Kirk Patston a lecturer at SMBC and his wife Lisa Patston dream that their son Jerrah and other Neurodiverse people will live in a home “where they are safe and known, connected and growing, celebrated and loved.”
The NDIS will help, but their dream will take more than that. With other families and supporters, they have set up two organisations to tackle different parts of their vision.
Hope Christian Homes will buy and maintain houses within walking distance of a church – because the other arm, Our Place Christian Communities, will nurture “mixed-ability, neurodiverse, residential Christian community in living relationship with local churches.”
Our sense of safety comes from being known, Kirk Patston says. “I bet many of us feel the thought of going to a hospital or a nursing home. And we fear because we know once we’re in a place like that, we’ll have no say over who it is who actually turns up to look after us. And we will have no say in the culture and systems that surround it.”
People living with disability have that experience even if they are young.
“So hopefully, a house that’s walking distance to church and church or churches and hopefully even transport and shops,” Kirk Patston tells The Other Cheek. Because of NDIS funding guidelines, they will ”probably need to group together three people who are NDIS participants because of their neurodiversity. And at least one neurotypical person living there as well. But we are aware of one house where the experience of autism is such that having somebody else live with them, may be too overwhelming.”
“We’re imagining groups of neuro-divergent people getting together and say, ‘Hey, we’re friends. Why don’t we share a house together as friends?’”
(“Neurodiverse” captures the idea that people experience and interact with the world around them in many different ways. It describes people living with Autism or intellectual disabilities like Jerrah Patston, but can be used more broadly,.The word Neurodiversity was invented by Judy Singer, an Australian sociologist, to promote equality and inclusion.)
It begins with one house, but the model is for that house, once it is paid for to support a second and a third, creating more and more opportunities for neurodiverse people, and for those who live with and learn from them.
As Patston makes it clear it is not about building a new generation of institutions, or a one-way charity. They want to model mutuality with neurodiverse people genuinely contributing to the community around them. “We’re not wanting to have that sort of charity model where the people with disabilities are the ones who are acted upon. But that there’s mutuality so that the people with disability are helping that person grow as a disciple of Jesus, just as that person’s helping them.
“We’re wanting to support connections to local churches. So the Our Place Christian communities will have also an educational and advocacy role. So we are discovering already, sadly, that a lot of parents are exhausted and find it hard to advocate for the person at church.“
Kirk Patston has been playing what he calls a “long game” on disability. “So back in 2007, I went to the “Society of Biblical Literature [a major worldwide conference] and discovered that there was even a thing called Disability Theology. I actually had a sense of vocation at that point. And I thought, what can I do, given that? I’ve got this lived experience with Jerrah. And I thought because I lecture at SMBC, I do have an influence on church leaders and missionaries. And so then I deliberately thought, right, I’m going to get a PhD in this area. And I’m going to write a postgraduate unit of study for the Australian College of Theology.”
Alongside Louise Gosbell, now the Principal of Mary Andrew College, who was researching Disability and the Gospels, the Australian College of Theology (an umbrella group for many Bible colleges) now has both an undergraduate unit called ‘Disability and the people of God,’ and a postgraduate unit, ‘Disability, Theology and Religion.’ And so we’re already now starting to be able to train missionaries and church leaders in some of these issues. So that’s, that’s my long game approach.”
The Australian disability landscape includes ventures that only exist because of the visions of parents like Kirk and Lisa Patston. These include many housing providers and social enterprises. A driving force is knowing that they won’t be around forever to look after their neurodiverse offspring. Famously it was meeting a gathering of seventy-year-old parents that set ALP Minister John Della Bosca on to early lobbying for the NDIS.
But the combination of Hope Christian Homes and Our Place Christian Community that links church and intentional Christian community to housing offers a future for Christian families in particular.
The project is poised at a difficult point with the sudden inflation in building costs leaving the first Hope Christian Homes house $400,000 behind. (You can donate at hopechristianhomes.org.au) Meanwhile building community goes on with ‘making your church a disability-inclusive community’ workshops being run by the Our Place Christian Communities (ourplacecc.org.au)
The Other Cheek asked Kirk Patston to play a “short game” and give us an elevator pitch about why a church should work hard welcome people living with a disability.
“So I’d start by saying that in Luke 14, Jesus teaches what I think is teaching directly not as a not a parable.
“He directly tells us to invite the poor, the crippled, the blind, and the lame to the table with us.
“Interestingly, he makes the comment and you will be blessed, that he may be talking about being blessed on the last day, but he could also be meaning, you’ll be blessed here and now.
“Because what you’re discovering in people with disabilities is all kinds of gifts that you didn’t realise where they are. And in your relationships with those people with disability, they’re going to call forth the new aspects of your faith and your character that you perhaps haven’t had needed to draw on. So it’s going to be, I think, in the end, a mutually blessing experience.
“I also think that Australian churches at the moment need to show the world that we are The people who do good and do justice, that we are places of goodness and beauty and truth. And there are actually few places in the world where we feel we can just leave Jerrah without a support worker. But church is one of them. And for us, that’s amazing.”
Image: Jerrah Patston (centre) looking at plans with board members of Hope Christian Homes Used with permission
Please note that the Our Place Christian Communities website is ourplacecc.org.au (spell checkers seem to change it to yurplace).
and fixed it in the story!