Would you like to dance?

By Andrew Humphries

Like many young people in high school, Meredith Allan had dreams of pursuing tertiary education.

Nothing unusual in that, you might think, except that physical mobility issues and no voice mean everyday life is a constant struggle for her.

Even more frustrating is that Meredith, like so many Australians with a disability, is immediately pigeonholed because of her circumstances.

The assumption automatically made by many able-bodied people is that she is somehow inferior to them.

“We want to be treated like a regular person (but) many people have a preconceived attitude towards people with disability,” Meredith says.

In a speech to a United Nations disability conference in 2019, Meredith outlined what that meant as a young student.

“As a person with a disability, our abilities are underestimated by many in the community, including teachers,” she told the audience.

In high school, Meredith’s father was told by a teacher that his daughter “has unrealistic expectations (because) she wants to go to university”.

Meredith was fortunate, though, because one teacher believed in her and that was enough to make a difference.

“That teacher knew my abilities and my goals, and did the background work (to help me),” Meredith recalls.

“She was my maths teacher, and she knew she couldn’t take me further (but) this gave me the opportunity to get the education I had always hoped for.”

Many years later, Uniting Church member Meredith is a respected academic and is on the board of the National Disability Insurance Agency.

As Meredith was growing up in Australia, about 2500km away in New Zealand a young Auckland woman was also making her way in the world, determined to ensure that speech and co-ordination impairments would be no barrier to achieving her dreams.

By 1986, Vicki Terrell was studying sociology at Auckland University and would go on to graduate with Honours in a Masters degree, before adding Graduate Diplomas in not-for-profit management and theology to her resumé.

An Anglican priest, Vicki now works as a disability ministry educator in the Anglican Church of Aotearoa, New Zealand and Polynesia and is on the board of CCS Disability Action, a major disability organisation in New Zealand.

In joining the priesthood, Vicki followed in the footsteps of her mother, who was heavily involved in the church and was admitted as a priest in 1980.

“I was born into the church and into disability, and these have been dance partners throughout my life,” Vicki says.

“I have been actively involved in Anglican parishes and various Christian groups throughout my life.”

Meredith and Vicki joined forces in June, albeit in different countries, when they were keynote speakers at the launch at the Centre for Theology and Ministry in Parkville of a book celebrating 25 years of the multi-faith disability and spirituality movement in Australia and New Zealand.

‘Reflective Being Being Reflective’, published by the Synod of Victoria and Tasmania, was edited by Jayne Clapton, Trevor Parmenter and the Synod’s disability inclusion advocate Andy Calder.

The book explores issues of faith and meaning among people living with disability that have emerged through six conferences, the first in 1996.

Andy’s interest in the disability field comes from personal experience, after a work accident in Darwin in 1986 left him with serious injuries requiring three years of rehabilitation.

“That encounter with the experience of being disabled had a big impact on me in terms of working out what the meaning of it all was,” he says.

“Before Ministry I had worked in the disability sector within recreational services for many years, so I had been shaped by that experience of working with people in a range of different community contexts.

“It was a blending of both lived experience myself and a sense of connectedness with people who were living with a disability, in terms of my interest and expanding my curiosity about it all.

“And that’s why I am in the role that I am, because I expressed an interest at a very early stage in my Ministry formation that this was an area (that I felt called to) and wanted to explore what the church could do in this space.

“It’s really born out of a sense of wanting to see a better deal for people who have experience of disability.”

Andy attended the first conference in Brisbane as a delegate and also organised the two conferences held in Melbourne, in 2001 and 2016.

“The backdrop to that first conference in Brisbane was the conversations that had been taking place globally for 20 years beforehand that had emanated from the civil rights movement, where a lot of disenfranchised groups of people, including people with disabilities, became part of that movement towards emancipation and greater participation in society,” he says.

“That first conference became the springboard for subsequent conferences that were more intentionally focused on lived experiences and stories of people, practitioners and people of faith, and also morphed into multi-faith dialogue as well, so it evolved over time.”

The obvious question, then, is what does disability and spirituality mean to Andy?

Truth be told, it’s a bit like asking how long is a piece of string?

Not surprisingly, there is a long pause before he gathers his thoughts and answers.

“I think the essence of people is contained in their spiritual expression, light and world,” Andy offers.

“When people have the experience of disability, there are certain questions that arise around that in terms of ‘the world tells me something about how I am perceived, which is that I am perceived as being different and sometimes have to live with a sense of shame about what is happening or has happened to me’.

“If people can draw on a sense of spiritual teaching or insights, it can give them some support, sustenance and empowerment in that journey, and I think that is to be encouraged if it is for the betterment of the person.

“Many people with disabilities are clear that they want to be part of faith communities and part of conversations about their faith, and not to have it assumed that the case is otherwise.

“They would like to be participants as anyone else would expect or anticipate to be.”

Master of ceremonies at the launch in June was Mary Henley-Collopy, a Thalidomide survivor and long-time friend of Andy, who says the book stands as an important document detailing the intersection between disability and spirituality.

“I see the book as an historic manuscript detailing the journey of disability and spirituality and, as the MC, I called it the dance between the two,” Mary says.

“I think it was important to revisit the reflections at conferences that people gave at the time and to say, ‘where do I stand now and what has changed’.”

On her own life journey, Mary has seen an evolution in the thinking around how people with a disability are viewed.

“Historically people with disability were seen through a medical lens and so they were the grand sum of their disability, but now people with disability are seen much more holistically and they are seen as being capable of making decisions,” she says.

“(Something like) government legislation has been enacted that absolutely supports the journey of people with disability to reach the independence that they choose in the way that they choose.

“So spirituality has become a standard for everyone in Australia but it’s not something that has been particularly embraced by the disability sector, and there have been some quite negative reasons for that.

“For example, a lot of people with a disability have had examples of people coming up to them and saying, ‘if you come to our church, we could heal you’, and so there was a sense that people with a disability weren’t whole, whereas what the whole disability inclusion movement in the spiritual realm is about is saying that ‘we see you, we see you as a person and we see you as a being who has a spiritual dimension to you’.

“In some respects, the movement really enhanced the conversation around that.”

In considering disability and spirituality, Andy says, we are asked questions that many people born with a disability may grapple with.

Those question sometimes go to the heart of what faith means to them.

“A lot of people wonder at the question of, ‘why me, and what sense do I make of this in terms of my own faith story?’,” Andy says.

“It’s about what are the stories and images that resonate with me and what can be supportive in terms of my own journey, and that goes to the whole issue of inclusion, not only in church life but in broader society.

“(So it’s a question around) how can we as a church be part of a movement that questions and challenges ableism and ableist attitudes that are encountered daily by everybody, so there is a greater sense of justice for people to be participants.

“There is a strong sense of social justice prevalent in all of this as well.”

Ask Vicki what disability and spirituality means to her and what comes back is a reflection on the importance of embracing everyone at all times.

“The intersection of spirituality and disability is about being human in a fundamental way,” she says.

“It is about learning to live with limitations that we all have as human beings and learning to flourish in our lives.

“It is embracing our humanity in all its joys and challenges.”

Vicki recalls the first disability and spirituality conference in 1996 as being pivotal in shaping much of her thinking around the subject.

“When I attended the Brisbane conference in 1996, I was starting a journey to find an authentic theology that spoke into my lived experience of disability,” Vicki recalled at the book launch.

“I had just read ‘The Disabled God: Towards a liberatory theology of disability’ by Nancy Eiesland, where I found a powerful narrative that spoke to my experience.

“In Brisbane I found a community who were grappling with spirituality and disability seriously and it caused me to reflect on my life’s dance partners in new life-giving ways.

“I have been privileged to attend all the conferences and build the network in New Zealand.

“Reflecting on this journey, it is often in the unplanned happenstance where the light gets through, the spirit moves, and life and hope are renewed.

“Time and again I would be worrying about things, then something unexpected would happen and things would fall into place.”

It was at these conferences that inspiration came from like-minded people on the same wavelength as Vicki.

“The conferences were a wonderful mixture of intellectual stimulation, challenging ideas, personal exploration, practical sharing and good fun,” she says.

“Papers provided new ways of reflecting on disability and spirituality (and) different ways of being human, challenges to wider society on spirituality, and challenges to faith communities and society to be more inclusive in their thinking and practical ways.

“Some of this thinking have led to some change in faith communities and society (and) a lot is still being advocated for.”

That sense of humanity, Vicki recalls, was what made the inaugural conference in 1996 such a groundbreaking event.

“My overarching memory was here at last was a place to be real about being human in all of its complexity,” she says.

“The church could learn about what it is to be human, spiritual and temporal from the intersection of spirituality and disability (and) this is one of the gifts that the movement can offer the church.

“It also brings out the gifts of all people to be the body of Christ (because) no one person can do everything.

“Often in the church, as in society, we place unrealistic expectations on our leadership and then wonder why things go awry.

“The (disability and spirituality) movement teaches us to value and utilise all people in the community of Christ.

“We are called to serve each other (and) we need to figure out what each person is capable of.”

For Meredith, a strong faith has been a constant and reassuring presence in her life.

“I have always believed in God, and growing up on a farm the beauty of creation was all around me and what I heard at church on Sunday was with me,” Meredith says.

“God knows me, (and is) with me all the time, calming me in both good and bad times.

“It gives me strength to face today and tomorrow (and) God is welcoming when most of the world is not welcoming.”

Mary admits to a more challenging relationship with her faith, even as it informed much of her childhood growing up as one of eight foster children.

“I grew up in a very Christian family, but I was brought up in a fire and brimstone, very fundamentalist church, and my family did not allow us to be angry at God, yet anger can be integral to grieving,” she recalls.

“As far as my family was concerned, for people like myself born with a disability it was just a case of getting on with things, but (that attitude) lacked the ability to say ‘I’m not happy with what I’ve been given’.

“We were always told it was God’s will that we had a disability and that God doesn’t trust everyone to have a disability, and that was head-spinning stuff to me at the time.

“It just didn’t make sense to me and still doesn’t (and) there comes a time, particularly during your teenage years, that you really do ask questions like ‘who am I and what am I going to contribute to society and how am I going to be able to contribute to society?’.”

Those questions only increased for Mary as she got older, as did a level of anger that, for the most part, she was able to keep hidden.

“My anger about being disabled probably came most when I left home and went to another Baptist church,” Mary recalls.

“(But) I was able to connect with a wonderful Minister there who did allow me to have that dialogue with God and did give me the permission to be angry at God.

“You see, with no arms, punching a pillow or slamming a door to express anger just doesn’t cut the mustard, so I used to internalise a lot and it becomes a thing of having to be thankful to everyone around you because you need so much help.

“Don’t get me wrong, I was thankful, but to be thankful to God for my disability was something that I couldn’t grasp at the time, and this Minister allowed me to park my feelings and (suggest) that one day you may be able to reconcile it all if that is what you want to do.

“I think, from that moment on, I never had the need to be angry with God because I had vented and asked him why and that is all I had wanted to do.

“I also knew God as a loving God. As a child, our foster mum read the whole Bible to us and I’m grateful for that because I can draw on what I remember from it and I apply that to my life now.”

In reflecting on her faith, Meredith talks of the “non-anxious presence”, a concept introduced by writer Bill Gaventa 20 years ago.

“Bill went on to say ‘it is being there without the expectation of having to have the answers, but rather, to listen and hear the lamentations, the anger, the joy, the dreams and the frustrations’,” Meredith said at the book launch.

“Bill also quoted a father of a daughter who had a disability, who said ‘if you remove all the physical barriers, you only create a lonelier world’.

“The stories of disability are increasingly stories about loneliness. Physical barriers are only part of the problem, social barriers are the real issue.

“Today, as we reflect on 25 years of the disability and spirituality conferences, I want to talk about the importance of the non-anxious ministry and the invisible barrier which is always there.

“We need, just as all people need, the spiritual presence of a non-anxious God.”

Meredith related a story about her own situation during lockdown in Victoria to illustrate the importance of the non-anxious presence in her life.

“Last year I was admitted to hospital for what was meant to be two to three weeks, but ended up being three months,” she recalled.

“The majority of the time it was during lockdown (and) I learnt the fragility and vulnerability of having paid support surrounding me 24 hours a day, with no visitors allowed.

“One day my brother delivered something to the front door of the hospital, to be given to me.

“He then went to a nearby coffee shop and stared up at my window. The bereavement of not being able to connect face to face was felt on both sides.

“I could text or email family and friends but it was not the same, true feelings were not shared as easily through the technological intermediary.

“I valued the pastoral care team visits, whose non-anxious presence gave me a sense of humanness in the lengthy conversations. The non-anxious presence was there to listen.”

Meredith laments the fact, though, that for many people with a disability, meaningful and sustaining friendships can be difficult to form.

“The real barrier within the disability community is the decreased opportunity to make friendships that are non-anxious and are enduring,” she says.

“I am fortunate I have many friendships from school, university, church and work.

“How many people with a disability have the opportunity to go to a higher level of schooling or even enter the workforce?

“Most people with disability are surrounded by paid support workers (and) there is little opportunity for a conversation or transferred thoughts that lead to a relationship beyond caregiver and client.

“There is little opportunity to let the individual identity within themselves be known.”

In New Zealand, Vicki’s faith was further strengthened as an adult by two key experiences.

“As a young adult I had a second conversion experience in the social justice gospel, through (the 1981 protest movement against the South African rugby tour of New Zealand) and this has shaped my faith,” she says.

“Reading Nancy Eiesland’s book, ‘The Disabled God: Towards a liberatory theology of disability’, was my third conversion experience, in seeing my impairment as part of who I am.

“This gives me a perspective on Christian faith and what it is to be human: made in the image of God and a creature of the earth with limitation.

“My faith is very important in my life (and) I find the constant call of Jesus to love and look beyond our own interest both a challenge and (something that) gives hope.

“Also, the theme of being loved and accepted for who we are is another touchstone of faith which helps me deal with disability.

“Over the years I have gone from wanting God to take away my impairment to embracing it as part of who I am.

“This has been healing in itself (and) now I find that my impairment has become integral to my vocation and something I am privileged to offer the church.”

In talking of her faith, Vicki makes the distinction between impairment and disability.

“The phrase ‘impairment and disability’ means impairment is cerebral palsy, with speech that is slow and indistinct at times, and weird co-ordination,” she says.

“Disability is the social process of me interacting with society and the attitudes of people who do not understand or who are afraid (and) as a priest I have to wrestle with both things.

“It is out of wrestling with impairment and disability that my ministry has come.

“This was not my plan when I offered myself for ordination but God has a funny way of upending our plans.”

As strong leaders, Meredith, Vicki and Mary have been tireless advocates for the rights of people with a disability, a cause that Mary says now needs to be taken up by a new generation of activists.

“It’s just so vital that the work of Andy Calder and other leaders in this space is continued by others and I think it’s incumbent on our churches to look at how that might be done, but it’s also incumbent on people with disabilities to say what their needs are,” she says.

“Congratulations must go to the Uniting Church for even having Andy’s position in the Synod and I so wish other denominations and faiths would do the same.

“But the questions to be asked are, ‘who are the next leaders going to be and who will step up and continue this conversation?’.”

Those leaders, says Mary, must be people with lived experience of disability who are committed to working relentlessly in advocacy roles.

“I think it’s important that the baton is passed on, because a lot of us who have been in this sector have been in it for a very long time, but we have to find people to pass it on to,” she says.

“So I do wonder, who is the next generation going to have? I hope younger people with disabilities can take up the baton, but I am not seeing many signs of that at the moment.

“I don’t know that young people have that fire in the belly that we used to have.

“If they do it’s about climate and saving the planet which, don’t get me wrong, is important but there isn’t that fire in the belly about simply being kind to one another.

“We saw glimpses of it during COVID-19 and there are many, many lessons we could learn from that where people really did support each other, but as soon as the masks came off the kindness came off.”

It is those acts of kindness that Mary says can strengthen the connection between people with a disability and those without.

It can, she says, be something as simple as sharing a cup of tea.

“I don’t talk in terms of barriers because it’s a term that is bandied around far too much, but when I talk to a person over a cup of tea, they are forced to ask me where I want my cup of tea placed, so they are forced to put it into my hand and then there is an ability for them to touch me,” she says.

“It is only when people touch us, and I say that both figuratively and literally, that they realise we are no different to anyone else.

“In my case my hand just happens to be in a different place to theirs but my need for a cup of tea is just the same.”

As he reflects on the book covering 25 years of the multi-faith disability and spirituality movement, Andy’s hope is that it will act as a conversation starter for those with an interest in that field.

“The title of ‘Reflective Being Being Reflective’ came out of conversations with 12 people in Australia and Aotearoa New Zealand over an 18-month period around the content, purpose and meaning of the book,” he says.

“It also reflects people’s development and changes in their thinking over time and whether what they said then was what they would say now, and that was what prompted people in terms of their responses and what quite a few articles in the book are about.

“We also reproduced some other articles that had previously been part of other conferences because we felt they carried a particular weight for the book.

“It’s a curious book in a way because it has some academic content but it’s also the narrative of the (multi-faith disability and spirituality movement) and some of its features, as well as the thinking and theological perspectives that people have, which are quite diverse.

“I hope that people reading the book will have their imagination fired, their curiosity aroused and for more conversations to be had among people who are interested in this particular intersection between spirituality and disability.

“It’s an invitation for people to share something of their own perspective, when they might not previously have had that opportunity, or thought that (their story) wasn’t important.

“So if it helps to unlock further conversations and perspectives it will have served a really good purpose, as well as being a documentation of history.”

While faith has been a massive part of her story as a person with a disability and has deeply enriched her life, Vicki suggests faith communities work best when they embrace everyone equally, allowing “all people to flourish” regardless of their circumstances.

“As for society in general, faith organisations are an important part of our community and they are a social hub, as well as providing spiritual sustenance,” she says.

“It would be arrogant and patronising to say that faith communities should be more important in the lives of disabled people than others.

“Faith communities need to provide social and spiritual sustenance to all people (and) I would hope that the role of faith organisations would encourage all people to flourish, not just disabled people.

“(But) faith communities also need to embrace people with disabilities as people on the journey of faith like themselves and develop relationships of equality and mutual support.

“As a bare minimum, faith communities need to make sure that everyone has access to buildings and programs, and need to embrace people with disabilities as people on the journey of faith like themselves, and develop relationships of equality and mutual support.

“Although faith has been important in my life journey as a person and I do know it is important to some of my disabled mates and colleagues, I don’t want to presume that for a person with a disability to flourish they need faith or faith organisations.”

In offering a final thought, Meredith returns to the theme of the “non-anxious presence” when she considers the role spirituality can play in those living with disability.

“(Biblical scholar) Kylie Crabbe wrote, ‘as we reflect on who we are as the church, may the sense of our shared vulnerability never drown out the much-needed voices of those who identify as living with a disability. Indeed, the biblical account tells us that these voices occupy a central place’,” Meredith said at the book launch.

“We have all experienced the isolation of lockdowns, but not everyone is coming back into society as we once understood it to be.

“Watch carefully, note who is not returning, and provide a non-anxious listening ear.

“They may not return in the same way but they will know the relationship is still there.

“We are no different from anyone else, we are all children of a loving and listening God who knows our pains, and shares in our joys, with the non-anxious presence.”

‘Reflective Being Being Reflective’ is available in Kindle form from Amazon and as an e-book from Booktopia