By Kristina Marie
This is Part 1 of a 2-part series. Read Part 2 here.
For families who experience a disability, finding a place of faith for the whole family to worship, learn about God and connect with others can be daunting. Trying a new church often means exposing your child to an unfamiliar environment, uncomfortable routines and strict expectations—all of which are more difficult for children and adults with autism and other disabilities.
About 80 percent of families who have a member with special needs do not attend church, according to Joni and Friends, a worldwide Christian ministry that serves people and families affected by disability. Many families are fearful that volunteers will not be able to care for their child, some feel rejected, judged or hurt and others don’t want to be a burden.
“Unfortunately, although church is meant to be a place where all are welcomed in, just as Christ welcomes us into His family, it does not feel that way for many families who have a loved one affected by a disability,” says Lyla Swafford, Portland-area director of Joni and Friends. “We tend to be creatures of habit and most of us are resistant to change, even if that means a change in perspective and behavior that would make others feel more welcomed and included into our church body.”
Joni and Friends seek to be a bridge between those in our communities affected by disability and the churches that seek to welcome them into their church body by offering resources to teach, equip and train church leaders and volunteers, Swafford adds.
Dr. Todd Miles, Theology professor at Western Seminary, agrees we may need a change in perspective.
“People in America are uncomfortable with death, illness and disability,” he says. “When we encounter people with disabilities in our churches, we are sometimes not sure what to say or how to treat them because we think they are not like us. However, in Genesis 1 and 2, the Bible talks about how all people are created in the image of God. People with disabilities are just as worthy and deserving of dignity and respect.”
Still, many families remain isolated feeling overwhelmed and alone in the daily responsibilities of caring for their special needs child.
“We were devout Catholics until my son with autism was 3 ½ years old,” says mom, Lisa Hilster Staffa. “Then he wanted to toddle during mass each Sunday. Couple his toddling with impulse control issues, and after about six months we gave up going. It was just too much stress.”
Adapted liturgy may be an option to ensure that all people, and those parishioners with developmental disabilities, feel welcome.
“The Catholic church wants all people to feel welcome to celebrate the Eucharist at the regularly scheduled Sunday Masses,” says Angela Paz with the Office for People with Disabilities at the Archdiocese of Portland. “An adapted Liturgy may include simplified language and vocabulary, songs with simplified repetitive melodies, concrete versus abstract opportunities for participation, dramatization of Gospel and more.”
Parents can help clergy by offering information and tools used at home and school to make transitions smoother at church. Families should have an honest conversation with church leaders about their loved one’s needs and what is working or not working.
“Help them to understand that a child with ASD has strengths and weaknesses just like the rest of us,” Swafford says. “They engage in certain behaviors not to ‘cause trouble,’ but because that is their way of trying to communicate a need. Parents can help people at church learn to speak, act and offer help in a way that is consistent with the way that the child best receives that help. We all need to learn and look for clues that the child is getting overwhelmed. When strategies are put in place ahead of time, this creates a safe feeling for everyone.”
However, some families attending church are experiencing barriers.
“Many times, special needs children age out of the class that’s most appropriate for them, or are segregated into special classes away from their typical peers in the body of Christ,” says mom Debra Kannan, whose son is 12 with a developmental age of about six. “When churches exclude these children, they isolate the family they are in.”
However, isolation is not intentional.
“While the Christian church believes that we should care for those with disabilities, they often just don’t know how to go about it effectively,” says Blake Shelley, area director for Young Life Capernaum. In fact, only 10-15 percent of churches in the United States either have a disability ministry or are planning on creating one. “I desire to partner with churches and address how to better serve those with autism and other disabilities,” Shelley adds.
Young Life Capernaum is a Christian nonprofit with a mission to introduce adolescents of any ability ages 12-26 to Jesus Christ. While Young Life builds relationships and introduces these kids to Jesus, the goal is to help get them plugged in with a church body, especially as they approach the age of 26.
“We believe that being involved with the church is the key to lifelong growth and fellowship,” Shelley explains.
Diagnosed at age 6 months with Cerebral Palsy (CP) due to a lack of oxygen at birth, Shelley had to overcome many obstacles to get where he is today.
“Personally, as a person with a disability, I want to feel included with what everyone else is doing, and I feel like that is not uncommon,” he says. “I think as a church body, we need to think about how we can adapt what we are already doing so that we can include people with disabilities.”
Studies about inclusive education have found that when all kids are in an inclusive environment, they learn better because they are more engaged with the material.
“How do we embrace the special needs community in our churches?” asks Dr. Paul Anderson, professor of Biblical and Quaker Studies at George Fox University. “By creating space for them. Jesus welcomed children and the elderly. He cared for the needs of the lame and blind, and he touched and sought out those most ostracized by society.”
Anderson offers solutions such as creating space in a church by removing pews so there’s room for people in wheelchairs. Or perhaps inclusion starts with a special needs ministry where people in the church come alongside the disabled to help them through the service or class. Another idea is to provide a respite care program for tired parents.
In the Jewish community, some are hiring their own aides or therapists to help their child through religious school.
“I’ve made it work and broke the mold,” says Risa Colton-Feldman, a mom of two boys with autism. “I want to open up their world and engage them. One way to do this is through the music. For my other son, he has a wonderful memory and he picks up on things at synagogue I don’t even remember.”
Rachel Rothstein, director of Educational Initiatives at the Jewish Federation of Greater Portland, says they work toward inclusion in classrooms and synagogue by providing professional development speakers and sensitivity workshops for all educators in the Jewish community. The Jewish Family and Child Services offers counseling, parent support groups and workshops at local schools and synagogues. They work to inform teachers and religious leaders about promoting acceptance and inclusion of Jewish children and adults with disabilities.
“I work with educators to help them provide behavior modifications, accommodations and other practical solutions,” says Corinne Spiegel, program inclusion specialist for Treasuring, Accepting and Supporting Kehillah (Community), also known as TASK.
In the Mormon community, manuals and procedures for helping kids with disability are provided to teachers.
“It’s a very family oriented community and my son is loved and included with everyone else,” says Lori Woodley, whose son is not able to speak and in a wheelchair. “Someone from the congregation always volunteers to care for him. It’s a calling.”
It’s important for parents ask questions ahead of time before trying out a new spiritual community. Some churches now have “inclusion assistants” or “buddies” to help kids get the most out of their mainstream class while remaining with their peers. Big churches often have separate special needs ministries.
Sonshine Treasures at Sunset Presbyterian Church is a Sunday school program for developmentally disabled individuals ages 12 and older who are seeking a loving church family to grow in their Christian faith. They worship with the whole congregation, and then go to their Sunday school room where they have a simplified biblical message, prayer and refreshments.
“We have learned that looking through the eyes of the Treasures, we see a lot of things we never saw before,” says Byrnace Ristow, long-time Sonshine Treasures volunteer. “They are so transparent and forgiving; always sincere. The Sonshine Treasure ministry has helped us to grow in our own walk with Christ and see how serving others can be a truly amazing and enriching experience.”
Click here for Part 2 of our series on Faith and Inclusivity.