In this episode of Inclusion Europe Radio, host Elisavet and guests Aoife and Inge explore the experiences of siblings of people with intellectual disabilities, highlighting the challenges of balancing caregiving roles, lack of support, and the emotional impact on families.
01:17 – Growing up as a sibling and carer
Aoife shares her experience growing up as the older sister of Roshin, who has an intellectual disability, autism, and type 1 diabetes. She explains how the lack of community support forced her family to take on all caregiving responsibilities. She emphasizes how families must fight for even basic rights, making daily life exhausting and emotionally draining. Unlike typical siblings, her caring duties intensified over time instead of decreasing.
06:22 – Maintaining a sibling relationship
Despite the caregiving role, Aoife talks about how she and her sister stay connected through daily calls and visits. She hopes Roshin will remain part of her community rather than being isolated in segregated settings. Aoife encourages siblings to seek support for themselves, acknowledging that their experiences are different from their peers. She shares how finding a community of siblings in similar situations helped her feel less alone.
10:27 – How this experience shaped Aoife’s career
Seeing the barriers her sister faced motivated Aoife to work in disability advocacy. She describes how anger at the system turned into a passion for change, leading her to her role at Autism Europe.
12:39 – Inge Volleberg on her relationship with her sister
Inge talks about her close relationship with her sister Esther, who has Down syndrome. Despite moving away for university, they stay connected through regular calls and visits. Inge highlights how most family support is focused on parents, leaving siblings without guidance or emotional assistance. She calls for structured support for siblings, recognising their unique experiences.
16:05 – Facing stigma and discrimination
As a child, Inge didn’t see her family as different until she noticed how society treated them. From bullying to unequal treatment, she recalls how people either discriminated against or overly pitied her sister. Inge describes how siblings of disabled people often feel invisible.
19:15 – Finding a support network
Inge shares how she joined a support group for young caregivers, where she met others in similar situations. This safe space allowed her to talk openly about her experiences without judgment. She advises siblings to be part of important family discussions and push for their own needs to be recognised.
24:35 – How her experience shaped her career
Like Aoife, Inge initially wanted to explore other career options but became frustrated by the lack of inclusion in research. Her passion for disability rights led her to work at Inclusion Europe, where she advocates for policy improvements. Inge explains how her background helps her translate abstract policies into real-life impact. She emphasises celebrating small policy wins while continuing to push for larger systemic change.
Listen to the podcast here.