One of the great things about doing so much driving this summer is that we have a lot of time to debrief after interviews.
A few weeks into our project, we began to notice different trends among siblings. One of these trends is that the experiences and narratives of sibs of someone with Down Syndrome tended to be more positive overall than other interviews. We weren’t sure if it was just something related to the people we had spoken with, but as we’ve spoken with more and more people familiar with research on sibs, we have learned about something that is called the “Down Syndrome advantage”.
Below is a clip of Meghan, a post-doc at University of Illinois – Chicago who does some research on sibs and families of individuals with disabilities, explaining the “Down Syndrome advantage”.
The “cute” factor of Down Syndrome often works in advantage of younger people with Down Syndrome. But then the question remains, is that “cute” factor still an advantage when individuals grow older?
In Chicago we also interviewed Alison, who is interning at Access Living for the summer, about her sister with Down Syndrome. Though she has a great relationship with her sister, Mary Grace, and has many positive memories, Alison shared some of the challenges that may occur from having a sibling with Down Syndrome.
Someone had mentioned to us that while they’re young, it’s easy to consider people with Down Syndrome “cute”. Mary Grace is still young, so sometimes it’s easy for Alison to explain certain things that Mary Grace can’t do by telling her that she isn’t old enough yet. Mary Grace really wants to start driving, but her family is unsure that she will ever be capable of doing so. For right now, though, it’s easy to tell Mary Grace she can’t because she’s still young.
Another challenge that can occur is related to how high-functioning an individual is. Alison explained to us that Mary Grace has a naturally high IQ for someone with Down Syndrome and that she is very high functioning. Alison struggles with that though because she is often afraid that Mary Grace is aware of her differences. Sometimes she wishes Mary Grace were lower functioning so she would be spared the pain of knowing her differences.
While sharing some good memories she has of her family, it remains clear that there are challenges related to having a sibling with a disability.
Although Down Syndrome is more present in the media and is better understood and accepted within communities, Alison is still concerned about making sure her sister receives the proper services and protection. She worries a lot about whether or not the disability community will be able to receive the protection and benefits that are necessary because often individuals with disabilities don’t have a voice to fight with. “I feel like it’s so unfair that my sister can’t even fight for her rights.”
She considers herself fairly religious, but these feelings have made her question the existence of God, thinking, “There’s no way God could exist if he created people that can’t protect themselves or help themselves.”
“While it’s taken too long for people who are gay or of a certain race or gender to get their rights, they have a voice”, they can fight.
Through our interviews and the research we’ve learned about, we realized there is a noticeable “Down Syndrome advantage.” Despite the challenges and complications sibs experience, in general, sibs of individuals with Down Syndrome have more positive experiences and feelings about their family dynamic.