The Church is open to everyone, but the disabled and the parents of the disabled can be excluded from parish life due to difficulties in the logistics of being more involved. Many times the problem is a lack of awareness, but churches and dioceses across the country are doing their best to address these special needs.
Churches might make accommodations for their physically disabled members by widening doors, adding ramps, installing elevators, and providing special seating areas. However, is it enough? Father Dan Schlegel of the Church of the Holy Angels in Chagrin Falls, Ohio, doesn’t think so."
Parishes should make sure that seating for the disabled is not limited," Father Schlegel says. "They should be able to sit wherever one wants to sit. Churches can also provide an elevator when necessary and people to open doors."
Pastoral concern goes beyond the physical and social needs of his parishioners and the larger community for Father Schlegel and extends to sacramental access. "A key question in sacramental ministry now is: What do we do with people with limited mental capacity?"
In their pastoral statement on people with disabilities (1978), the bishops have noted that in addition to liturgical and sacramental inclusion for the disabled, parishes should be sensitive to the social needs of members with disabilities. The actions a parish takes can create "an opportunity for disabled and non-disabled people to join hands and break open the barriers that separate them. In such an interchange, it is often the person with a disability who gives the gift of most value."
The National Catholic Partnership on Disability was founded in 1982 in response to the bishops’ pastoral statement. The organization serves in an advisory capacity to the bishops.
"We also partner with a lot of Catholic organizations to help them minister to those with disabilities," says Jan Benton, executive director of the National Catholic Partnership on Disability. "If a parish has a need, we can help.
"People with disabilities can be nurtured in their faith and able to actively participate in their parish and bring their own gifts to the parish. It’s about relationships and community. That’s the bottom line."
Tom Levenhagen of Mary, Queen of Heaven Parish in West Allis, Wis., knows this well. He is the father of two daughters who are disabled. His older daughter has Down’s syndrome. Michelle, 24, attended age-appropriate religious-education classes and received her first Communion with the rest of her class. These days, Michelle is an altar server and a Eucharistic minister. "Michelle exudes a lot of enthusiasm, and she’s cute as a button," Levenhagen says. "We’ve always been lucky that she’s been so well-accepted."
Michelle’s younger sister, Lindsay, 22, has cardiofaciocutaneous syndrome, which involves more serious issues, including physical disabilities as well as a severe mental disability. Her parents’ concerns echo the dilemma of which Father Schlegel spoke. "Lindsay is without sin," Levenhagen says. "How could she sin? We don’t see any reason to deprive her of receiving the sacraments."
But Communion is a challenge because Lindsay cannot swallow the host. But no stumbling blocks exist for confirmation. Michelle is Lindsay’s confirmation sponsor.
Larry Barrows of Holy Cross Church in Colchester, Vt., is legally blind. Retinitis pigmentosa is stealing his sight as time passes. At his previous parish, he served as an usher. "That was entertaining," he said. He also served as a Eucharistic minister until his sight worsened to the point that he could no longer see people’s hands.
Now he serves his parish as a lector. "I wanted to do more at Mass than sit in the pew," he says. "I said I want to read. Once I know where something is, I can manage. My biggest problem is that my vision is like looking through a paper-towel tube. People are amazed at how much I’m able to do."
"I think parishes are more accepting than people expect," Barrows adds. "I was able to get involved because I put myself forward."
In the case of nonverbal adults and in the case of children, parents need to step up, Barrows says. "In many cases, the biggest limitation is the family. They worry about the kind of response they’re going to get."
Barrows’ experience as a special-education tutor, along with his own disability, may make him more sensitive to others with disabilities. "There’s a young man at my parish who is severely autistic and not verbal," Barrows says. "One Sunday, I invited him to help hand out bulletins. His mother told me that she hadn’t encouraged him to do things at the parish because she wasn’t sure how people would respond to him. Parishes are more loving and accepting than some people might expect. People stop and talk to this young man now. When they thank him for the bulletin, they understand that his response is his way of saying ‘Thank you.’ Now he comes to Bunco nights all the time. He has a great time of it. He’s a well-accepted member of the church. People look forward to seeing him and miss him when he’s not there."
Pat Koenig, the archdiocesan director of religious education for the Archdiocese of Oklahoma City, says that allowing those with disabilities to participate is vital to a vibrant parish community. "Accommodations are made at the individual parishes. If they need help with a particular child, we’ll see if we can help them. For instance, if there is a deaf student, we will help them look for an interpreter. Oftentimes, the family will help to work with the individual child. For 20-25 years, the parish of Epiphany of the Lord in Oklahoma City has had a special program for children with a variety of special needs. Circumstances can be so unique, so you have to work with the family and the parish staff to meet individual needs."
The Tulsa, Okla., Diocese has a diocesan-wide program for children with special needs as well.
At Father Schlegel’s parish, the Breathe program addresses the needs of families of children with disabilities, most of whom have such disabilities as autism spectrum disorders and ADHD. The program has gone a long way in changing perceptions and creating a more welcoming atmosphere for the families by offering programs for the children and their siblings.
As Father Schlegel says, "The number of children with autism and ADHD seems to be growing, and it takes a toll on family life. At Breathe, we give them a break."
Holy Angels first began offering the program about two and a half years ago and currently offers the program four times a year. Other area churches offer the program as well, coordinating with each other in order to offer the program as often as possible.
Karen Sunderhaft, director of the Holy Angels program, gets a lot of positive feedback from parents. "It’s a godsend. When you have a special-needs child, you can’t leave them with just anyone," says Sunderhaft, a special-education teacher and a member of Holy Angels. She has been with the program since its inception.
Stephen and Carol of nearby Aurora, Ohio, have four sons who participate in the program. Their two oldest sons have special needs: Alex, 11, has cerebral palsy, and Michael, 10, has autism. Their younger brothers, Thomas, 8, and Peter, 7, are typically developing children. All four boys enjoy the program.
The family, Holy Angels parishioners, found out about the program through the church bulletin. It soon became apparent that the program is much more than an opportunity for them to go out to dinner or a movie.
"As soon as they see it on the calendar, the countdown starts for them," Carol says of her sons’ enthusiasm. "It’s like a party for them."
The program is staffed by volunteers, with doctors and nurses either on the premises or on call. The children with special needs are paired with one or more volunteers, depending on need.
Whole families volunteer, including Sunderhaft’s family. "It’s a great place for families to volunteer," Sunderhaft says. "It’s brought a great awareness for my own kids, being able to recognize and interact with kids with special needs."
"No distinctions are made between the special-needs children and the typical children," Stephen says. "I don’t believe any of our children perceive that this is a program for special-needs children. It’s just a fun evening at church."
Entertainment, crafts and food are provided. A recently acquired bounce house has added even more fun. The program makes use of therapy dogs and a quiet area equipped with tents and sleeping bags for children who might need space to calm themselves if they become overwhelmed.
Linda Haskenhoff has been with the program for about two years. "The kids have a blast," Haskenhoff says.
Breathe draws families into the life of the parish community and helps create an atmosphere of acceptance where all are welcome.
"It’s heartwarming to see all these people give up their Friday nights to help you," says Rebecca of Chagrin Falls, Ohio, who is the mother of a child with Asperger’s syndrome.
Both of her children attend Breathe nights. Her daughter is old enough to help out while her younger sibling participates in the evening’s activities. "She has a blast!" Rebecca says.
Although she isn’t a Holy Angels parishioner, she is impressed with the program. "It’s a great thing to do," she says. "It’s nice because it’s open to everyone."
"The program opens up the eyes of the community to what life is like for these families," adds Father Schlegel. "We have accepted these children because, as we get to know them, we understand them."
Sunderhaft agrees: "Of all the places that you shouldn’t be judged as a bad parent or a bad child because your child is moving around or talking or not talking is at church. Church should be a safety zone."
"We feel more comfortable at church since the program began," Stephen says.
"We treat these children as the most important thing in the world for those three hours, and while they’re with us, they are," Father Schlegel says.
Haskenhoff hopes the program will spread. "This is a program that every church should have."
Laurie Ghigliotti writes from Atchison, Kansas.