A lot of celebrating was going on at Camp Jabberwocky last Tuesday evening. First and foremost, it was Cy Brigish’s surprise 50th birthday celebration — and that of being a Jabberwocky camper for 40 joy-filled years. It was also a day to recognize the publication of “Joyce’s Way: Finding Normality Despite Disability,” which celebrates Cy’s mother, Joyce Brigish, as she brought Cy up with high expectations, exceptional patience, and fortitude despite the prevailing way children with Down syndrome were treated at the time.
Alan Brigish, Cy’s father, said that “this book came about because when Joyce knew she only had months to live, she followed our son Hal’s suggestion to somehow get all that she had learned and put into practice with our son Cy down into writing.” Whether you knew Cy or not, by the end of the celebration everyone’s heart was open. He was outwardly emotional, telling his dad that he loved him as he gave him a huge hug, after which his dad led the crowd in a rousing rendition of “Happy Birthday.”
Joyce’s way of bringing Cy up was the antithesis of the standard practice of the day for children with Down syndrome, which was institutionalization. Alan and Joyce didn’t hesitate in keeping Cy within the bosom of their family, which eventually grew to include his siblings Hal and Jackie, as well as extended family and close friends. Before leaving the stage at Jabberwocky, Alan introduced the author of the book, Susan Klein. The book couldn’t reinforce more clearly the idea that it takes a village to raise a child.
“Joyce’s Way” chronicles mother and son’s journey from Cy’s birth to Joyce’s death. Klein explains, “It is about a family, which through offering their son who was born with Down syndrome the opportunity to reach his potential socially, educationally, and spiritually, became advocates for all people — not just people with disabilities. It turns out that when part of what your work is is to blend communities, that means that everyone, with apparent disabilities or not, actually grows and learns.”
Klein reveals, through brief digestible chapters, a remarkable woman who fought for, as the subtitle indicates, “finding normality despite disability.” From Cy’s babyhood on, Joyce held him to high standards, helping him learn how to speak, interact socially, read, write, work, and eventually live independently.
Cy has an indelible presence, and Klein conveys his humor, sensitivity, and lust for life throughout the book. Early on she introduces us to Cy: “Cy arrived 50 years ago, a child with Down syndrome, many additional disabilities, and a future of medical procedures and complication that would bring the most stoic beings to their knees. But his natural gifts, his consistent social training, his mother’s adamant persistence in the advocacy of the inclusion of people with disabilities in family life, recreation, education, and community, along with a grand dose of shared love, have created a man with whom it is a delight to associate.”
Klein, who is, among other things, a professional itinerant storyteller, spoke tenderly about Cy and Joyce’s relationship. “It was an awareness of each other. They just always knew where the other one was. They were deeply affectionate. The two of them would quite often be together. They would hug each other or sit next to one another. It was an amazing bond. Something you just don’t see every day, no matter who it is. There was always plenty of conversation between the two of them, but when there was none, you sensed that it was still happening … And he was mischievous as a little one. You can see it in the photographs. Alan caught the look on his face so well. He always looked like he was up to something.” Alan’s photographs of events, family, and friends pepper the chapters and underscore the immediacy of the prose.
While Cy was always included in all family activities just like his siblings, Joyce also stressed social protocol, table manners, phone etiquette, good hygiene, and impeccable manners. He was also expected to pull his weight doing chores. Just as she did with Cy, Joyce encouraged the children she worked with in the Connecticut Special Olympics as part of CLASP (Community League Advocates for Special People) to try new experiences, while being adept at setting parameters. As the swim team coach, she taught them and expected proper pool and locker room etiquette. Later she ran CLASP for many years, broadening their horizons with trips to the theater in New York City, to Disney World, museums, and on cruises, and involving them in the greater community. When the age range of the members continued to expand, Joyce knew it was time to create a group for adults. So she left CLASP in 1999 and created YAG (Young Adult Group) for 21- to 35-year-olds, and took them on trips to Club Med and other recreational activities.
When asked what she wants readers to walk away with, Klein immediately responds, “That’s not up to me. When a writer writes what is as close to the truth as she knows and does the job well, then it will resonate, there will be something within the trajectory of the story that will resonate with someone’s personal experience. My job is to tell the story as best and effectively as I can.”
“Joyce’s Way” takes our hand and leads us through a deeply personal journey, one that eventually ended up on Martha’s Vineyard, permanently for Joyce and Alan when they moved here in 2000, and while Cy lives independently in Connecticut, he continues to come to Camp Jabberwocky every summer, just as he has since he was 10 years old.
“Joyce’s Way: Finding Normality Despite Disability,” by Susan Klein, brigishEYEproductions. Available at Cronig’s Market and Bunch of Grapes in Vineyard Haven. Also available online at jabberwocky.formstack.com for a suggested donation of $30 plus $5 shipping and handling. One hundred percent of proceeds of direct sales go to Camp Jabberwocky’s 2018 capital campaign. Contributions over $30 per book may be eligible for a tax deduction.