Open to the extraordinary

Valuing families with disabilities in the Church

The worship song swells. You lift your hands, lost in wonder. Suddenly, a scream and the boy in front of you bolts from the sanctuary.

Words like disruptive and disrespectful come to mind. You consider confronting the parents about proper discipline. Or asking the pastor to remind them of the availability of a soundproof nursery.

But what if there’s more to the story?

WHERE GOD MEETS US

I could share both missteps and moments of glory from my own experiences as a churchgoing mom of two children with disabilities. There’s the usher who suggested my little boy and I stay home so his meltdowns wouldn’t scare visitors.

But there’s also the worship leader who invited my daughter to play offertory and – when my pint-sized pianist chose a Harry Potter medley – there’s the congregation that commented only on the beauty of her gift.

If there is one thing I’d want churches to hear, it is Let’s embrace the messiness of what it means to be human. If we can’t worship because the child next to us has tics or the Scripture reader stutters, our understanding of worship needs expanding. God always meets us in the mess.

RECEIVING GIFTS

We receive gifts when we are open to the unique, the unexpected, the extraordinary. These gifts could appear in the discovery of a brilliant soloist, gentle nursery worker or punctual chair stacker. Other times we might receive the gift of a new way of seeing.

When Noah, a young man with autism, was about nine, he loved the repetition of his Anglican minister’s "Body of Christ broken for you." His mother Kalyn says, "When Jamie [the minister] got to us in the communion circle, Noah often lay his head on Jamie’s chest to hear the words up close."

WE’RE MISSING PARTS

Every part in the Body of Christ is needed. If our congregations were all male or over 60, we’d be missing parts. The same thing goes for a church without disabilities. According to Statistics Canada, 13.7 per cent of the population has a disability. If our churches were representative, a congregation of 250 people would have at least 34 people with disabilities. That is rarely the case.

Nearly a third of families with disabilities have left a church because their child was not included or welcomed (see Melinda Jones Ault’s doctoral study of 400 families, 2010).

FROM FEAR TO FAMILY

The National Organization on Disabilities, based in New York, found "Approximately 85 per cent of people with and without disabilities state their religious faith is important in their lives, but only 47 per cent of people with disabilities attend church at least once a month."

This lack of attendance is sometimes due to physical barriers, such as lack of accessible washrooms or large-print liturgies. But attitudes create a bigger barrier.

Dan Vander Plaats of Elim Christian Services in Illinois outlines five stages of changing attitudes – ignorance, pity, care, friendship and colabourers.

Many of us start from a place of disinterest and misunderstanding (or even hostility and fear) toward disability. We may have grown up hearing weakness is a sign of God’s judgment or an unconfessed sin, or we just don’t know how to act and so avoid people with disabilities. As we become aware of disabilities, we feel badly about the obstacles or pain people may face. But hopefully we don’t get stuck there, in pity, because no one enjoys being on the receiving end of pity, however well intended.

Our attitude matures into one of caring as we recognize not only their needs but also the value people with disabilities have in God’s eyes. We step forward to show support, perhaps by offering respite for parents, or raising funds for a sign language interpreter or ramp. But meeting needs is only part of the picture.

I once visited a church that advertised itself as inclusive. A row of wheelchairs (interspersed with chairs for support workers) was at one end of the gym – rows of chairs for other worshippers at the other. A greeter apologized for any annoyance the back row might cause me. The church had invited staff and residents from local agencies to an accessible space, but had not embraced them within the community.

The goal is always mutual relationship. As we befriend people with disabilities, we experience them not only as valuable in God’s sight, but in our own. We love them as individuals and enjoy being together.

We begin to see how much our friends have to offer. We value their gifts, and become colabourers in the church and community. They are no longer just included – they’re family.

SETTLERS OF CATAN, ANYONE?

When we see people as individuals, we look beyond special needs to human ones. Everyone needs friendship, significance, employment.

We all find ways to meet these needs by engaging with others with shared interests. If someone with a disability in your church loves Double Doubles, Settlers of Catan, the Blue Jays or Survivor, chances are someone else in your congregation does too.

If someone likes cars, could she and a mechanic at church tinker together? My son used his editing skills and gained office experience when a church member asked him to transcribe audio testimonies for her nonprofit’s website.

The Church is one of the best networking tools out there. Rather than creating a special program for people with a disability, why not facilitate friendship instead? (For more ideas see Erik Carter’s Including People with Disabilities in Faith Communities, Brookes Publishing, 2007.)

LET’S TALK

I heard recently of a nondenominational church where a visitor was making noises that frightened the people around him.

The pastor asked the family how he could help them feel welcome. At their request he started the next service by introducing them. "You may have noticed that it sounds like he’s struggling to breathe, but he’s fine. He has Tourette’s syndrome, which causes uncontrollable movements and sounds. Please join me in welcoming them," he said.

Rather than assuming what individuals with disabilities need to receive or have to offer, ask them. One might make an enthusiastic usher. Others might be uncomfortable greeting strangers, but are whizzes in the sound booth or flowerbed.

The need to speak up goes for the family with the disability as well. It’s easy for me to walk away. Life as a caregiver is stressful enough. Do I really need to do the hard work of speaking gently to people who have misunderstood me? Unfortunately, yes I do.

Recently, before church, my daughter and another girl were tossing a plastic knife pretending to be Marvel characters. I was thrilled. My daughter was playing the same thing at the same time with another child – a friend!

As I beamed, someone stepped between me and my daughter and told her to put the knife away. Where I saw budding social skills, she saw an inappropriate toy.

I was tempted to not say anything. Instead I asked for her perspective and told her mine. I promised to keep plastic knives at home, and requested she speak to me about any future concerns rather than correcting my daughter herself. We reaffirmed our commitment to one another.

When parents of children with disabilities described positive attitudes toward their family at church (in Ault’s study), they used words like "welcoming, supportive, willingness to be inclusive, accommodating, accepting, loving, willing to try, showing a genuine interest, understanding, kind, thoughtful, nice, caring and tolerant."

Not perfect – we all get it wrong sometimes – but we’re willing to try.