The historic First Reformed Church of New Brunswick, New Jersey, organized in 1717, sits literally at the intersection of faith and disability. Next door is the Elizabeth M. Boggs Center, a University Center for Excellence in developmental disabilities education, research, and service and part of the Robert Wood Johnson Medical School. New Brunswick is also home to the Douglass Developmental Disabilities Center at Rutgers University. For Pastor Hartmut Kramer-Mills, a native of Jena, Germany, who began his theological education at Heidelberg University and is married to the congregation’s American-born copastor, Susan, the church’s proximity to these institutions is more than symbolic.
“A church is only on the map of the community,” he said, “when its ministry is relevant to that community. In our diverse society, there’s never one single map. With resources like these, it was clear that, among other maps, the ‘map of special needs’ was important for New Brunswick.”
But it took one family, new to the church, to transform the congregation, whose seventy regular members often felt lost in a sanctuary that seats six hundred. Shortly after the Kramer-Millses returned from pastorates in Germany and took the pulpit in 2000, a wave of new members joined the church. Among them were a young mother and her four-year-old daughter. The woman introduced herself as Sandy and her daughter as Kathleen. Hartmut noticed, however, that when Sandy filled out her membership form, she also listed her eleven-year-old son, Walter, whom neither of the two ministers had ever seen.
Sandy explained that Walter had autism, a diagnosis of intellectual disabilities, and was nonverbal. His IQ was reported to be around fifty, which Sandy thought seemed high. What concerned her was that Walter might be disruptive to the church’s worship life, partly because of his eating habits and personal hygiene. Sandy worried that bringing Walter along to church might add another burden to her life—the possibility of rejection by a church family.
Coming from Europe, with its heritage of official state churches, Hartmut was unfamiliar with the concept of a “church family” that might exclude newcomers. He believed the church was a public institution in which there should be a place for everybody. His idealism encouraged Sandy, and soon she brought Walter to church. He turned out to be a relatively calm child, although he did have significant support needs, such as help with standing and sitting, following the service, and calming down when he became excited. In addition, Walter needed structure. He enjoyed the repetition of the liturgy and the recognizable distinction between the worship leaders, who wore robes, and those in the pews, who did not.
Susan Kramer-Mills baptized Sandy during worship on May 5, 2002. In the following weeks, the two pastors prepared for the baptisms of Walter and his sister, Kathleen. Because of Walter’s fear of confined spaces—even the church’s large sanctuary—the pastors and Sandy decided to baptize him outdoors. By custom, at midsummer, First Reformed Church held a joint open-air service with other area Reformed churches, marking the conclusion of collegiate Vacation Bible School, and this seemed a good opportunity to baptize Walter. Still, the boy was anxious about events that took him outside his routine, so the pastors met regularly with the family at the outdoor worship area to rehearse the baptism. For several weeks, they all went through the sacrament using an empty bowl on a camping table on the front lawn of a nearby farm, the only witnesses a pair of cows watching over a fence. Finally, during worship on August 4, 2002, Hartmut baptized both Walter and Kathleen, surrounded by members of five other churches, all without incident.
At this point, bringing Sandy and her family into the church family was guided by little more than common sense and the church’s innate sense of inclusion. To go farther and deeper, Hartmut and Susan needed to seek help in understanding Walter and autism and in providing the support the family required. It seemed only logical that the pastors visit Walter’s school at the Eden Family of Services in Princeton. The school’s director, David Holmes, gave them an introduction to autism and insights into the status of research on its origins, symptoms, and effects and into several schools of therapy. He also made suggestions about how the ministers could help First Reformed Church become more inclusive. Holmes’s book, Autism through the Lifespan: The Eden Model , became the Kramer-Mills’ guide in the months that followed.
The pastors also got help a little closer to home. They reached next door to Rev. Bill Gaventa at the Boggs Center and at his invitation joined the Autism and Faith Task Force, a group of lay people and clergy from a variety of faith traditions that Gaventa had helped organize as part of the Boggs Center’s work. Through the task force, the two pastors learned how other faith communities had integrated people with autism and how to apply those experiences at First Reformed. Ultimately, the couple also met with faculty members at Rutgers University’s Douglass Developmental Disability Center and Rutgers Graduate School of Education.
The next step for the pastors was to apply what they were learning. Normally, children in the congregation began Sunday services with their parents in the main sanctuary and then, after a junior sermon, left for Sunday school classes. “While it seemed impractical to set up a separate Sunday school class for Walter alone,” Hartmut wrote in the Journal of Religion, Disability, and Health , “we did not know how to integrate him in one of our classes, as all three of them consisted of much younger students. Instead, we decided to provide him with individual respite care” offered by student volunteers from Rutgers. “This would also allow his mother, Sandy, to remain in worship.” Sandy readily agreed to the plan and joined a group of church volunteers who worked to make it happen.
Soon, the congregation’s main committees were drawn into the effort, which had the collateral benefit of allowing the majority of the church’s volunteers to become quickly acquainted with Walter and his family. The Worship and Music Committee was asked to consider an “emotional reversal” of the order of worship. Until then, worship started in a reflective and meditative mode that eventually led to joy and praise. Now the pastors suggested allowing for worship to begin a bit more noisily, accommodating Walter when he needed to disrupt things, and to provide for reflection and meditation after the children’s sermon.
The change was explained in the Sunday worship bulletin. Members accepted it well, perceiving it as giving everyone an opportunity to participate in ministry with Walter. In addition, the discussions that surrounded the change gave committee members a renewed sense of their role in determining the order of worship.
Almost immediately, church members embraced Walter, and four people appointed themselves his unofficial support team. He accepted this development readily and quickly grew familiar with the members of the team. It helped that the team stayed small, never with more than four members. The volunteers stayed with Walter during service and coffee hour and took him on short walks when he was restless. Other church members confided to the pastors their admiration for Sandy’s care of Walter and Kathleen and for the fact that she made the family’s regular church attendance an imperative.
At the pastors’ suggestion, the church’s finance committee agreed to raise funds to hire a respite worker to do what the student volunteers had been doing. The Christian Education Committee held garage sales and hosted breakfasts and dinners to solicit donations. The committee also appointed a small autism task force, with Bill Gaventa serving as informal advisor, to monitor all aspects of support for Walter. The task force received a small budget, so it became part of normal church administration. One of its first accomplishments was to establish a regular schedule of family events and excursions that would link Sandy and her family and a few other families from the Eden School with church families.
Ultimately, the autism task force was renamed the Special Needs Accessibility Project, and its mandate was broadened to reflect its member’s awareness that other developmental disabilities existed besides autism. It also reflected its members’ conviction that their work was really about providing access to God for people with special needs.
Still, the changes taking place at the church to include Walter sometimes met resistance. As Bill Gaventa has written, the difference between welcome and rejection of people with developmental disabilities in houses of worship can be small.
As the inclusion effort gained momentum, church members occasionally called the pastors to complain about Walter’s behavior during worship. One person voiced concern about whether the ministers were “turning the church autistic.” The pastors responded by publishing more of Walter’s story and reports on the work of the special needs group in the monthly newsletter. Walter’s family joined the church’s Dutch Dancing Group, which further brought the boy into the life of the church. As a congregation, members read books such as That All May Worship: An Interfaith Welcome to People with Disabilities and We Don’t Have Any Here: Planning for Ministries with People with Disabilities in Our Communities . Although one member did leave the church over this and other issues, what little anxiety and resentment existed in the church ultimately faded as Walter and his family became part of the fabric of the congregation.
In 2005, Walter reached confirmation age, but because of First Reformed’s small membership, he was alone in his age group, and there was no confirmation class in which he could be included. The larger question for Sandy and the pastors was, in any case, what could confirmation mean to Walter? Hartmut believed that confirmation was foremost a remembrance of baptism, an invocation of the Holy Spirit, and admittance into the confessing membership of the church. He and Sandy discussed what they wanted for Walter and “quickly found common ground,” he later wrote. “We did not want to pursue Walter’s confirmation only for the sake of the ritual. It would have to have meaning if we were to proceed.”
The church’s elders agreed, and they concurred that Walter’s training should be flexible, consistent with their understanding of God’s grace. They wanted to focus on Walter’s potential for learning and growth in their faith. “At the time, this sounded well intended,” wrote Hartmut, “but also very ambitious. How would we determine Walter’s potential for growth of faith?” Again the church’s neighbor, Bill Gaventa, offered some help in the form of examples of curricula from the Boggs Center library. Soon the group had a list of learning goals and objectives and a custom-made curriculum with illustrations, simple songs, and very simple texts.
When two church members who were also special education teachers reviewed the curriculum, they felt the lessons were in some respects too difficult for Walter, and in others they were too simple, underestimating his ability. Drawing on their expertise, they revised it down to six lessons. On May 11, 2008, Walter, now eighteen years old, was presented to the Board of Elders. Accompanied by his mother’s voice and Pastor Hartmut on the piano, Walter sang the Doxology and the Gloria Patri. The elders continued with a normal, if modified, confirmation class setting, asking Walter to distinguish a Bible from a hymn book and an angel figure from a cross.
Having satisfied the elders, Walter was confirmed a week later, on Trinity Sunday, May 18, 2008. While using the traditional order of worship, the pastors were determined not to have Walter experience worship as a passive recipient. They included a Sunday school skit before the sermon, written by Susan and called “Weedy Creation.” The plot followed the creation story of Genesis 1 and required Walter to hold up a sign for the congregation after each completed part of a very diverse creation. Seven times he performed this, exclaiming each time, “It is good!”
The confirmation ceremony also was tailored toward Walter’s strengths. Instead of the usually required verbal vows, team members prompted Walter to act out his vows. A member read the four professional questions, but instead of answering “I do,” Walter handed her, after each question, one of the objects he had used during his confirmation class sessions: a wooden cross, a Bible, a figurine of an angel, and a figurine of Jesus. In the end he received the blessing while kneeling in front of the holy table, something that had also been rehearsed. It was a joyous day, and representatives of many agencies and nonprofit groups joined the worshipping community for the event. The service was followed by a party in the church’s fellowship hall.
“Today, Walter is an integral part of the congregation at First Reformed Church,” Hartmut said, and working with him has connected many groups and individuals within the congregation. “It has also opened our eyes to people with other needs,” the pastor said. These include Latino schoolchildren in New Brunswick, some of whom First Reformed has integrated into its congregation, and homeless men, for whom it provides shelter in rotation with other area congregations. For many years now, as many as fifteen homeless men have slept in the church’s fellowship hall for two weeks each winter.
“Anybody working toward including a particular group,” said Hartmut, “soon discovers that inclusive ministry does not stop there. It leads to many other groups, whose access to the holy table deserves equal attention.”
This story is one of sixty-four in the forthcoming book Amazing Gifts: Faith, Disability, and Inclusion, by Mark I. Pinsky, with a foreword by Ginny Thornburgh, to be published soon by the Alban Institute. The book tells stories of people with disabilities, their family members, and their congregations who have taken actions to make their parish, church, synagogue, temple, or mosque more inclusive of children and adults with all types of disabilities.