INCLUDEnyc Online Panel Grows Community for Siblings of People with Disabilities

New York, NY, April 16, 2021—INCLUDEnyc hosted a symposium featuring siblings of people with disabilities on Sunday, April 11. The conversation discussed themes of sibling responsibilities from a young age, how parents could better support siblings in this caretaker role, and steps to prepare for the future. 

“Siblings of individuals with disabilities, especially during this pandemic, are met with unique challenges and experiences as siblings, supporters, and caretakers,” said Jane Heaphy, INCLUDEnyc Deputy Director, who kicked off the event. INCLUDEnyc’s annual citywide symposium, which focuses on a particular interest within the disability community, convenes leading experts to share their knowledge and engage in conversation with young people with disabilities, their families, and professionals. 

Don Meyer, founder of the Sibling Support Project and panel moderator, stressed that family-centered services must include siblings as well. “When we validate and support siblings in childhood, sibs remain lovingly involved when their parents are no longer able to serve as primary caretakers,” Don explained.

Allan Goldstein, personal experience writer and Disabilities Studies Senior Lecturer at NYU Tandon, spoke about his brother Fred, a Willowbrook survivor, and the significant transition that occurred for both of them when he became his brother’s guardian. “Fred grew up in an environment that offered him no choices. Together, we worked on his independence. Fred could make real choices, including where he wanted to live.”

Shawnnita Buckner, Vice Chair of the Sibling Leadership Network, looked towards the future and how becoming the primary caretaker would affect family dynamics. “I’ve been taking care of my brother Jay since I was 13 years old, but he’s always lived with my mother. As my mother ages, I have to consider what it will be like to be a mother to my children, a wife, and my brother’s primary caretaker.”

New York-based filmmaker Liz Sargent also touched upon themes of “balancing it all,” as her siblings and parents grow older. Sargent, who is creating a documentary on the topic, shared the critical role of a supportive sibling community in her life. “I’m the middle child of 11, where four children were adopted and some have disabilities. Sibling communities in New York help me process and share these experiences.”

Lindsay Hyland, special education teacher, has spent a lot of time building and facilitating those kinds of supportive communities. “My sister Jullia has a developmental disability and as I grew older, I wanted to prepare and know more about her care, programs, and supports. I became more involved in the AHRC Sibling Committee and SibsNY, the New York State chapter of the Sibling Leadership Network,” she shared.

The panel event was followed by an exclusive discussion, “Finding Sibling Support.” Emily Holl of The Sibling Support Project and Lindsay Hyland discussed the Sibshop program, a model used to create sibling support groups globally, as well as how to access support communities online. These groups speak to many different community needs and types of disabilities. All are welcome. View recording here.

For sibling resources, view our program and panelist contact information in English and Spanish. For additional sibling support questions, reach out to the INCLUDEnyc Help Line at https://www.includenyc.org/resource-line.