A Brief History of the Sibling Movement

These are remarks given by Don Meyer (director of the Sibling Support Project) on June 24, 2017 in Hartford, Connecticut during a toast to the tenth anniversary of the Sibling Leadership Network.

I have been asked to share a few words about the history of the sibling movement. I am excited about doing so, but also honestly nervous. The topic is vast, the contributions are many, and my time is limited. I fear I will miss important events and not acknowledge everyone deserving of acknowledgement. I beg your forgiveness in advance!

Knowing when to signify the start of the “sibling movement” is somewhat tricky as siblings with and without disabilities have been in each other’s lives a lot during the past 200 thousand years that we homo sapiens have been here on earth.

But for me, the modern sibling movement began almost one hundred years ago–on September 13, 1918–when Rosemary Kennedy was born to Joseph and Rose Kennedy. Rosemary Kennedy–who was born with an intellectual disability–died at age 86 in January of 2005.

At Rosemary’s funeral, her sister Eunice Kennedy Shriver said:

“After Rosemary moved to Wisconsin, Mother and Dad and all of my brothers and sisters wondered how we could support her. But what we didn’t realize is that Rosemary would begin a lifetime of supporting us.

“It was because of Rosemary that we decided to focus the foundation we created to honor Joe Jr.–the Joseph P. Kennedy, Jr. Foundation–on persons with special needs.”

Mrs. Shriver continued, “Jack (President John F. Kennedy) launched great federal efforts, including The National Institute of Child Health and Human Development, The President’s Committee for People with Intellectual Disabilities and The University Centers on Disabilities. Brother Bobby (Senator Robert F. Kennedy) worked to close Willowbrook. Teddy (Senator Edward M. Kennedy) spent 40 years changing the laws of the land to help people with disabilities. Jean Kennedy Smith created Very Special Arts—now known simply as VSA. And of course, Special Olympics (created by Eunice Kennedy Shriver) came into being.”

Mrs. Shriver concluded, “Rosie’s spirit even inspired the third generation of Kennedys with Best Buddies. We all honored her, supported her, and did what we could.”

It is no exaggeration to note that services for people with disabilities in the United States–and indeed the world—would not be the same had it not been for the advocacy of the five remarkable siblings of Rosemary Kennedy: Eunice, Jack, Bobby, Jean, and Teddy.

Bottom line: Never underestimate the power of a sibling’s devotion.

Every day–in every state, province and country—millions of brothers and sisters do what needs to be done to give their siblings who have disabilities a dignified life.  Their devotion and their efforts will never be as well-known as the Kennedy siblings’ but their accomplishments are every bit as remarkable.

While the Kennedy siblings were creating their legacy, there were others—beginning in the early 80s–who began to publicly acknowledge the important role siblings play and the impact that a disability has on all family members—including brothers and sisters.

Our friend Tom Fish first became interested in sibling issues shortly after arriving at the Ohio State’s Nisonger Center in 1979. In the following year, Tom and Liz Fitzgerald ran their first group for sibs. Over the next 30 years, Tom and his grad students ran as many as 40 six-week groups. During the past 6 years, Tom and his colleagues have focused on an effort called Sibs Looking Forward which are weekend retreats for transition-aged youth with disabilities and one or more of their siblings.

Tom soon began publishing about sibling issues. Long before I met Tom, I frequently quoted his 1980 paper that revealed that 90% of the adolescent sibs he worked with lacked and awareness and understanding of future plans for their brothers and sisters. He wrote these kids had varying degrees of anxiety regarding how their sibs with disabilities would be cared for and what their role would be in that care.

As many of you know, Tom and colleagues started what later became Ohio SIBS 19 years ago. This coming November will mark their 17th statewide conference. Tom would want you to know he did not do this alone! In the early days of the conference, he was assisted by students. With the creation Ohio SIBS as a nonprofit 9 years ago, Ohio SIBS leaders—including Barb Sapharas and Sarah Hall—have made enormous contributions to the United States’ longest-running sibling conference.

Also in the early 80s, Dr. Jack Gorelick, then Associate Director of AHRC New York City had the foresight to understand that siblings of people with disabilities were confronting many difficult decisions as to what role they should and would have in the lives of their brothers and sisters.

Many siblings had parents who were aging, and they themselves were emerging as adults seeking to develop families and careers of their own. What responsibility did they have to their brothers and sisters? Their families had given birth to a child with a disability during the 1940’s and 1950’s at a time when the knowledge, support, resources and stigma were very different from today. Many siblings spoke to Jack about their concerns: guilt, anger, fear, anxiety, responsibility, worry, frustration, and love that infused their day-to-day experience.

Jack acknowledged these sibs’ concerns and had them speak at conferences and meetings to educate others to the needs, desires and experiences of siblings.

In the early 1980s, Jack Gorelick, Marilyn Jaffe-Ruiz (also a sibling pioneer and one of the authors of the SLN’s Sibling Survival Guide) and others began offering ongoing Sunday afternoon adult sibling groups at AHRC.

According to Marilyn, some AHRC board members were uncomfortable with siblings getting together and felt that by doing so it would “stir the hornet’s nest” by discussing things better left unsaid. Ultimately, Jack and colleagues created a standing Sibling Committee, hired a sibling coordinator, held one of the biggest sibling conferences I have ever attended, and ultimately began offering Sibshops for young siblings.

And speaking of Sibshops, it was in 1982–35 years ago–that they were first offered at the University of Washington’s Experimental Education Unit. There are now 350 Sibshops in almost every state, most Canadian provinces and in eight additional countries. Most Sibshops are for sibs of kids with developmental disabilities, but there are Sibshops for sibs of kids with health concerns, mental health concerns and even bio sibs in families where there are foster children and for sibs of kids involved in juvenile justice programs.

Along the way, I’ve met people who are my heroes—People like Tina Prochaska who has been offering Sibshops in Knoxville, Tennessee for over 20 years. And Harriet Redman, whose fierce mother’s love inspired her to create Sibshops for young sibs and events for adult sibs in Appleton, Wisconsin and beyond through the creation of Wisconsibs. Also on my hero list are the rest of the Sibshop providers who give up their Thursday nights or Saturday afternoons because they think young sibs are worthy of everyone’s time and attention.

The Sibling Support Project was founded in 1990—27 years ago. Besides offering training and technical assistance on Sibshops, we published seven books, developed curricular materials, presented in every state, ran Seattle area adult sibling groups and did our best to connect sibs with their peers from around the world.

In 1996, we utilized this emerging internet thing to create SibNet. First as a listserv, then as a Yahoo group, and currently as a closed Facebook group of 3500 members, SibNet has provided a nonjudgmental, come-as-you-are forum for adult sibs for over twenty years.  Along the way, we’ve also tried to help connect with their sibs with:

  • SibKids, a Yahoo group founded in 2001. (It was on SibKids that I first met Ariella Meltzer when she was a mere 14 years old.)
  • SibTeen, a Facebook group created in 2011 which we cohost with Kate Strohm of Siblings Australia and which has 600 members.
  • Sib20—for twenty-something sibs–was created in 2015 with 350 members

The Sibling Support Project now hosts SibNet in proud partnership with the Sibling Leadership Network.

And speaking of the Sibling Leadership Network:

SLN was founded by Tamar Heller and her then-students John Kramer and Katie Arnold in 2007. I am grateful to Tamar for her willingness to nurture the SLN, especially during the early years. Without her help, we might not be here. Tom Fish was also a founding member and Tamar says I was as well. All I remember was how excited I was to hear about this needed initiative.

In 2007 the SLN held its first national conference in Washington, DC. Subsequent SLN national conferences were held in Columbus in 2008; Greenwich, Connecticut in 2010; Pittsburgh in 2013; and Louisville, Kentucky in 2015.

In 2008 SLN published a policy whitepaper with recommendations for research, advocacy, and supports related to siblings.

The first official Board of Directors was created for the SLN in 2009.

In the years that followed, SLN stayed busy with chapter development, building partnerships, and committee work.

Then in 2012 the SLN hired our dear leader Katie Arnold as the SLN’s first Executive Director.

In 2014 SLN officially became a 501 c 3 tax-exempt organization and developed the Sibling Advocacy Toolkit to help siblings become effective policy advocates.

In 2015 the Sibling Survival Guide was published by Woodbine House, with SLN members contributing chapters and all proceeds going to support the work of the SLN.

Last year, the SLN advocated to include siblings in the Family and Medical Leave Act (FMLA) and SLN members worked with the Department of Labor as they updated their Federal guidance factsheet to specify that siblings can be included in the “in loco parentis” provision.

These are just a few of the SLN’s remarkable achievements. In ten short years, the Sibling Leadership Network has become the indispensable voice representing sibling issues with policymakers and leaders in the disability community.

For too long, siblings have been left in the waiting rooms of the service delivery system. No longer. With chapters in 25 states, the SLN is becoming the voice of the family member who will have the longest-lasting relationship with people with disabilities. In doing so, our organization is giving millions of brothers and sisters the seat at the table they richly deserve.

I’d like to lift a glass to toast the SLN for ten years of remarkable accomplishments. Congratulations—and here’s to the next ten!

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3 Responses to A Brief History of the Sibling Movement

  1. Mary Mchugh says:

    You have helped millions of people all over the world with your work at Sibnet, Don. Such loving work. Thank you.

  2. Pam Layne says:

    Thank you so much to Don and everyone at SLN for your work on our behalf. I was moved to tears reading of the first sibling meetings being feared as possibly “‘stir[ring] the hornet’s nest’ by discussing things better left unsaid”. Thank you for saying what must be said, for creating a space for us, for nurturing an ongoing discussion and support system for those of us who are so often overlooked. Thank you.

  3. John Sullivan says:

    Thank you Don for such a moving toast. I sometimes wonder if my efforts as a sib are effective or consequential. Thank you for helping us see that we are part of a heroic struggle of working for a more humane and caring world.