SPHERE – Celebrating Thirty Years Enhancing the Lives of Adults with Intellectual Disabilities

Celebrating 30 Years of SPHERE. Credits, clockwise from top left:
Celebrating 30 Years of SPHERE. Credits, Jill Edelman Barberie 

SPHERE, a non-profit that provides programming for adults with intellectual disabilities in the Ridgefield, Connecticut area, celebrates its thirtieth anniversary on November 4, 2017. The anniversary provides an opportunity to tell the story of a successful and enduring coming together of families and community to enhance the lives of adults with disabilities, and, in doing so, deepening the purpose and meaning of life for everyone involved.

SPHERE’s story is a complex tale that began in the nineteen sixties and seventies with families whose children were born with cognitive disabilities that relegated them to the margins of childhood life. Two of those families who remain deeply involved with SPHERE today are the Steele family of Christine and Michael Steele and their daughter Jocelyn, born in 1970, and the Moomaw family of Ghislaine and Christopher Moomaw and their son John Andrew, born in 1965. They were amongst a small group of parents who foresaw that if they didn’t act together quickly, their adult children would spend a lifetime alone, in isolation, cut off from social, creative and educational opportunities available to their typical peers. As a result of their foresight, intelligence and community outreach, SPHERE was formed and now serves the needs of over sixty adults with disabilities in the area.

The Moomaws and Steeles agreed to share their personal stories so that families facing similar challenges today can be encouraged and aided by their journeys. Valerie Jensen, SPHERE Chairman of the Board from 2004-2014 and founder of the Prospector Theater in Ridgefield, and current Board Chairman Lori Berisford bring SPHERE’S evolution to present day with personal stories of how they came to SPHERE as volunteers and stayed to take on leadership roles.

In the early 1970’s, Christine and Michael Steele, residing in New Jersey at the time, had their preschool age daughter Jocelyn tested by educational experts who concluded that there was “no hope” for Jocelyn. The only reasonable option was institutionalization. The Steeles refused that option. Instead, the family sought out resources for children with intellectual disabilities. The first ray of hope came from Camp Daisy in East Brunswick, New Jersey, where Jocelyn displayed the ability to learn and play. Later, settling in Ridgefield, Connecticut, the Steeles, inspired by the 1975 Education for All Handicapped Children Act, reached out to local educators Dr. John Phillips and Elliot Landau to create a program for educating students with cognitive disabilities. In 1977, Christine, along with Janie Reeve and Gay Ramabuschanam, founded ROSE, the Ridgefield Organization for Special Education. A calendar of the organization’s events was published weekly in the Ridgefield Press to acquaint the town of the existence of this resource and to introduce the community to the lives of children with special needs in their area.

Until the nineties, “inclusion” for children with disabilities in public schools did not exist, which meant that 95% of children with disabilities in Ridgefield were “outplaced” to an ungraded classroom at the Branchville Elementary School. When Jocelyn was ten years old, the Steeles moved to California for four years where Jocelyn was taught to read and write by a gifted special education teacher, Candy Druckman. In 1984, when the family returned to Ridgefield, Jocelyn attended the middle school for two years and then went on to Ridgefield High School. According to Christine, though Jocelyn had some success at the high school, including being the manager of the cheerleaders, it became apparent that more was needed in the area of life skills. It was decided by Jocelyn’s educational team that Westport’s Staples High School, which had a program in a separate building for local students with special needs, would be the best, if not geographically most desirable, next step. Jocelyn graduated with her Staples class in 1991. During her years at the high school, she joined Special Olympics, becoming a skilled Alpine skier and participated in CLASP of Westport, where the Steeles met other families, the Martins, the Manns and the Walkers amongst them, who would later participate in the development of SPHERE.

By shifting her education to Staples High School, Christine reports, Jocelyn’s “…web of friends and activities was primarily in the Westport area. I took on the task of many commutes several times a week and Saturdays. It was important to us that she had things to enrich her life.” As Jocelyn’s formal education drew to a close, scheduled for June of 1991 when at twenty-one by law, she would “age out” of the school system, the family became increasingly alarmed at the dearth of adult programs in the Ridgefield area. “We were tired…” of the commute and concerned that Jocelyn was facing a future, in many ways, without a future.

Meanwhile, in another corner of Ridgefield, the Moomaw family, who moved to Ridgefield in 1968, was grappling with the challenge of finding educational opportunities for John Andrew. The Moomaw family, like the Steele family, were advised to place John Andrew in an institutional setting. They refused. Instead John Andrew attended preschool at the Early Learning Center, in North Stamford, Connecticut. At the age of eight, John Andrew continued his education at BOCES in New York State where he graduated in 1986 at 21 with a diploma from John Jay High School.

After graduation, the family’s next step, as advised by the Connecticut Department of Social Services, was to place John Andrew in a five-day-a-week sheltered workshop run by DATAHR (known today as Ability Beyond). Several months into the program, the family decided that this was not a good fit and scrambled to find activities to fill the void. Fortunately, Ghislaine had heard of Pegasus, a therapeutic equestrian program still active in the lives of SPHERE members today, which was a “godsend.” John Andrew rode for many years, was able to socialize, and attends the annual horse show each Spring. He rode until he became too large for their horses. After being diagnosed with Juvenile Rheumatoid Arthritis, his mom reports, “I became his day program, doing his physical therapy with monthly visits to Yale-New Haven Hospital and the New Haven museums.” Ghislaine, an artist, and Christopher, an architect, were committed to the arts and made sure that John Andrew was exposed to that world. To this day, the fruits of that effort show up weekly at SPHERE art class where John Andrew works steadily and skillfully with materials and color. John Andrew was gifted with musical ability and his family arranged for guitar and voice lessons. His musical talents are frequently on view at many of SPHERE’S performances today. 

Upon leaving the DATAHR program, and with the aid of Education Connection, Ghislaine found work for John Andrew at the local Stop and Shop collecting carts, which he did for thirteen years until the day he returned home and announced, “I don’t want to work outside anymore.” Meaningful employment, which years later became the primary motivation for Valerie Jensen’s founding of the Prospector Theater, had brought John Andrew into contact with his community and gave him a sense of accomplishment. Leaving Stop and Shop would have meant isolation.

Once again, Ghislaine looked for a job for John Andrew, which eventually led to his current position at the local CVS. Everything was a challenge, everything a search for a good fit. Sadly, the family lost their younger son in 1981, which created a giant hole for everyone and robbed John Andrew of the stimulation from his brother’s companionship and interactions with his brother’s friends. This added to his isolation and his dependence on his parents to locate outside social experiences.

In 1987, after John Andrew left the DATAHR program, Ghislaine recalls, their DMR (now DDS – Department of Developmental Services) case manager informed them that “You are not alone in Ridgefield. There are many other families who are looking for activities for their adult children with disabilities.” At last the moment had arrived when the Steeles and the Moomaws, along with the Lecks, the Ramabushanams, the Cassidys, and the Martins, to name a few, came together to build an organization that today provides programs for more than sixty disabled adults. 

Meeting on a regular basis, the families developed programs that covered the performing and fine arts, recreation and socialization. The performing arts group would meet at the Spotlight Theater at Ballard Green where they rehearsed and produced two plays a year, including Little Shop of Horrors, West Side Story, A Funny Thing Happened on the Way to the Forum and many more – two shows yearly with the talented contributions of Michael Deal, Marcia Simcha Jones, Gary Jones and Debby Ahle. Weekend field trips, which later became known as the “Out and About Club” and are now a part of Ridgefield’s Parks and Recreation Center, brought members to local lakes for water skiing and boating. The summer art program, run by art teacher Carolyn Daher, alternated with the school year performing arts program on Thursday evenings, at  the First Congregational Church of Ridgefield, later moving to the Jesse Lee Methodist Church.

In 1988, the families recognized that the time had arrived to legalize their organization. With the pro-bono help of Mary Gelfman and Sharon Dornfeld, SPHERE was born and incorporated. In 1989 SPHERE received a non-profit 501 c (3) designation from the Internal Revenue Service. SPHERE is an acronym of Special People’s Housing, Education, Recreation, Employment. A useful title, it spelled out the staggering challenges that SPHERE families and their children faced. The mission has endured to this day: “…to enrich and enhance the lives of adults through education, recreation and the arts while fostering and nurturing relationships between our members and our communities.” SPHERE no longer uses the acronym, as housing and employment are not a part of the mission, but the name remains along with the passions and determination of its founding families.

In 2000, because of her many years of experience as SPHERE’s president, Ghislaine Moomaw was asked to join a local group which, in conjunction with the Connecticut Department of Developmental Services, was interested in establishing a group home in Ridgefield. Coincidentally Chris Moomaw was, at that time, a member of the Town Affordable Housing Committee. The two entities teamed up with the local chapter of Habitat for Humanity to form a board which led to the creation of Sunrise Cottage, a group home run by ARI of CT. For the last 12 years, Sunrise Cottage has been home to six adults with disabilities, including John Andrew; many are SPHERE members who independently walk to SPHERE programming at 421 Main Street from their in-town location.

Valerie Jensen moved to Main Street, Ridgefield in 2002 and heard of a theater group rehearsing across the street at the Jesse Lee Methodist Church. Being a newcomer to town, Val says she was searching for a sense of belonging and decided to “just show up” at one of the rehearsals. Val was not a newcomer to the world of special needs, having grown up with a younger sister, Hope, who has Down’s Syndrome. Though she recalls not feeling immediately accepted by the group, she kept coming and eventually “…fell in love with the community; they became my closest friends.” With a dual Master’s degree in Elementary Education and Special Education, Val joined her deep commitment to education with her love of performance to assist in SPHERE productions, eventually directing Alice in Wonderland and adapting scripts for Spherical the Musical, Blues Brothers, Peter Pan, Into the Woods, Sphere’s Got Talent, the Wizard of Oz and others.

In 2004, when Ghislaine Moomaw decided to retire as Chairman of the SPHERE board, a position that she and Christine Steele had held off and on for many years, along with others, Val Jensen, already a board member, stepped into the leadership role. Her tenure lasted until late in 2014, when she stepped down to focus exclusively on her new mission, the Prospector Theater. 

As board chair, Val was able to follow through on core beliefs shaped by her personal life as well as years as a SPHERE volunteer. Increasing the visibility of SPHERE members both in the Ridgefield community and beyond was a goal which led Val to propose moving the yearly theater arts performances out of the Jesse Lee Methodist Church, which to this day generously provides rehearsal space in their parish hall for SPHERE performing arts classes, to the Ridgefield Playhouse, a public venue. Over time, Val came to believe that film would be the right medium to bring the talents of special needs adults to a larger audience, so she shifted the performance program from shows to film production, drawing on the talents of Emily Pambianchi, a Ridgefield Academy teacher and others in the community, to adapt scripts and shoot films in locations throughout the town. SHAKEsphere -A Retelling of Romeo and Juliet, Sparkle Island and The Bride of Frankenstein became award winning films at festivals including the Buffalo Niagara Film Festival; the Garden State Festival, Chashama Film Festival and the Vegas Independent Film Festival.

During this period, SPHERE members increased their participation in town events including the Christmas Tree Lighting at the Town Hall, the ROAR event at Ballard Green, and having a SPHERE float in the Memorial Day Parade. Rudy Marconi, Ridgefield’s First Selectman, as well as other town officials and organizations, were always there to support and welcome SPHERE members’ participation.  Under Val’s leadership, SPHERE members, already known to many audiences, increased their visible presence, becoming an essential part of the fabric of the Ridgefield community.

Another of Val’s initiative as Board Chair was inspired by her empathy for members’ families and caregivers, typically the sole means of transportation for their adult children to SPHERE programs. “I wanted to give them a break…” The idea of providing busing for members was realized in 2012 with the purchase of the SPHERE Bus, a challenging endeavor that depended for its success on the enormous help and brain power of many, especially Val’s sister Rebecca Ciota, SPHERE’s attorney, and their father, Don Ciota, and in collaboration with the town of Ridgefield and First Selectman Rudy Marconi. Today the SPHERE bus is seen around town transporting Ridgefield’s SPHERE members to evening programs four nights a week as well as to field trips and performances throughout the area. Four nights a week members can travel independently, free of parental or caregiver responsibility, which gives them a sense of pride in their independence and a break for their families –  A Win-Win for everyone.

Val’s experience as one of Hope’s older siblings left her with deep impressions of the unfair duality of the world. At school, Val witnessed many acts of cruelty toward her sister because of her intellectual disability, “I was so grateful to anyone who was kind to Hope.” Ever vigilant to any suggestion of patronizing behavior towards folks with disabilities, as board chair Val insisted that volunteers and members participate as equals in program activities. Today, a core tenet of the Prospector Theater is the rejection of a hierarchy between employees, special needs or otherwise, whatever their job. Val’s message is clear; “…everyone has equal worth.” At the Prospector Theater, a state-of-the-art movie house built on the grounds of a former theater whose mission is to hire and train adults with disabilities, everyone wears the same uniform, no matter their job description: a black tee shirt with the pink Prospector logo and black pants. Everyone has equal worth. Everyone is a Prospect.

Val’s years as a SPHERE volunteer and Board Chair shaped the principles which later defined the mission of the Prospector Theater: meaningful employment for adults with disabilities. Val describes watching SPHERE members spend hours of idle time each day because no one would hire or train them. Val knew the members well, knew their potential, knew their skills, knew they were citizens of value to their communities which lead her to create an entity that would show others that adults with disabilities were teachable, trainable and valuable employees. Because of her SPHERE experience, Val is responsible, along with others who supported her mission, including her husband Greg Jensen and her extended family and the support of many in the Ridgefield community, for the employment of over 100 adults with disabilities today.

When Lori Berisford, already a board member since 2009, took on the role as Board chair late in 2014, SPHERE had grown in complexity and membership. And it was clear that Lori was uniquely equipped to take on the leadership role. With a twenty-year career in Human Resources for the Pepsi-Cola Bottling Group and volunteering as a community activist for local non-profits such as Ability Beyond, Kids in Crisis, Ridgefield Visiting Nurse Association, Founders Hall, and The Women’s Center of Greater Danbury, Lori was experienced in raising money to help bridge the gap in the operating budgets of non-profits and to fund programming. So who better to pick up the reins of this complex and growing organization?

As a volunteer, Lori had already fallen in love with the SPHERE community. As she saw it, her first task was to build a board that would join her in the challenges that SPHERE faced as a non-profit with an ever-increasing population and extensive programming. Starting with Rebecca Ciota, the board secretary and SPHERE attorney, Lori surrounded herself with people she knew would work tirelessly for this group that meant so much to her.

When I asked Lori what brought her to SPHERE, she told this rather startling tale. One evening, she took her eldest daughter Lane, who was thirteen at the time and in sixth grade, to dinner at Dimitris, a casual restaurant on Prospect Street in Ridgefield. During the meal, a group of intellectually disabled adults came through the door and as they entered the room, Lori noticed that something happened to Lane. She froze, looked scared and physically withdrew into herself. Lori had never seen Lane act this way before and found this behavior startling and concerning. Right away she figured out what had happened – Lane had never been exposed to adults with intellectual disabilities. At the time, Lori was president of the Ridgefield Academy Parents Association and knew of Val Jensen’s involvement with SPHERE, so she called Val and asked her, “What do I do?” Val said, “Let me take care of this.”

As Lori recalls, Val did it in steps. First Lane was invited to dinner at Val’s home where she met a few of the SPHERE members over a casual meal. After a number of these informal meet ups, Val asked Lane to attend the Thursday evening music and performing arts program. And since Lane was a dancer, soon enough she had Lane choreographing routines with the members for their performances. In 2010, when Lane went to boarding school, Val said to Lori, “Now it’s your turn to come and work with our members.” And so she did.

Lori’s work with Kids in Crisis taught her something about how to motivate people, but she said, “As much as I did charity work, (SPHERE) it’s a different world, different emotionally, different giving back.” The Thursday night volunteering became an inspiring and meaningful part of Lori’s life. During this period, SPHERE’s need for fundraising grew as programs were added; summer art class continued with Carolyn Daher who had begun teaching members in the early 90’s, and in 2012 Ridgefielder Wendy Lionetti started a weekly jewelry making class. Anne Stauff, from Wilton but connected to both Val and Lori through the Ridgefield Academy community, introduced the weekly Cooking Club and the Walking Club. SPHERE members started participating in Friday’s Bingo at Ballad Green, overseen by Anne and Ruth Choplinski, mother of SPHERE member Susan Choplinski, adding another daytime program option to the SPHERE community.

Lori came to the leadership role already knowing the members well. When Lane came to music and theater class every Thursday night for two years, so did Lori. When Lane left for boarding school, Lori kept coming and to this day the Berisford family, husband John and daughters Lane and Liza, can be seen at SPHERE events, setting up and taking down chairs and clearing the leftovers from holiday parties. They all know the members and the members know them. Their mom’s passion for service to others is in their DNA.

Now, three years after Lori took over the Chairmanship, SPHERE provides programs for over sixty adults with disabilities, offers four nights of classes and two afternoons of activities, and has become an increasingly visible presence in the Ridgefield community. Art Class, Crafts and Jewelry, Music and Performing Arts are 12-month programs. Cooking classes at Ridgefield Academy run on the school calendar. Bingo at Ballard Green takes up Friday afternoons and Walking Club’s Tuesday stroll up Main Street reminds our members to stay in shape and connect with their neighbors. Kim Pereira, music director of SPHERE’s Music and Performing Arts program, has partnered with the Ridgefield Symphony Orchestra, The Ridgefield Chorale, The Ridgefield Conservatory of Dance, Jazz Composer and performer Chris Brubeck, the Enchanted Garden Dance School, and Scotland Elementary School. SPHERE members have performed with all of these organizations, on their stages and on the stage at the Ridgefield Playhouse for the end of year show, SPHEREtacular. Art class under the expert tutelage of Megan Marden had its premiere gallery opening during the 2017 Spring Stroll at SPHERE’s headquarters, a storefront behind Planet Pizza off Main Street. Jewelry class runs workshops at 421 Main Street on the first Saturday of every month for residents and their children, who learn the art and craft of jewelry making from program lead Wendy Lionetti and SPHERE members.

And as if that weren’t enough, a new program called SPHERE Talks has been added to the calendar. Launched this past summer by board member Neil Gollogly, whose brother Tom is a member, SPHERE Talks offers educational training for members and volunteers on a variety of topics, often suggested by the members, including training in CPR and a Fire and Safety Workshop presented by the Ridgefield Fire Department, Police Department and Emergency Responders. The most recent SPHERE Talks covered “Personal Etiquette and Social Media Manners,” presented by the Women’s Center of Greater Danbury. And the newly formed SPHERE Leadership Committee, composed entirely of members, underscores the increasing skill and independence of the members to take on such tasks as planning SPHERE Holiday parties.

When family and community join together to help those who reside amongst them but need an extra hand to grow and flourish, then magic happens. The Ridgefield community over the last three decades, its town officials, business community, educational, religious and cultural bodies linked up to form a chain of kindness and heart which resulted in an enduring, vibrant organization that embraces all aspects of Ridgefield life. Today we are celebrating thirty years of commitment and connection. SPHERE stands as a model for what can be done when courageous, dedicated and, yes, desperate parents, reach out to each other and to their community to say, can you help us out here? Can you join us in this mission to make the lives of our adult children flourish? Can you help us to fight isolation, meaningless existence and loneliness? And in return, we will give your lives a new purpose and meaning for years to come.

Let it be known that many of the names mentioned in this history do not have children with disabilities, adult or otherwise, or siblings or aunts or uncles. They chose to take the time to get to know people with disabilities, learn their names, laugh at their jokes, admire their art and their song and their skill and their courage, and to fall in love. And every day new people come forward, whether they be members of the National Charity League or friends of friends. Whether they be Daniela Sikora, Music Director of the Ridgefield Chorale, who opens up her home to our members, to swim and eat franks and watch turkeys stroll through her backyard. Or Emily Fennessey, who walks with our members on their Tuesday strolls. Or Michele Barricelli and Lauren Radman who devote their Wednesday evenings to baking and cooking with members. Every day in our programs someone is sitting there, watching members like Jocelyn Steele proudly stand up to talk about her experiences during the Women’s Center presentation, asking relevant questions and sharing information on safety and social boundaries. Every day someone is touched by something begun over thirty years ago by the Steeles and the Moomaws and many others who knew that they had to act, had to invent, had to reach out, so that their children would not be left behind. SPHERE’S story is a story of a successful and enduring mission. It is a story of a community that extended its hand. It is the hope that other families and communities can benefit from this tale.

Happy Anniversary SPHERE!

Jill Edelman Barberie

© Jill Edelman, M.S.W.,  L.C.S.W. 2017

Leave a Reply

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>