Canadian woman with CP speaks out and helps her church become accessible for all

By Miriam Spies (pictured), who is starting her fourth year of Ryerson University’s journalism program in September, for United Church Observer:

A 10-year-old girl sits in the basement corner of her new church. Her disability, cerebral palsy, impairs her speech and limits her mobility. Elderly grandmothers and grandfathers sit beside her, but cannot hear her. The rest of the dining hall fills with clusters of social groups and families. Surrounded by people, she feels alone. Her minister father recently accepted a call to this new congregation, but the girl wonders how she will fit in. Her former church had watched her grow up, understood her speech. This new congregation felt cold, their treatment often condescending. She wondered how this place could ever feel like home.

On top of the social isolation, the church building was completely inaccessible. Assisted by her father, she climbed the stairs to his office every Sunday. She felt calm sitting in there. When the service started, the little girl walked with the chair of the Board to a pew near the front. She had to be helped up and down the stairs to Sunday school classes and then to the coffee hour after the service. She sat, placed in a corner, until her father was ready to go home. People spoke to her when they needed to assist her. She was dependent and stuck in the midst of both physical and attitudinal barriers.

Twelve years ago, I was that girl feeling unknown and out of place in my new church, St. Paul’s United in Dundas, Ont. When my father, a United Church minister, accepted this call, my siblings and I were unhappy to move. We lived beside our old church, could come and go freely. I had made friends there, been loved by “adopted grandparents,” and was accepted and included in all church life. Being the youngest child as well as a preacher’s kid twice over (my mother is also a minister), I was encouraged to attend church, namely one of my parents’ congregations. After agreeing to try the new church out for a year, I started dreading Sunday mornings. When months passed with no improvement, I considered returning to my home congregation.

My mother suggested I write to the pastoral care committee, sharing my feelings of exclusion and discomfort. I wrote the letter in the voice of an 11-year-old girl who had grown accustomed to isolation and discrimination, but also as someone taught that this treatment was not acceptable. The chair of pastoral care, Barbara Carson, was shocked at my words, but upon examining her behaviour and tendency to avoid me for fear of misunderstanding my speech, she saw where my feelings came from. She shared the letter with the committee as well as a few friends in the congregation. Slowly, attitudes began to shift. People started seeking me out on Sunday mornings and grew more comfortable with my speech. The feelings of isolation that were driving me to leave gradually disappeared. I came to know people and realized a home here was possible.

As much as this story is mine and stirs up memories of being alone and rejected, it is not unique. Churches have the amazing opportunity to create a safe space for people like me as well as many others: teens being socially excluded, people facing abuse at home, families looking for support, older folk who live alone, and all those yearning for community and loving acceptance. Maybe that’s why it’s so painful when it doesn’t happen.

Laura MacGregor, mother of three boys, has a story similar to mine. Instead of the United church she attended being transformed into an inclusive community, MacGregor decided it wasn’t a safe space for her son Matthew. Matthew is now a teenage boy living with cerebral palsy. When her son was born, MacGregor suggested making the church building accessible and offered to start a committee to examine options. The sanctuary and community rooms were accessible, as long as people heard you knock at the special entrance, but the children’s programs were impossible for Matthew to access. MacGregor was told that any improvements to the building would be too costly.

Even more frustrating, though, were the attitudes her family encountered when Matthew was born. MacGregor says, “I was very tired of hearing that God chose me for this special journey or that God chose Matthew to be special. It was infuriating.” There was no discussion about how the rest of the family felt or what support was needed. “I felt very isolated among a community that I had hoped would support me,” she remembers. “I became very angry and stopped going to church completely for about four years.”

MacGregor expects her community to include her family as any other: “I just want to be accepted as a family; yes, one with some challenges, but we are still a family. I would like to be able to do things as a family. Leaving Matthew behind because the church isn’t accessible isn’t an option.”

The MacGregors have since found a new church, Westminster United in Waterloo, Ont., where Matthew is included and loved by the community. When they arrived, part of the church was accessible only by stairs. Without fanfare, a ramp was quickly installed to ensure Matthew could attend Sunday school. “I could have cried,” says MacGregor as she fondly recalls that action. No questions or opinions are shared about how Matthew experiences his disability; he is simply accepted.

A couple of years after my father and I moved to St. Paul’s United, people broached the topic of accessibility. Around the same time, we started discerning what it meant to be an inclusive community. Same-sex marriage was becoming an issue, and this spurred us on to also become intentional about including people of different ethnicities and ages, and those living with disabilities. In a 150-year-old building with four levels, many rooms and countless stairs, this conversation on accessibility felt long overdue. Expenses were measured, options researched and plans drawn up. The renovation was expected to cost $800,000. It took two years to renovate and eight to raise the money. I was proud to be involved in the ribbon-cutting ceremony and cannot overemphasize the improvements the elevator has brought to our community.

Congregations do not need to spend thousands of dollars when becoming more inclusive communities. Churches can be a great place to build support and nurture friendships. Strike up conversations. If you are worried about misunderstanding someone with speech difficulties, tell them you aren’t sure what they said. I always tell people it’s best to be understood, even if that means having to spell out words. Do not assume people with disabilities want to sit together or in a specific area of the sanctuary. Set up chairs and tables for coffee hour. Ask about people’s needs or the needs of caregivers. Do not assume you know. MacGregor says having people invite Matthew to join them while she gets coffee is much appreciated. Including other siblings is important as well. Have conversations about what changes — physical modifications and attitude shifts — could be made to create a better and safer experience. People with disabilities and their families are often accustomed to problem-solving and know best about what they need.

Over time, my church has been transformed into a safe and loving place for me. When my 16th birthday approached, I realized my friends were not schoolmates but congregation members, and they varied in age. I sent out invitations and was surprised when everyone said they would love to celebrate with me.

The recipient of my earlier protest letter tells me she’s grateful for my words. “I discovered a warm friend in the bright, intelligent young lady I almost missed knowing,” Carson says. The person I sit with during worship has become a dear friend and mentor. Now coffee hour is a time to connect with those I love, to nurture that community. While sitting at a table, catching up with friends, I also keep an eye out for people who may be on the fringes. I feel grateful that I chose to stay and blessed to have such a sacred home.