A close emotional support system and a personal connection between siblings and their families are essential to provide the necessary sustenance for a child with an intellectual disability, noted participants at a session titled “Siblings as Leaders in the Family” at the World Congress 2025 ‘We Are Inclusion’ being held in Expo Centre Sharjah from September 15 to 17, 2025. The global event which was inaugurated by His Highness Sheikh Dr. Sultan bin Mohammed Al Qasimi, Supreme Council Member and Ruler of Sharjah today, September 15, is taking place for the first time in the Middle East and North Africa (MENA).

The session discussed how to support siblings in their role in families, how to get them more involved, and how they can be leaders in the family. Hosted by the Sibling Working Group of Inclusion International, which aims to recognise siblings and give siblings their own space to talk, the session was facilitated by Charlotte Pyke from Inclusive Education Canada and Self-advocate Danny Dickson. Each participant – from countries as far flung as Canada, Japan, Ireland, and Kuwait -- shared their experiences in taking care of a sibling with a disability and how it helped in their own emotional and personal growth over the years.

Dickson, a representative from Inclusion Australia, who has overcome a disability to be an active member of the Sibling Working Group, underscored that “family is precious, and hence one should look after and cherish them”. He noted the importance of forging a bond with siblings since parents may be busy with different things.

In his presentation, Guillaume Giaccino from Ireland shared his experience with his sister, noting that siblings take on diverse roles and responsibilities, and that continuous dialogue remains essential to ensure the best possible support.

Kimber Bialik, who works for Inclusion International as Director of Programmes and Network Development, stated: “Parents want to ensure that the child with an intellectual disability has support and does not end up in an institution. In some cases, the parents do not want to involve the other children.” But she stressed the need to involve siblings in the decision-making of a needy child’s future.

Shabina Bano, an Indian participant, who said she began taking care of her brother with cerebral palsy right from the time she was four years old, added that she had made him an important part of his life and insisted on taking him to all events, be it a wedding or a holiday. She had also made it a point to find a partner who would accept and take care of her sibling.

Fayel Odeny, Co-Chair of the Sibling Working Group, narrated her experience taking care of an older sister with disability in a large Kenyan family. “I rebelled when the responsibility was placed on me. I was a troubled teen and never got to go to any parties or malls. It takes a toll on you.” She noted how she slowly evolved into a support person taking care of not just her sister but a community of such people in need.

The session had the participants break out into two groups to understand their specific challenges and solutions. They discussed what support and long-term planning they need, and also what resources their parents need to involve them in the roles they want to play. The generational gap that sometimes caused conflicts in the care given or the decisions taken and the inclination of some parents not to involve siblings were discussed as was the need to develop a connection between the sibling and their families. The breakout sessions observed that it was often the older, especially a female sibling who had to assume the role of a caregiver. The teams suggested that talking to other parents and adult siblings would be helpful in finding a way forward in caregiving and establishing connections.

At the conclusion of the session, Charlotte Pyke emphasised that many siblings aspire to take on leadership roles that extend beyond the family, reaching into communities and organisations. She also announced upcoming initiatives for 2025, most notably the launch of a global map for sibling organisations, along with the establishment of a framework to ensure their representation in decision-making processes at the level of Inclusion International.

World Congress 2025 "We Are Inclusion" continues in Sharjah until 17 September, bringing together more than 500 participants from 74 countries, including 152 speakers representing 160 organisations, across 59 parallel sessions. Held for the first time in the MENA region and North Africa, the Congress is a leading global platform for sharing best practices and advancing the rights and inclusion of persons with intellectual disabilities. It is co-organised by Sharjah City for Humanitarian Services and Inclusion International, and in strategic partnership with the Sharjah Government Media Bureau.