The Professional Fellows Program on Inclusive Civic Engagement
From Stigma to Strength: My Journey as an Advocate for Children with Epilepsy
Published: Dec 17, 2024
Country: Tanzania
Fides Peter Uiso is a Fall 2022 alumna 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 Fides.
I am the solution
That simple yet powerful realization has been the cornerstone of my journey as an advocate for children with epilepsy and developmental disabilities. Through my work and advocacy, I have witnessed firsthand the challenges families face, and I have seen how the solutions are often within our grasp if we are willing to act.
The Professional Fellows Program (PFP) on Inclusive Civic Engagement provided me with valuable skills in networking, leadership, and advocacy. However, what truly made this experience transformative was the mentorship I received from remarkable individuals, including Dr. Megan Roberts and Wanda Felty from the University of Oklahoma Health Sciences Center (OUHSC). Their guidance shaped my personal and professional growth and helped me understand the profound impact of inclusive civic engagement.
During Megan’s outbound exchange to Tanzania, she and I visited schools and communities, where we observed the challenges families face when trying to access education for their children with disabilities. One family’s story left a lasting impression. Their child, who had epilepsy, was unable to attend school simply because the family could not afford disposable diapers.
This story is not unique. Many children with epilepsy or other developmental disabilities struggle with incontinence, which can severely hinder their ability to engage in school and other community activities. As a result, many families avoid social interactions and keep their children at home because they cannot afford the necessary supplies to manage incontinence.
As I reflected on this heartbreaking reality, I knew there had to be a better way. Megan, with her insight and expertise, proposed a solution: reusable diapers. Not only would these be a more cost-effective and sustainable, but they would also help families manage incontinence while creating an opportunity for small-scale business development. This would be particularly valuable for mothers who, due to the caregiving needs of their child, often struggle to maintain traditional employment.
Inspired by this encounter, I created a prototype for a reusable diaper that could meet the needs of these children while reducing waste and cost (Figure 1). A friend helped us design a logo that would represent the project and resonate with the community (Figure 2). We decided to turn this idea into action. Megan and I launched a project called Safe Safi, meaning safe and clean in Swahili, through my organization, the Tanzania Epilepsy Organization. My organization works with a strong network of mothers who would benefit from this initiative.
The goals of the Safe Safi project are:
- To improve the health and education of children with epilepsy or other developmental disabilities by providing a sustainable, cost-effective way to manage incontinence in school and community settings.
- To empower women by educating them on how to produce environmentally friendly, reusable diapers, thus alleviating their economic burden and providing them with a sustainable source of income.
Like any new initiative, the Safe Safi project faced significant challenges, especially around funding. But through the support from friends, family, and mentors, we raised 2,000 Euros, which provided the foundation for our initiative. With this funding, we were able to purchase essential equipment, including six sewing machines, diaper materials, sewing kits, overlock machines, and diaper packaging.
The first phase of the project will involve training six mothers from the Tanzania Epilepsy Organization’s Mothers on a Mission (MOM) Forum. This forum, which I co-founded with Megan after my PFP experience, is dedicated to supporting mothers of children with severe epilepsy and other developmental disabilities.
In December 2024, we will begin training these mothers on diaper-making techniques, financial literacy, sales and marketing, and provide ongoing mentorship. Over time, we envision these mothers running the business independently, while also training others within their community to expand the initiative further.
As we move forward, we will measure the success of the initiative through key metrics, such as:
- waste reduction and environmental benefits
- cost savings for families
- health benefits for children
- increased awareness of sustainable parenting
- economic empowerment of mothers
- community engagement
Ultimately, we aim to expand the project so that trained mothers can share their knowledge and skills with others, creating a ripple effect for positive change. By incorporating elements of economic empowerment, health, education, and environmental sustainability, the Safe Safi project will help us make a tangible difference in the lives of children with epilepsy, their families, and the wider community (Figure 3).
