By Chelsea Temple Jones
Posted Dec 2, 2011
In the west end of Toronto, the grey sky threatens thunder. The heavy summer air pushes the heads of lilies down toward the sidewalk. Early this morning, there is no traffic flowing along the long vein of Runnymede Avenue, where a couple strolls comfortably, side by side, toward church.
“Today’s my birthday,” announces the man, Andreas Prinz. “I’m going to make a big change to be closer to God in all ways.” Marianna Adams, his partner, rolls her eyes. “I hope it happens.”
The church service at Runnymede United is held in the basement today because it’s so hot. Four fans are wheezing, and only one flickering candle is lit. Colourful tissue-paper art covers the walls, mimicking the intricate stained glass a floor above. A modest congregation of 30 people trickles down the stairs to take their seats. Prinz markets himself wisely, approaching the minister and the guest guitarist to tell them it’s his 37th birthday.
Eight years ago, a friend invited Adams to the church. When a congregation member asked her to join a worship band, she was hooked. Prinz tagged along to be near his girlfriend.
The two wait quietly for the service to begin. They like this basement worship space because it’s smaller and more intimate than the sanctuary. But the chapel upstairs is their favourite place. They go there, separately, to pray or cry.
Sometimes, Prinz is overwhelmed with longing for his mother, who died of cancer seven years ago. “I’m just very emotional,” Prinz says. “I care about people too much.”
“We both do,” Adams says. “People with Down syndrome show a lot of emotions.”
As people with developmental and other neurological disabilities are increasingly deinstitutionalized and integrated into their communities, the role churches play must also change. A common mistake inside church walls is to assume that people with disabilities have a stronger or weaker connection to God, or that their approaches to faith are somehow simpler or less varied than anyone else’s. Their presence in churches demands that we consider our religious interpretations of disability — from sinning and suffering to special and holy — and think about the many ways in which we are called into community. It will take serious attitudinal shifts to make sure people with disabilities don’t feel isolated. For their part, disabled parishioners are shedding the stereotypes and moving forward in their faith by simply being themselves.
“When you set people apart, what you’re really doing is creating another level of difference and another level of segregation. It’s just another way of pushing people to the margins,” says John Swinton, who, as chair of divinity and religious studies at the University of Aberdeen in Scotland, researches the theology of disability. “Disability, in all its forms, is just another way of being human.”
On the corner of a curved residential street in Hamilton is a house with a wider-than-usual front door. Inside, spotless hardwood floors accommodate three residents who use wheelchairs. One is 50-year-old Karen Chong.
Sitting in her rose-pink room, Chong doesn’t speak, though she sometimes moans. A lift hangs from the ceiling like a strappy, electrical anchor, nearly hitting the floor. Jin Lee, the summer student who works with her, announces they’re going for a haircut this afternoon. Chong lets loose a delighted wail. She loves to be pampered, to have her thick black hair done and her nails painted. Chong began attending various churches at age 10, when she moved into a group home for people with cognitive disabilities.
To communicate, Chong lifts her left arm to indicate yes, or her face becomes still for a few seconds before she bursts into a smile. To say no, Chong moves the same hand downward, toward the armrest on her wheelchair. She appears to understand my questions, and yet she has to sum up her answers because her communication options are so limited.
Do you feel like you belong to your church community? “Yes,” she responds.
Do people at your church think of you differently than you think of yourself? “No,” after a small spasm that delays her answer.
Chong says she feels a sense of equality with the people at her church and that she has a large group of friends there. She says she plans to worship at her church for a long time to come.
And finally: Do you think the people at your church have a realistic understanding of disability? “No.”
Weeks later, outside St. Paul’s United in nearby Dundas, Ont., where Chong has worshipped for the past 12 years, a sign on the front lawn features the blue wheelchair emblem and states, “FULLY ACCESSIBLE.” Inside, Chong sits in her purple wheelchair among a row of chairs midway down the aisle of wooden pews. The call to worship is ending, and Chong moans as the congregation responds, “and also with you.”
The congregation is invited to stand during hymns, but Janet Templeton, a friend of Chong’s, opts to sit. She wants to be on the same level as Chong. When the hymn ends, Chong wails, but nobody flinches. “Church is for everybody, not just people who sit quietly,” Templeton says later.
Midway through the second hymn, Templeton bounces out of her seat and wheels Chong out the door. The Disabled & Aged Regional Transit System (DARTS) has arrived to collect Chong and take her home. Transportation is an ongoing struggle. DARTS needs to be scheduled in advance, and the vans arrive in a 15-minute time frame that you don’t want to miss. Sometimes, the DARTS schedule doesn’t correspond to the church’s worship times. Chong missed an entire summer of church because of scheduling barriers she cannot control, leaving her with less power than a non-disabled person to participate in the spiritual community of the congregation. Now it’s autumn, and her first Sunday back at church is cut short.
Historically, several religions have linked disability to pitiful suffering through derogatory language. The Bible describes people with disabilities as “crippled,” “lame” and “disfigured.” Disability has been associated with punishment for sins or interpreted as a trial from God, designed to test the disabled person’s faithfulness.
Modern Christian images of disability are riddled with stereotypes of sufferers waiting to be healed or saved, of people having a special connection to God, and of heroes who overcome daily challenges simply by making it to church on Sunday. Even Christianity’s emphasis on striving toward the Kingdom of God presents us with an image of a world without suffering. Too often, in associating disability with suffering, people with disabilities are excluded from these metaphors.
In secular society, advances for people with disabilities in Canada have happened through litigation and activism. People with disabilities were one of the last groups to have their rights recognized when, in 1981, disability was included in the Charter of Rights and Freedoms. A 2004 study prepared by Environics for the Office for Disability Issues asked Canadians who played the most essential role in helping people with disabilities participate in society. Religious organizations ranked low on the list.
Though accessibility is on its radar, the United Church works largely reactively — particularly in Ontario, where the Ontarians with Disabilities Act recently became law and some churches, as public buildings, are now scrambling to fulfil their accessibility requirements.
While reactive inclusion is better than nothing, an attitude shift is what’s needed. In 2003, researcher Lilith Finkler took a look at three synagogues and found a link between the architecture of a place and the people worshipping within it. Some people with disabilities felt offended, for example, if a ramp was built as a fundraising project rather than funded through the synagogue’s ongoing budget. “People with disabilities need to be considered on an ongoing basis,” she says. “They’re not a special-interest project.”
Perhaps the most successful example of mixing disability and spirituality in Canada comes from the organization L’Arche, founded by Jean Vanier in 1964. L’Arche group homes are the only residences in Canada that mix spirituality, disability and everyday life.
For example, the L’Arche community in Richmond Hill, Ont., called Daybreak, caters to the spirituality of whoever shows up at its door — disabled and non-disabled. The regular programming includes church services, prayer times and meditation, along with friendship-building, woodworking, crafting and other community work.
As L’Arche communities have gradually sprung up throughout Canada, Vanier himself has been critical of other Christians. In 1998, his distinctive, sonorous voice was heard widely across the country when he gave the CBC Massey Lecture on belonging. He spoke about the rejection people with disabilities experience, and how they are institutionalized and excluded from communities without protest from the church. He challenged listeners to recognize and confront their fears about disability. “Fear is the root of all forms of exclusion, just as trust is the root of inclusion,” he said.
Back in Toronto, the sun is beginning to shine through the church basement windows. Adams adjusts herself and glances around the basement. “This is a very blessed day,” she says. “She’s not here.”
Neither Adams nor Prinz will go into detail (gossip doesn’t square with their spiritual values), but not everyone at Runnymede United makes them feel welcome. “I’m wondering if sometimes she and other people don’t like me because I have a disability. It makes me sad,” Adams explains.
People with communication differences or intellectual disabilities often face greater stigma, misunderstanding or exclusion than those with physical disabilities. “We assume that there’s something wrong in the mind,” says Swinton. “We don’t know what anybody’s thinking, never mind how someone who communicates differently is thinking. And the danger is that we make it up, and we make it up the wrong way.”
Some theologians reject the idea that disability is a personal problem, instead defining it as a social problem. They shift disability away from the idea that it ought to be cured or fixed, criticizing the harmful narratives pushed on people who don’t think of themselves as broken. “Sometimes Jesus was a guest; sometimes he was a host. Often people with disabilities are assumed to only be guests,” Swinton says.
So what are people called to do when they encounter disability? Perhaps simply some thinking. Consider that people with disabilities are no different than anyone else — no closer to or farther from God. Mull over the unfair labels cast upon people, and identify the sources of those labels. Face fears and insecurities about disability and perhaps admit how little of the topic we care to understand. “The heart of the Gospel has to do with friendship with God and with one another. And if we miss that, we miss the possible gifts disability brings to us, we miss out on being more faithful people,” says Swinton. While scholars grapple with the subject, people with disabilities remain seated at the metaphorical table, ready to worship. It’s the rest of the flock that needs to catch up.
The church service is over, and Adams bolts toward the entrance. She embraces her friend in a long-lasting hug. Her friend’s cat died last week, and Adams has been wondering about her for days. By theological measurements, Adams could be the initiator of belonging in her church.
Building a sense of belonging and developing a “ministry of noticing,” as Swinton calls it, is something churches can do that rights-based activism cannot. “To belong, you have to be missed,” Swinton says.
The congregation is about to be seated again, to gather their things and follow the minister out of the church basement. Suddenly, from the back of the church, someone pipes up,
“And if I could just announce, it’s Andreas’s birthday today!”
The pianist strikes the D note, and the congregation erupts in song. Prinz beams with pleasure, and Adams pulls him close for a kiss. The congregation’s singing rings through the air more jovially and robustly than any of the morning hymns.
Chelsea Temple Jones is a Toronto writer and a graduate student studying disabilities
Reproduced from http://www.ucobserver.org/ethics/2011/12/