Interview: Youth Panel gives meaning to inclusive participation
When it is your mission to build a world that is truly open to young people with disabilities, who better to ask for guidance than people who have lived experience?
This is why Liliane Fonds started the Youth Panel: a dedicated group of young people with disabilities, who enrich our organisation with valuable advice and make our programmes better. We spoke with three members of the Youth Panel and asked them a few questions.
- Joyce Mukatanga (Zimbabwe), a disability and women’s rights advocate, a high school student and chairperson of the sexual and reproductive health and rights (SRHR) club at her school.
- Rahel Teshome Demeke (Ethiopia), a disability inclusion advocate and a mathematics teacher at a high school for both deaf and hearing students.
- Daphne Visser (Netherlands), Advocacy and SRHR-advisor at Liliane Fonds.
What motivated you to participate in the Youth Panel?
Rahel: “For me, I felt motivated by the opportunity to ensure that young people with disabilities are actively involved in decision-making processes that affect their lives. I want to contribute my lived experience and professional knowledge to support more inclusive and impactful programs. I am proud to be part of a platform that empowers young people with disabilities to contribute meaningfully.”
Joyce: “I want to advocate for equal opportunities for other young people with disabilities. In health care, education and decision-making processes, to ensure a positive impact on the lives. I felt that the Youth Panel gives me an opportunity to represent them. This collaboration allows me to air out my views as a young person with disability. ‘Nothing For Us Without Us’ is truly valued.”
Daphne: “Our organization is dedicated to making the world a better place for children and young people with disabilities. So it is of utmost importance that we hear their voices before we create a program or make a decision. The Youth Panel is a great first step towards assuring that young people with disabilities participate meaningfully within our organisation. As an ‘adult’ I am happy to provide a platform for young people to do so!”
So far, what have you learned from your fellow panel members?
Joyce: “I was surprised by their zeal to learn, advocate and transform the way of living of people with disabilities. I learned to understand disability in various perspectives due to their diverse ideas and views. This will help me to use different ways advocating for inclusion. I would describe our collaboration as inclusive, empowering, and transformative.”
Rahel: “I am inspired by their resilience, commitment, and passion for creating positive change. Working with others has strengthened my understanding of different perspectives and approaches to inclusion. I have learned a lot about the value of collaboration, diversity and mutual respect.”
Daphne: “I fully agree with Rahel and Joyce. It is amazing to see how open the Youth Panel is. Their advice shows us clearly where we can still be more inclusive in our programs, tools and projects. I also learned the importance of self-advocacy and how small changes can make a huge difference when we are designing programs that are meaningful for youth with disabilities.”
When do you feel truly heard and that this collaboration makes a real difference?
Joyce: “When my views are noted, respected and taken into consideration during decision making processes, I especially feel heard. When our ideas drive to positive change, that will truly indicate that our voices are important.”
Rahel: “I feel heard when my contributions are acknowledged, respected, and reflected in actions. When our ideas are reflected in real decisions and actions, it will show me that our voices are being taken seriously and contributing to meaningful change.”
Daphne: “We try to make certain that any colleague that is asking the Youth Panel for advice also reports back to the panel on what they have done with the advice. Even if the inputs have not been used, we ask them to provide a reason for that. So far, most of our colleagues were able to use the advice to make their tools or projects more inclusive for young people with a disability.”
What can we do as an organization to make you feel truly involved?
Rahel: “Ensuring accessibility, clear communication and meaningful participation in decision-making processes will strengthen involvement.”
Joyce: “I feel truly involved when there is clear communication, given an opportunity to participate in decision making platforms and given feedback of certain discussions.”
What would Liliane Fonds be missing without the panel?
Rahel: “Ultimately, it would lack the ‘Nothing About Us Without Us’ approach, which is essential for a truly inclusive and meaningful disability movement. It would lack authentic representation and effective ways to include and reflect the voices of youth with disabilities in its work.”
Joyce: “Without the Panel, Liliane Fonds would lack real life experiences of people with disabilities as well as true representation, perspectives and reflection of young voices of persons with disabilities. We as a panel can help Liliane Fonds to come out with effective solutions which drive to positive change and inclusion.”
Daphne: “I could not agree more, Rahel and Joyce!”
Can you give an example of a barrier that you experience in your daily life?
Joyce: “A barrier that I am experiencing is that I don’t have access to certain information that is given in print, which I can’t access on my own without an assistant. Braille material is very rare to find, especially in hospitals, clinics and shops. So I find it difficult to find prices and important information.”
Rahel: “One barrier I experience in my daily life is communication access. As a deaf person, it can be difficult when information is not provided in sign language or with proper interpretation. For example, during meetings, trainings, or public services, there are often no sign language interpreters available, or the interpretation is limited. This makes it challenging to fully understand, participate, and contribute equally.”
Daphne: “As a person who is neurodivergent1, I sometimes run into the stigma around people with mental health issues. It has happened multiple times that when I discuss my symptoms with a doctor during medical check-ups they assume that my symptoms are caused by stress. Of course this can be true, however, it would be nice to first see if there is something physically wrong before assuming it is related to my mental health.”
What would be your ultimate success for this panel?
Joyce: “If it would lead to a society where inclusion is highly valued and exclusion is a crime. I hope the panel with lead to equal access and opportunities for all people with disabilities.”
Daphne: “The Youth Panel is a step towards more inclusive programming within Liliane Fonds. We’re contributing towards achieving full inclusion and equal opportunities for all young people. I also hope we can give something valuable back to our youth panellists, apart from the stipend they receive for their work. Whether this is networking opportunities, a sense of empowerment, career development or further strengthening of skills.”
Rahel: “For me, ultimate success would be achieving full inclusion and equal opportunities for all young people with disabilities. A long-term change where inclusion is fully integrated into all programs across society. Real change starts with listening, inclusion and action.”
Meet the other Youth Panel members
In action
From participation to advocacy
Earlier this year, The Youth Panel shared recommendations with the Commission on the Status of Women (CSW) in New York, calling for better access to justice and equal rights for women and girls with disabilities.
