elizabeth’s Welcome Pack to KUCDD on her desk.

My first day at the Center was mainly for orientation, meeting different team members, and, of course, walking around the campus. I was fascinated by the photos and posters on the Center’s walls, especially one that talks about milestones in the story of intellectual disability. It was interesting to see how these histories compare broadly with the stories in my country. In Kenya, as in the US, people with intellectual disabilities and psychosocial disabilities endured years of segregation and isolation, including being put in institutions. There has been a similar change in terminology, from using terms such as “imbecility, mental deficiency,” across the years and how this is changing along with more efforts to promote self-determination and self-advocacy.

I also draw parallels with the story of mental health and our advocacy for the inclusion of people with psychosocial disabilities in communities. Kenya’s troubled 60-year mental health journey that I co-authored recently details some of this.

During the week, I accompanied my host to Parsons, a city which is a 2-hour drive from the University, to observe a community team meeting, which was part of an ongoing research project on youth with intellectual disabilities transitioning into employment. It was an amazing session intended to create a community project led by young adults to ensure that people with disabilities get what they need to work and live independently. The session was key in encouraging me to start thinking about strengthening my follow-on project, which is about increased engagement of women with disabilities in community civic spaces.

Alt-text: A group of five individuals, four women and three men, posing for a group picture. Among the women is one African woman and three white women. Among the three white men is an individual who uses a wheelchair. — Figure 4: Community Team Meeting in Parsons (Front row from left to right: Brad Linnenkamp, Elizabeth, Melanie Standley, and Sherlie Reynolds; Back row from left to right: Dr. Dean, Shelli Nyambane, and Sean Swindler).

We also participated in other interesting activities. Together with my host, we met Dr. Rene Jamison and Dr. Jessica Schuttler, who lead the Leadership and Education in Neurodevelopmental Disabilities (LEND) program at the University of Kansas Medical Center. They described a program they created called Girls Night Out (GNO), a community-based social and self-care program for autistic and other neurodivergent girls and young women. We had wonderful discussions where both Drs. Jamison and Schuttler offered suggestions on making my follow-on project stronger based on the work they are doing at GNO.

On the last day of the week, I had a great opportunity to take part in the NAMI Walks fundraiser. The National Alliance on Mental Illness (NAMI) is a grassroots mental health organization dedicated to improving the lives of persons living with serious mental illnesses and their families. It was a great way to cap the week; it left me feeling motivated and inspired for the coming days. By the end of the week, I could see how my follow-on project will evolve with the different experiences and new insights that I continue to encounter during the fellowship.

Alt-Text: An African woman stands between a white woman and a white man under a sign that reads “NAMI.” — Figure 5: NAMI Walks Kansas Fundraiser Event (From left to right: Dr. Sherrie Vaughn, NAMI Kansas, Executive Director, Elizabeth, and Dr. Dean).

In the coming weeks, I am looking forward to meeting again with Drs. Jamison and Schuttler, to continue learning about how the community teams that Dr. Dean and his team lead support the advocacy of youth with disabilities. I also look forward to learning more about the services NAMI and other supportive mental health organizations provide. Next week, I am excited to attend a training by the Kansas Leadership Center on civic engagement.