Our first day in Chicago, we were lucky enough to meet with the Queen, or at least that’s what her seven other siblings refer to her as they call her older sister, the Royal G-ddess. Nora Handler is a sibling of three brothers, all of whom have developmental disabilities. She is an avid member of SibNet, on the board of SIBS, speaks on many different sibling and disabilities panels, and is a published author. Needless to say, she had a lot to talk about. Something we found particularly intriguing about her story was the fact that she found sibling resources considerably late in life. She and her older sister only really got involved with the sibling support world after their mother died, just a little over a decade ago. “We consider ourselves, our family, the poster child for how not to do it, as far as future planning goes, because it wasn’t done.” She told us that she got so involved in this community because of one key lesson that she can teach other sibs. “I go around and tell this story so that other people will... get up the nerve and have this conversation with their family that they need to have,” because she and her other siblings did not have future-planning conversations until it was too late.
After their mother passed away at a young age, she and her older sister really took on the caregiver roles of the family. For the first six months, she and her sister would take turns driving hours away to stay at their mom’s old farmhouse where all of their brothers were residing. They, along with help from their other siblings, really worked together to begin the care taking process.
Nora also spoke with us about the differences between a parental role of someone with special needs and a sibling caretaker role. She said that she and her sister were much more “able to let them take the risks that [their] mom was never able to let them take.” And, with the help of her husband, they began taking their brothers out more often, like to baseball games. “We think sibs will do that dignity-of-risk thing a little bit” more than moms will just because of the sibling dynamic. Though she and her sister “feel like moms,” she does recognize that there is a difference in her caretaking style from that of her mother’s.
In this next clip, Nora talks about how her family was not the “picture perfect” family and how hard that was for her after her mom passed.
Next, she talks about how hard it is to find other sibs, especially in times of need.
Here, she describes what she would have liked to have had before she had taken on this caretaker role.
That being said, it was clear to us that Nora loves what she does for the sib and disability communities right now. Though she relayed to us that humor is absolutely her coping mechanism for the hard parts in her (her words) “warped” family, braving past those difficulties to help this community find its words has helped a tremendous amount of people who have listened to her story. “It’s what I wish I could do as a job,” she told us. We wish that, too, Nora!