ONCE UPON A GENE - EPISODE 013
On the topic of siblings again this week, we'll be talking about the sibling perspective and the support available with Emily Holl, the Director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, training, and groups for siblings, families, and individuals with disabilities. She has presented and written extensively on sibling issues, has conducted and published sibling research, and has facilitated Sibshops for young brothers and sisters of children with disabilities.
Tell us about how the Universe brought you to the world of sibling support.
The short answer is that I myself am a sibling and I have an older brother, Peter, who has an intellectual disability. He really is at the center of many personal and professional decisions and I'm really grateful to him because if it weren't for him, I wouldn't be doing this work that I love so much. I wouldn't have met so many other incredible siblings who have a lot of insight and wisdom to share.
Did you join a sib shop when you were young?
I travel a lot and have the pleasure of meeting so many other adult siblings. I echo their same sentiment that I wish there were Sibshops when I was a kid. I didn't discover Sibshops until much later when I was a young-ish professional working in the disability field. A colleague of mine found Sibshop facilitator training by Don Myer and thought it would be a good idea for us to attend. I attended that training and it really changed my life because I not only realized there's a whole organization dedicated to supporting brothers and sisters like myself, but through that training I was able to understand my own sibling experience in a much broader context. I recognized that my experience shared so many elements with other brothers and sisters and from that point on it really inspired me to do everything I could to create sibling support for the families we were working with.
I haven't imagined my child as an adult not knowing what to do if they had to take over.
Especially as parents with young children, it can be daunting to consider the future and consider a time in the family's life when we as parents are no longer able to care for our children in the way we traditionally have. For the best reasons and with the best intentions, parents often don't share information with their typically developing children. We always encourage parents, even of young children, to keep that door of communication open so that when the time does come to talk about future planning, it's not uncharted territory, not a taboo subject undiscussed by the family. Even if parents don't have answers, communication can go a really long way. They may not want to burden typical developing children with thoughts of future caregiving, but siblings are already thinking about the future. Making that an okay topic to discuss is an important way for parents to support siblings.
What do you do now with Sibshops?
Don Myer retired and there was a national search for this position and I was the very lucky person honored to be offered the position. We moved from New York City to Seattle where the Sibling Support Project was founded in 1990. There's a long history of self and parent advocacy in the United States and we have them to thank for the creation of the disability services and supports that exist today and for many of the laws that reinforce them. As it turns out, there's also a lesser known history of sibling advocacy and sibling support and that really starts with Don Myer who started the Sibling Support Project. Don created a Sibshop which is central to the work we do today and to the support that thousands of siblings receive across the country and around the world. Fundamental to the Sibshop model is provi