When we were in New York City, we had the pleasure of conducting our first-ever group interview. The women that we interviewed were all members of a group called SibsNY, essentially an organization formed by sibs, for sibs that tries to connect sibs to one another and provide them the support and advice that they might need.
Here’s a short profile of each of our interviewees:
Lindsay: a math teacher from Staten Island, part of a family of four, with a younger sister named Julia with microcephalia (a condition where the baby’s brain stops growing while in utero) which has led her to have pretty severe impairments throughout her life. Lindsay’s sister is currently in a day program and community residence on Staten Island.
Cecelia: also one of four, with a younger brother with Cerebral Palsy and a developmental disability. Has two older sisters but both of them are much less involved than she is with her brother. Brother currently lives at home with her mom who is now 90. The brother’s disability was always kept very hush hush, even within the family.
Mary*: also one of four(!),has an older brother, a younger sister and a younger brother. Currently a child psychiatrist in NY. Older brother was never formally diagnosed with anything but has mild to moderate cognitive deficits, social deficits and is emotionally immature as well. Brother has married twice and currently has three children.
*Name has been changed.
**Because not all of the women were comfortable with video recording, this blog post will be spliced in with audio recordings rather than video.
When asked to describe their relationships with their sibling, the women had very different responses for us. Lindsay described how despite the fact that Julia doesn’t call Lindsay or sister and can’t verbalize her feelings towards her, she knows that their relationship is valued and special by the way Julia lights up when Lindsay walks into her program.
Cecelia struggled more with this question. Because her parents were so set on the idea that having Bobby as a brother should not influence their quality of life, the siblings often left him behind in order to lead their own lives. Cecelia recently realized how detrimental an effect this had on Bobby and has since thrown herself wholeheartedly into improving Bobby’s self-esteem and emotional health. Listen here for her depiction of her family life:
The quality that most influenced Mary’s relationship was the sheer intensity of that bond. Because she was born immediately after her brother Mike*, the direct comparison between the two of them was inevitable. While Mike was floundering a bit academically and socially, Mary was valedictorian, held many leadership roles and always felt that she needed to be the “reliable one” or the “one who could get things done”.
What was so fun about this interview for me is that it truly was a conversation among sibs instead of a more structured interview. One of us would pose a question and then the sibs would take it in whatever direction they wished, bouncing off one another’s ideas. One place where there seemed to be a lot of common ground was when we asked the sibs what was valuable about having a sibling with special needs. While each sib struggled to delineate what was caused by being a sib as opposed to just their personality, they all mentioned that they believe that being a sib had made them more compassionate. Each woman added their own personal qualities that they attributed to their experience as a sibling as well:
Finally, I want to leave y’all with something that Mary said. She spoke beautifully about how sometimes what a sib wants most is to be seen outside their role as a sib.
Bringing sibs together to share their experiences with one another was always one of my goals for this project. Getting to watch that connection happen right in front of us was inspiring, thought-provoking, and gave us even more fuel for our sib-fire.