Families, Advocates Discuss Ways the Church Can Welcome Persons With Disabilities

As the bishops plan a new pastoral statement for persons with disabilities, advocates look for acknowledgment of new realities and diagnoses and encouragement of greater inclusion.

L to R: Bella Santorum, shown sitting on the lap of her father, Rick, during her first Communion Mass at Our Lady of Knock in Ireland, offers a bright light to the world, as does Legionary Father Matthew Schneider, who has a form of autism and is shown with his fourth-grade teacher, Bryan Szumlas, now superintendent of Calgary Catholic School District.
L to R: Bella Santorum, shown sitting on the lap of her father, Rick, during her first Communion Mass at Our Lady of Knock in Ireland, offers a bright light to the world, as does Legionary Father Matthew Schneider, who has a form of autism and is shown with his fourth-grade teacher, Bryan Szumlas, now superintendent of Calgary Catholic School District. (photo: Courtesy of Karen Santorum and Father Matthew Schneider)

WASHINGTON — When Charleen Katra, the executive director of the National Catholic Partnership on Disability (NCPD), helped one parish arrange a sensory-friendly Mass for people with autism and other disabilities who may be overwhelmed by the loud music or lights at a typical Mass, she heard from the parish planning committee that a family that had been coming to the parish for 20 years walked in that night with an adult son in a wheelchair who their fellow parishioners had never seen before. 

As the U.S. bishops prepare to draft a new pastoral statement for persons with disabilities in the life of the Church, Katra told the Register that since their first pastoral statement on the issue in 1978, many issues have arisen that should be acknowledged and addressed, including the rise in autism diagnoses and encouraging increased efforts on the part of parishes to welcome and include people with autism in the life of the Church. 

While Katra called the bishops’ 1978 document “foundational” and pointed out that it came out 12 years before the Americans With Disabilities Act of 1990, the NCPD requested that the bishops release a new pastoral statement on the issue, given current needs and a broader understanding of disabilities and accommodation. The NCPD will assist the bishops as they begin the likely two- to three-year process of drafting the document. 

In the new statement, Katra is hoping for more focus on the giftedness of persons with disabilities. 

“We want to call forth those gifts, too, so that they can be altar servers, or ushers, or hospitality ministers, or members of the choir.” She added that the language in the old document used some very dated, pejorative terminology, whereas nowadays “we’d speak about someone with a disability versus someone being disabled,” for example.

The new pastoral statement will also be updated with a broader understanding of disability beyond physical and intellectual disabilities, inclusive of mental illness. 

“So much needs to be done, too, in small and large ways to break those existing areas where stigma is still prevalent,” Katra said. She often tells priests that many people they see at Mass “are probably praying for someone; maybe it’s themselves or a loved one who’s struggling with mental health or mental illness.” 

Katra cited North Dakota Bishop John Folda’s mention at the bishops’ spring meeting of the growing threat of physician-assisted suicide targeting persons with disabilities. Amid such threats, Katra said that “the way we receive someone is important for us to ponder and reflect upon, because we want to always do better.” 


Model of Accommodation and Participation

Legionary Father Matthew Schneider, who was diagnosed with autism two years into his priesthood, told the Register via email that one of the biggest things that has changed since the bishops’ last pastoral statement on the issue is “a greater understanding of a social model of disabilities and not just the medical model.” This model is focused “not so much on curing, but on accommodating. The social model is also what churches have control over, so it is one we should speak more about as a Church.”

Father Schneider, who wrote God Loves the Autistic Mind: Prayer Guide for Those on the Spectrum and Those Who Love Us and teaches theology at Belmont Abbey College, provided examples of increased accommodations leading to greater participation in the life of a parish. 

“A person in a wheelchair does not have any natural inability to be a lector, but if there is no ramp up to the sanctuary and no way for them to read from their wheelchair, they become unable to be a lector,” he said. “A sensory-avoidant autistic is able to come to Mass if [it’s] quieter and darker, but unable to come at the settings the parish keeps the sound and lighting.”

He added that increased accommodation often has additional positive effects.

“We provide closed captioning for the deaf, but plenty who are not deaf use them as well,” he said. “At a parish I know, there is one big ramp from the parking lot to the front door: Someone in a wheelchair can go up, but also older people who could make it up stairs struggle less on this ramp with a gentle slope.”

Father Schneider cited the “social and sensory experience of Sunday Mass” as “a big obstacle” for those with autism.

“It would be great if each deanery [grouping of five to 10 parishes] or so could organize a weekly sensory-friendly Mass where the lights and volume are turned down so those on the spectrum could go with a lower sensory experience,” he said. “This also creates an environment where autistics don’t feel shame in needing to stim (repetitive noisemaking or movement in autism) or other things that neurotypicals may often question at other Masses.”

Such Masses are gaining traction, but are still the exception, according to a directory he keeps on his website with 16 sensory-friendly Masses in Canada and the U.S. 

The Legionary priest said parishes should also be on the lookout for ways those with autism can serve the community. 

“We can often be good at clear detail-oriented tasks like maybe doing the books for some smaller ministries or setting up coffee and doughnuts,” he pointed out. “We also are often good at things related to our special interests: This is a part of why I think I’m pretty good as a theology professor.”


A Mother’s Perspective

Leigh Snead, a fellow at The Catholic Association and mom of four, feels grateful that her parish, St. Pius X in Granger, Indiana, has been a welcoming environment for her identical twin boys with autism, Carlo and Bruno. 

“I can usually count at least three other families, no matter what Mass I’m attending at our big church, that have a family member or child either on the autism spectrum or with Down syndrome or with other disabilities,” she told the Register. These children are a part of the parish life as altar servers, and there is even a special-needs catechesis. 

She would like the bishops’ new pastoral statement to emphasize outreach to families who have felt overwhelmed trying to attend Mass with “a young child on the autism spectrum or with any other disability that maybe doesn’t have a lot of vocal control” and who “got in the habit of not going to Mass” due to unpleasant reactions to their behaviors. 

“If there was some way in this statement to encourage people, our pastors, to get out there and find these families that fell off the radar,” she said, “to tell them, in very clear terms, ‘You’re welcome, and we want you with us in Mass and your child’s a gift, please come back.’” 

Snead also expressed a wish for Catholic schools to be “better equipped to handle different disabilities.” She acknowledged the reality that “so many Catholic schools have a hard time with their own funding for their basic curriculum,” but she would love to be able to send her kids to a Catholic school. She noted progress, citing the nearby Marian High School, which has a certificate program for children with Down syndrome and other disabilities.

Snead’s twins needed speech therapy and have different accommodations like more time on tests, “things that the public schools see all the time and I think that the Catholic schools haven’t seen.” She believes change on that is going to be incremental, but is imperative.

Katra said that she feels Catholic schools are “going in the right direction, but there’s always more work to be done.” She said for Catholic schools there is often the concern of insufficient finances and resources, which “make it challenging for the school to feel ready to serve someone.” 

The NCPD is working on the issue, she noted, and in cases where families tried to go to a Catholic school that “wasn’t as far ahead on this road as another school,” the organization is equipped to “address that and redirect them to someone else that would meet their needs.” 


Reaching the ‘Unseen’

Elizabeth Santorum Marcolini spoke with the Register about growing up in the Church with her younger sister Bella, who has Trisomy 18, a rare condition that doctors told her family was a fatal diagnosis, as only about 10% of those with the condition live to their first birthday. “She’s our little miracle girl, and she lives a really happy, beautiful life,” Marcolini said.

Bella turned 15 this year, and St. Catherine of Siena in Great Falls, Virginia, puts flyers in the bulletin to celebrate her birthday each year. 

“A lot of people brought gifts and meals,” Marcolini said, adding that parishioners have looked for “ways to celebrate and share in the joy and the gift of who my sister is.”

Marcolini said she and her family feel that every diocese should have “a greater outreach to the families of children with disabilities, particularly those that have children with really pronounced or severe disabilities.” 

“My sister, often in the back of Mass, will clap or she’ll make noises, and everyone’s always so gracious,” she said. “Often, we get actually a lot of smiles; people will come up to us after and say, ‘I just love hearing her here. It brings me a lot of joy.’ I think that is a really important thing.”

Her advice to fellow Catholics is that if there’s a child or teen with a disability in your parish, “be charitable because that parent has probably worked a thousand times harder than you can imagine to get that child to church,” and understand the family is receiving the needed sacramental grace of Mass, which is “such a beautiful and important thing.” She also encouraged saying “something nice to that family that makes sure they know that they’re welcome,” whether it’s “I love hearing those sounds,” or “You’re doing a great job.”

“Those things mean the world,” she underscored.

Marcolini co-wrote a book with her parents, former senator and presidential candidate Rick Santorum and Karen Santorum, called Bella’s Gift. She said her sister is a gift to the family because she has “a spiritual transcendence that you can’t even quantify.”

Her family experienced anti-life messaging when Bella was born, and a doctor tried to refuse oxygen to her because of the belief that she would not live long due to her condition. But the Santorums did not listen to the doctor — and their lives and the lives of those they encounter are enriched by the gift of Bella’s life. 

Marcolini encouraged the bishops to highlight good Catholic resources on the ethics of care for persons with disabilities, especially in those early stages, when the medical community may give discouraging or even inaccurate outcomes and advice to cease treatment. 

Marcolini still receives messages from parents with children with disabilities because “the community is very tight-knit, but it also feels very unseen. I can imagine if the Church is going to be talking to them, it’s a really important thing to first understand that that is the lived reality of so many parents with disabilities. It feels like a very hidden life because so many people just don’t understand it until you’ve lived it.”