Disabled people say welcome to our world

by
01 May 2020

Maybe now churches will listen to people with disabilities about inclusive ministry, suggests Naomi Lawson Jacobs

Church Times

COVID-19 is moving churches online. Thrown into the deep end of digital and remote ministry, churches are having to think imaginatively about how to reach people at home. Many are experimenting with streamed services and prayers, and thinking about new ways to include isolated people in worship. They are rethinking church cultures: the ways in which we can “do church” and “be Church”.

It has taken a crisis in society to inspire these changes. But disabled people’s groups have been rethinking churches in this way for a long time, considering how to make them more accessible to people in all kinds of situations. And disabled people’s calls for change have not been responded to so quickly, nor so imaginatively.

Last year, I completed a doctorate on disability and churches. I was privileged to interview 35 disabled people, and to visit many church projects organised by and with disabled people. As I focused on people’s lived experiences as disabled Christians, I heard one message above all others: disabled people have their own stories to tell, and their own ministry to share with churches.

In the secular disabled people’s movement, the slogan “Nothing about us without us” is a key principle. But, in the churches, ministries for disabled people by well-meaning non-disabled people rather than ministries by and with disabled people are often the norm.

Too often, for the people I spoke to in my research, their churches positioned them as recipients of others’ service rather than as co-creators of the Kingdom of God. As Fiona MacMillan, who chairs the disability advisory group at St Martin-in-the-Fields, writes: “In a Church which professes the gospel paradox of strength in weakness, we’re more often objects for pastoral attention than agents of change. We are more likely to be known by our needs than celebrated for our gifts.”

Looking at the stories gathered for my research, of people with ministry and service to offer who were often marginalised by their churches, I could not help but come to similar conclusions.

 

MY RESEARCH participants were a diverse group, including ministers and lay people, from the Church of England and other denominations, and with an age range between 18 and 82. They experienced a range of different impairments, including mobility, sight, and hearing impairments, invisible health conditions, learning difficulties, neurodivergence (such as autism), and long-term mental-health problems. So, of course, they had a mix of stories to tell, and a diversity of experiences.

But, all too often, their stories of churches involved the pain of exclusion. It was not always easy for them to have active ministries in churches where they were excluded by buildings, by church cultures, and by the expectation that they were there solely to receive rather than also to give to the Church.

Over and over, in stories gathered for my research, I heard that disabled people wanted to “do church” differently. Churches usually don’t mean to exclude people, but that can be the unintended effect when they fail to think about disabled people’s needs in the ways in which they use their buildings and plan their services. As a result, my research participants said, disabled people themselves were the best experts to listen to on this subject.

This was the theme in one focus group made up of disabled ministers and lay people, in which Zoe called on churches to consult with their disabled members, who are the experts on their own accessibility needs. “We become our own expert, don’t we?” she said. “And that’s the biggest message in terms of access. How about asking people in your church how you can help them?”

And yet many of the people I spoke to felt that churches talked about disabled people, but didn’t often talk to us. As Charlotte said: “Christ often asks, ‘What would you like me to do for you?’ Does the Church ask us what we’d like the Church to do? Not so much.”

This was the experience of a married couple, Victor and Hazel, who are both blind. They were increasingly being excluded from their church, as its ways of “doing church” changed. In the past, they had been sent song lists, allowing them to learn the words of new songs in advance of services. More recently, the church was not keeping them in touch with the worship programme, as the songs were chosen spontaneously on the day by the worship band.

As a result, they couldn’t take a full part in the worshipping life of their church. Yet they had expertise in disability accessibility, and tried to offer simple solutions to these and other access barriers that they faced. But their church was not listening to their ideas or asking them what they needed. Seeing Hazel and Victor as people primarily in need of care instead of enabling their ministry as agents of change, their church continued to exclude them.

 

OF COURSE, many disabled people will need support from their churches to be enabled in their ministries and service, especially where churches are not easily accessible to them. I interviewed Faith, who was largely housebound, owing to chronic illness, and had little contact with churches as a result. No minister or pastoral worker was aware of her, and so she had to take communion alone, at home. And yet she had an active prayer ministry, and had set up an online prayer group for other chronically ill Christians.

Deirdre, too, who was unable to leave her bed, wanted to stay involved with her church and to take part in its prayer ministry. She had time and opportunity to pray — more than other many members of the congregation. Her church found it difficult to include her in prayer and worship, however, and she was reliant on a friend to provide her with recordings of sermons informally.

How might the church landscape be changing for her now, if her church is participating in recent “online church” developments inspired by the coronavirus?

Some churches may need to change in significant ways to enable the full participation and ministry of disabled people. Andrew, who is Deaf, left the church where he was training for leadership — and, much later, left institutional churches entirely — when it became more difficult for him to take part. His church could not meet his request for subtitled sermons.

“They said, ‘We can’t afford that for one person,’” he told me. Andrew then asked if he could at least have sermon notes shared with him — but sermons tended to be preached informally, without notes. That wasn’t how they “did church”.

Yet if the church had enabled Andrew’s ministry through better access, they might have attracted more D/deaf congregants to their church who would also have benefited from the arrangements, and Andrew might have been able to continue in his leadership training and attend church. What does change really cost?

Not all change will be difficult, nor will it always cost money or time. The most positive stories in my research were told by people whose churches listened to their disabled congregants, and responded with modest but meaningful efforts to include them more fully in church life.

Church culture can exclude, just as church buildings can; and the expectation to stand for songs or liturgy was a form of cultural exclusion for many in my research. For Susanna, who has an invisible chronic illness, simple words transformed her experience of church. “At the church I used to go to, the minister would say ‘Stand if you’re able, or sit if you prefer.’ That just makes such a difference,” she said.

 

THE theologian John Hull spoke of the prophetic ministry of disabled Christians. “Disabled people”, he wrote, “are not so much a pastoral problem as a prophetic potential.” Many of the disabled people in my research had wisdom that came through their lived experience of social oppression, not in spite of it — wisdom that they had gained from being marginalised to the edges of churches, and from which churches could benefit.

Zoe talked about the “upside-down Kingdom of God”, arguing that churches should see disability through the lens of Jesus’s values, not those of society.

Susanna’s perspective as a disabled person helped her to identify with the poorest and most oppressed in UK society. She said: “If Jesus was living here in this age, he would be with the people who don’t have anything to eat, with the people being sanctioned from benefits, with the people who aren’t able to work, and with the people that are lonely and need somewhere to go. So, as a Church, those are the people we should be honouring and ministering to.”

This outsider perspective helped many of these people to see past normative ways of “doing church” towards deeper engagement with the most oppressed in society. This was one aspect of their unique ministry, as disabled, marginalised Christians.

And this outsider perspective may be one reason why, at a time like this, a light is being shone on disabled people’s ministries. Disabled people are suddenly finding their experience of isolation and exclusion useful to the rest of the Church. The relevance of disabled people’s own online church groups, such as Disability and Jesus, is suddenly clearer than ever before. Disabled Christians’ in-person initiatives, too, have long been showing us how to “do church” differently.

The disability advisory group at St Martin-in-the-Fields organises an annual conference run by and for disabled Christians, in partnership with Inclusive Church. They lead the way in showing churches how to be more fully and meaningfully accessible to all. The expertise of these groups in opening up churches to those who find them to be places of struggle and exclusion could be invaluable while Covid-19 measures continue to restrict people’s ability to attend church.

The online church YouBelong was “founded by a person with chronic illness and disabilities, for the same”. As non-disabled people around the world join us in experiencing limited access to worship, the founder of YouBelong, Laura, says: “I believe God was preparing us to be ministers in this way, being trendsetters, before many of the wider Church even thought about online church or accepted it as a form of church.

“Now our time has come to show how church can be done, and that online church has an equally important part to play in God’s plan.”

 

MANY of the people I spoke to in my research, including those who are always isolated at home, have been asking for a long time to be part of finding more accessible ways to do church and to be Church. The Church is likely to learn a great deal from the current crisis about making services more accessible to those who can’t easily reach them. If this rethinking continues — and if churches don’t just turn off the live stream and go back to forgetting the always isolated older and disabled members after this crisis is over — then these changes may allow disabled people to be more fully included in churches in the long term.

The Church has an opportunity to listen to and learn from the ministry of disabled Christians — which many of my research participants longed to exercise. The question, now, is whether it will. If not, institutional churches may become increasingly irrelevant to those disabled Christians who have been establishing their own ministries to each other in new spaces on the edge of the Church.

 

Dr Naomi Lawson Jacobs is an autistic disabled researcher-storyteller and disability equality trainer. Drawing on the principle of “Nothing about us without us”, the author sought responses and quotations for this article from disabled Christians only. Thanks are expressed to the participants who gave their stories for her research project, and to Fiona MacMillan for her assistance with this article.

naomilawsonjacobs.com

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