What Families With Disabled Kids Need From the Church | Sojourners

What Families With Disabled Kids Need From the Church

A white sign on a wooden post reading: “Wheelchair users will need assistance to use the ramp in the church.” Image via Alamy.

Becky McMains spends most of her life in “advocate mode.” Her 9-year-old daughter was born with spina bifida and requires substantial medical intervention and special education services. She uses mobility aids to get around and has speech delays. In doctors’ offices and schools, Becky’s questions, recommendations, and even pushback have led to change, not just for her daughter, but for other children as well.

But when McMains brings her advocacy to church, she said, the response is different. In the place she most expected to find compassion, creativity, and a spiritual motivation to accommodate her family’s needs, no one seemed prepared to have the conversation. Churches were routinely surprised by what changes would need to be made.

“Church is not just about being nice, it should be counter culture, it should be leading culture,” she told Sojourners, visibly frustrated and exhausted. “But [the church is] not even interested in playing catch up.”

For disabled people and their families, frustration and exhaustion are familiar feelings. Broadly, McMains said people in the church seem to be blindsided by calls for helpful accommodations to the physical building, additional training for children’s ministry staff, or anything disabled people would need in order to participate in various church life activities. For the most part, she’s been told, churches just aren’t equipped to meet such specific needs.

This, McMains said, is counter to Jesus’ parables and teachings, including the parable Jesus told about a shepherd leaving the flock to chase after a missing sheep (Matthew 18:12–14; Luke 15:3–7). Jesus was constantly, proactively seeking out people with disabilities, she said, not just to miraculously heal them, but to affirm their humanity and bless them with spiritual nurture. She hoped that Christan teachings like these would inspire churches to become even more a place of belonging for disabled people than schools, where minimum stadards are dictated by law.

In almost every arena outside the church, families with disabilities have legal or policy grounds to advocate for accommodations. Churches are not bound by the Americans with Disabilities Act, and religious organizations fought hard to ensure they are not obligated to make their facilities or services accessible. Nor are they, like schools, obligated to adhere to the Individuals with Disabilities Education Act. Hospitals are also governed by codes of ethics and regulations that allow patients to make certain requests as part of their care.

Zoe Gross, director of advocacy for the Autism Self Advocacy Network, told Sojourners that ADA accommodations should be the floor, not the ceiling. There are barriers, particularly what advocates call “attitudinal barriers” that the ADA cannot solve. At the same time, voluntary ADA compliance opens religious organizations up for growth, advocates say. It paves the way for the voices that need to be heard. Becky McMains has seen it happen in her daughter’s public school. She’s constantly fighting for services like speech therapy and one-on-one instruction, but she’s often fighting alongside teachers, administrators, and fellow parents who love her daughter and want to see her thrive in the school.

Often, Gross said, when working with organizations on their disability inclusion plan, they hear that there’s never been a need — they’ve never had a member or client with a disability. It’s a “chicken or egg” scenario, Gross said, because if an environment isn’t accessible or accommodating, people with disabilities haven’t felt welcome to participate. “We’d all like to think that we’re maximally inclusive off the cuff but the reality is that there’s things we don’t know until disabled people are in the door,” Gross said.

Even once initial barriers are removed so disabled people can literally get in the door, real inclusion takes work. The burden often falls on the disabled people, those with medical complexities, and their families to assimilate to the way the church does things. It’s a heavy burden, and so it's not surprising that data shows people with disabilities and their families are less likely than the general population to be in religious community.

Key Ministry is dedicated to connecting children with disabilities and their families to churches where they can thrive. They provide a directory of churches that are “intentional in welcoming families affected by disability,” and offer training for churches. The need is real, reports disability activist Shannon Dingle, who compiled research for Key Ministry’s blog Church4EveryChild. Dingle found various sources reporting that people with disabilities were less likely than the general population to attend church, that about one-third of families with a special needs child had left at least one church where they felt excluded, and more than half of families with a special needs child had kept the child from a spiritual activity of some sort because of lack of support.

According to the research, families who did stay in a church commonly reported direct inclusion of disabled or special needs children with their age group (not with younger children or staying with parents) and sustained engagement from church leadership.

In addition to mobility issues, asking for feedback from families and people with disabilities might help a church identify the sensory load of a service — the sounds, smells, and visual stimuli that might make it difficult for some people to process — and either make overall adjustments or provide respite spaces and noise-canceling headphones, said Gross. When a church makes those accommodations readily available, rather than simply allowing people to figure out their own solutions, they send a message of welcome.

Gross, who is Jewish, helps her own synagogue continually improve as part of its inclusion committee. Having proactive, trained people in the congregation reduces the burden on families and people with disabilities to explain their needs. Leadership and trained congregants can also model appropriate responses to therapy dogs, wheelchairs, stimming, vocalizing, and other accommodations. “People really want to know, ‘Will I be judged? Will my family be judged?’” she said. The more clearly they receive a signal that there is a place for them in the congregation, the better.

Her daughter can participate in church in ways that, if they are open to it, can be profoundly instructive and rich not just for her, but for the entire congregation, McMains said. For instance, though her vocabulary is limited, the 9-year-old has a knack for names. Not understanding the social context that she should “sit quietly in church,” her mom said, she calls out to everyone she recognizes, shouting their name until they wave or nod. If they are willing to hear their name, and not the disruption, McMains said, they will hear in the child’s voice the God who also calls them by name.

But to experience that blessing, she said, they have to value the diversity of God’s image, not the perfect church service, because the shouted-name blessing is, indeed, loud.

Barriers — from inaccessible buildings to families feeling isolated by how different their daily concerns and experiences might be — are all either the direct or applied result of our theological view of disability, autistic pastor Lamar Hardwick argues in his book Disability and the Church. Christians’ emphasis on perfection in Christ or perfection in heaven can be distorted into a Christian imperative for a “perfect” body or mind.

“I think the church has to engage in critical thinking about our theology of the resurrection, disabilities, and heaven. What we believe about the presence and pursuit of perfect bodies and a perfect destination will ultimately shape the expectations we have of the environments we create at our churches.” Hardwick writes.

Heaven, he argues, is not a place where we are physically functioning better than ever, but an existence where we are fully thriving in the bodies we know best. He advocates for moving from a medical model of relating to disability to a social model. Instead of seeing the limitations and deficits a person experiences because of their physical body, we look at how the environment does or does not allow that person to thrive as the unique individual that they are.

“People can be kind in the moment, but to be sacrificial requires a spiritual impetus,” McMains said. And people will need to be sacrificial, because inclusion is difficult. Disabilities rarely go away, and they are not all the same. Churches can’t minister to children with disabilities on good will alone, McMains said. They need spiritual teaching and practical preparation if they want to welcome people of all abilities. “This is a marathon, and a marathon requires training.”