'Amazing Gifts: Stories Of Faith, Disability, And Inclusion'

What Happend When A Boy With A Disability Came To Church

Churches, synagogues, mosques and temples are places where people with disabilities might not expect to feel excluded, isolated or patronized, but that has often been the norm. For years congregations have effectively excluded people with disabilities from worship -- whether by steps and narrow doorways or by straitened attitudes -- or segregated them in “special” services.

The U.S. Census in 2000 counted 54 million persons with disabilities -- one in six Americans -- and that number is growing. Wounded Iraq and Afghanistan war veterans, including men and women with amputations, traumatic brain injuries and post-traumatic stress disorder, are swelling this population. Thanks to dramatic technological advances and improvements in neonatal care, formerly at-risk infants with severe and multiple disabilities now survive into adulthood. With the aid of breathing and feeding technologies and adaptive devices such as electronically operated prosthetics and speech-synthesizing computers, they are able to navigate and communicate. And the huge baby boom generation will soon be aging into infirmity, with attendant challenges of disabilities in hearing, vision, mobility and cognition.

Members of all these groups want to pray at houses of worship. Yet a 2010 survey by the Kessler Foundation and the National Organization on Disability found that people with disabilities are less likely to attend religious services at least once a month than are people without disabilities, by a 50 percent to 57 percent margin. The greater the disability, the less likely a person is to participate.

People with disabilities “can attend school, hold down jobs, and turn the key in the door of their own apartments,” wrote Erin R. DuBois in The Mennonite magazine. “They have won the legal battle for inclusion, but by the time they land in the pew at church, they may be too exhausted to fight for something more precious than their rights. Friendship is a gift the law can never guarantee to people with developmental disabilities. Churches across the United States, however, are reaping the rewards of building genuine relationships with those in their midst who are epitomized not by their disabilities but by their rare abilities to deepen the congregation’s spiritual life.”

“A Place for Everybody”

It took one family, new to the church, to transform the historic First Reformed Church of New Brunswick, N.J. When Pastor Hartmut Kramer-Mills and his wife and co-pastor, Susan Kramer-Mills took the pulpit in 2000, a wave of new members joined the church. Among them were a young mother and her 4-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 11-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. What concerned her was that Walter might be disruptive of 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.

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 being 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 children 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 pastors also got help a little closer to home. They went out to Reverend Bill Gaventa at the Boggs Center on Developmental Disabilities in New Brunswick 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.

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 explained, “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 nearby Rutgers University. “This would also allow his mother, Sandy, to remain in worship.”

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.

“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 15 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 is an excerpt from 'Amazing Gifts: Stories Of Faith, Disability, And Inclusion' by Mark I. Pinsky.

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