Anna, from Montpellier, calls her brother Mattéo, who lives in Bordeaux and attends a daytime medical and educational institute (IME), every day. Mattéo, 20 years old, has autism spectrum disorder, ADHD, and learning difficulties. Despite the distance between them, their relationship remains strong, and Anna visits her family every month or every two months, sometimes for longer holidays. Between these visits, the phone allows them to share the small events of daily life and respond to her brother's anxieties. "There is a form of permanent availability," she explains. "And then, indeed, you have to be ready to manage remotely if he calls and cries, things like that." This presence, sometimes discreet, plays an important role in supporting people with disabilities.
In a study conducted by Unapei, which surveyed 2,294 adult siblings and included 21 in-depth interviews, 59% of respondents mentioned providing emotional and moral support to their loved ones with disabilities. This responsibility is often felt from childhood. Anna and Mattéo are ten years apart in age. Very early on, the older sister took on a protective role, reinforced by her brother's early difficulties and the years needed to understand his disorders. "I have always had this role of being in care, being in protection and also being worried, understanding," she says. From this period, she remembers in particular a sentence written in her diary: "My brother is disabled." She was then in middle school. "I remember writing this sentence and being overwhelmed."
With the years, her perspective has evolved. But she remembers the loneliness she felt facing a reality she spoke little about with her friends: "I thought there was something on my shoulders that none of my friends had on their shoulders. No one knows what it is." Anna's experience reflects the complex emotions and responsibilities that often accompany being a sibling to someone with disabilities. While the bond between siblings can be deeply rewarding, it can also bring unique challenges, especially when one sibling has significant needs. Anna's story highlights the emotional labor and the shifting dynamics that come with such a role, from childhood through adulthood.
Sibling Support for Adults with Disabilities Highlighted in Study
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