Leaders of the global inclusion movement, many of them parents of children with intellectual disabilities, shared deeply personal stories of struggle and resilience to demand greater visibility, stronger support systems, and genuine opportunities for participation. Speaking at the World Congress 2025 ‘We Are Inclusion’, they underscored how lived experience drives advocacy for a more inclusive future and called for better tools and tailored assistance to ensure no one is left behind.

During the session “Not left behind: building inclusive futures for people with intellectual disability who have high support needs and complex communication challenges,” Sue Swenson, President of Inclusion International, opened the discussion by recalling her late son Charlie, who had profound disabilities. She reflected on how inclusion, even in its simplest form, made a difference in his life.

“Charlie was often segregated at school, but I remember asking teachers to include him in story time. That small act of inclusion mattered,” she said. “To make a real difference, we must ensure that people with disabilities are truly present and that their voices are heard.”

Stephanie Gotlib, Executive Director of Government Relations and Advocacy at All Means All, described the journey of her son Adam, who has autism and an intellectual disability. “Adam’s early years in kindergarten were positive. He was included, valued, and had the support he needed. But when he entered the special school system, he struggled, was not challenged, and became almost depressed,” she said.

Gotlib explained how transferring Adam to a mainstream school transformed his prospects. “Inclusion allowed him to reach his potential. Today, Adam still lives at home but is an active citizen who volunteers and contributes meaningfully to his community. With strong family advocacy and system support, Adam is in a good place. But his story is not typical. We must raise awareness about people with complex needs, ensure their voices are heard, and include them in decision-making.”

Adding a European perspective, Jeanne Nicklas-Faust, Managing Director of Bundesvereinigung Lebenshilfe E.V., spoke about her daughter Eva, who has Angelman syndrome. “The first years of Eva’s life were extremely difficult, with constant hospital visits, but against the odds, she learned to walk at the age of eight. She cannot speak and needs support in every aspect of daily life, yet today she is 34, lives independently, and visits us on weekends. People with complex needs must be included in advocacy work, and parents and families must mobilise, because without our voices no one will truly understand or act.”

Jyrki Pinomaa, Co-opted Officer at Inclusion International and father to two sons with multiple disabilities, stressed the diversity of experiences within the movement. “We have to remember that people with intellectual disabilities are not all the same, they are individuals with different needs and ways of expressing themselves. Not all self-advocates can speak for themselves, which is why the voices of families remain essential. Even if our sons cannot express their thoughts in words, they find ways to connect, and we must continue to listen and learn from them.”

From Latin America, Argentine lawyer Elena Dal Bo spoke of her son Juan, who has cerebral palsy. She recalled the absence of support services when he was growing up and the rejection he faced. “Society did not accept Juan, and even special schools rejected him,” she said. “Families like ours need personal assistance and tailored support.”

Juan himself sent a message to the Congress, challenging perceptions: “Too often we are treated as less than human because we do not communicate in the same way as others. We are human, and our voices must be heard and included in decision-making.”