LOVE IS, LOVE ISN’T, LOVE ACTUALLY 

JACK*  

A large, ‘successful’ church: good-looking successful people. And if you’re female, being blonde (whether by birth or by bottle) helps. If you’re popular in the media, so good. We love you!  

But you? You’re in a wheelchair? We’ve got a ramp, and a wheelchair loo [good for storing gear in] – what more could you possibly ask?  

Well, I’d like to feel as welcome as the blonde and the media type who get lauded. I’m not actually asking to be lauded, but rather to be valued, to ‘feel the love’. I don’t. After more than a year, I leave. I don’t think anyone notices. 

For five years I don’t go to church, except when I’m asked to speak. The ‘successful’ church didn’t know I could – I can read only minimally, I cannot write, such is the nature of my impairment. I appeared, to them, as more of a target for ministry rather than one who could actually offer it. So when I go to a church now it is by invitation: they invite me to speak, to challenge, to inspire. Which I do – nationally and internationally. In person, and via various media. And I’m accepted by those who stop to chat, in person and virtually. Thank you for loving me.  

******* 

JILL* 

I’m eight years old, and have been variously described as autistic, ‘on the spectrum’ or neuro-diverse – the latter term being increasingly used to recognise the rich differences, abilities and strengths I offer.  

At kids church one day I run around randomly and unpredictably. I don’t mean to hurt or threaten anyone, but kids don’t understand me, and some of their folks are uneasy with my behaviour. So the church bans me from the premises – kids church, big church, the lot. Stay home, and to sweeten the impact (edict, actually) they offer to provide a Sunday babysitter for me at home, meaning the rest of the family can still go. That won’t work – I can easily run down the road to the church only to be told I’m banned. Jesus said, ‘suffer the children…’ Being different, by exclusion I do suffer. Is that really what Jesus meant? My family suffers also, my exclusion excludes them.  

I’m twelve now. God’s ‘representatives’ apparently don’t love me. Does God love me?  

******* 

JACK* (again)  

(I know Jill. She is my niece.) 

For five long years I don’t have a church that I can call my church. My church participation is when I’m invited to speak because the host churches (bless them) heard of the ministry I’ve offered nationally and internationally. In serving and giving, I’m sure receiving. Thank you host churches, thank you Lord. 

Time passes. Five long years. During this time, I go each summer to a Christian music festival. One of the volunteers there is a pastor the rest of the time. He greets me and chats, I get to know him year-by-year. ‘I think I might come to your church,’ I tell him. ‘That’ll be great!’ he replies. So I do. Immediately I feel at home, I fit. Why? I’m accepted as I am, loved as the person I am, created by God – albeit not quite the same format as those ‘good-looking successful people’ of elsewhere. Soon I’m asked to lead into the communion part of the service. The pastor later tells me, ‘I will never forget that first occasion, there wasn’t a dry eye in the house, it was spectacular.’ He says I’m an encourager. One time I suggested a way of improving something. My idea was adopted.  

******* 

IMAGINE (as first imagined by St Paul in his letter to the Corinthians, reinterpreted by J. Lennon in 1971, updated in 2012 by Wes Walter) 

Imagine that in heaven, 

There’s access to the gate. 

Disabled enter, welcome! 

No plan to isolate. 

Imagine all the people  

Living all as one… 

 

Imagine there’s no barrier –  

It isn’t hard to do. 

No need to discriminate –  

Embrace disabled who 

Know that they are people  

Living life with you! 

 

You, you may say  

I’m a dreamer,  

But I’m not the only one. 

I hope some day you’ll join us, 

And the Church will be as one! 

 

Imagine a Church inclusive: 

Everybody welcome here! 

Disabled right there, valued 

Not patronised, no fear! 

Imagine all the people  

Living all as one 

 

You, you may say 

I’m a dreamer,  

But I’m not the only one. 

I hope some day you’ll join us, 

And the Church will be as one! 

 

******* 

SO, WHO IS… 

…on the outside edge of our [church, or whatever] community? 

… a little ‘different’ from our ‘average’ participant? 

 

…AND HOW DO WE… 

…demonstrate that we welcome diversity in our community? 

…show genuine non-patronising love? 

…welcome the God-given gifts of those whose life and gifts may be a little different from our standard? 

  

******* 

Writer Wes Walter* is a Kiwi Christian leader with decades of pastoral experience in the local church and wider ministry. He knows both Jack and Jill.  

 *Not my real name 

 

______________________

 

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Contributing to the Transformative Work of the Body of Christ

Written by Coralie M. Bridle 

Introduction 

My eldest son, Samuel, gently led me into the world of sustained theological enquiry. In doing so he has made extraordinary contributions to my life without leaving the confines of his wheelchair. As catalyst for questions, he does not have the vocabulary to pose, he has beckoned me to engage more honestly with my faith and its outworking in real life. As a living icon of Paul’s call to contentment in all circumstances (Philippians 4:10-13), Samuel has embodied grace, patience, and perseverance, from within a physical and intellectual embodiment that some would judge intolerable. As I have journeyed with him in his reality, his contribution to the Body of Christ is, in my humble estimation, simply immeasurable.  

The broad focus of this current series of articles has been the study of inclusion from a biblical perspective. The series has drawn on 1 Corinthians 12 and Paul’s use of the body as a metaphor for how the church is called to honour and minister in union with all members of Christ’s body. No-one on their own makes up that body – nor is it made up of people who all act, speak, think, or contribute in the same manner. We have already considered the notions of unity and honour. In this article we turn towards an examination of the contribution that people living with disabilities make to the Body of Christ.  

Drawing on theological voices from around the globe and my own research within congregations of The Salvation Army in New Zealand, I seek to challenge pastors and congregants to reconsider the contribution that people living with disabilities can make in faith communities. In doing so, I also draw a distinction between contributing in a utilitarian sense – this is not about handing out “appropriate jobs” to disabled people in your congregation. Rather, it is about contributing to the unfolding reign of God’s Kingdom on earth as we seek to understand, worship, fellowship, and participate together as the Body of Christ.  

Experience and research across various denominations of the church indicates that congregations tend to consider themselves welcoming and inclusive but that the received experience of those living with disabilities is somewhat varied (Carter, 2020). For example, when Disability Theologian, Thomas Reynolds took his son (who lives with disabilities) to church— he was met with a wall of misunderstanding. In essence, to be included in that context meant that his son had to act like everybody else. His son was granted access to the church, but it was on their terms. In contrast to this experience of church, Reynolds proposes the notion of “deep access.” He writes:  

Deep access means recognizing difference and diversity, bodily and neurologically, and welcoming it as part of us—not something other and abnormal to be remade in the image of the same as normal. It is not so much a matter of welcoming you so you can be part of us on our terms, but rather so you can be with and augment us differently, on your terms as well. (Reynolds, 2012, P. 218)  

Reynolds goes on to counsel that a “spirituality of attentiveness” leads to the embodiment of deep access in the church. This is important because if we are not deliberately attentive to the disability conversation, then we will fail to recognise and facilitate the contribution that people with disabilities are willing and able to make. Neurodiversity does not remove us from our “image-bearing” personhood and responsibilities. It takes intentional, up-skilled, and often tiring effort to enable “deep access,” for people who are not neuro-typical. The exact same thing can be said for the so-called neuro-typical – we just seem to be more finetuned to their access needs. 

In the early days of life with my son, Samuel, there were times when I honestly felt like the outside world was more in touch with our reality than the church was. I do not say this lightly, nor as an indictment on those who have journeyed with us. The prayerful intercession and practical support we have received during difficult and more settled seasons, is known to God and received by thankful hearts. However, God has used the world beyond the church doors to soften the bristly edges of our reality. Further to that, an increasing awareness of the diverse discourses and models associated with disability, has enabled me to critically engage with some of the potentially unhelpful postures that present themselves within the church setting. For example, here in New Zealand, it is estimated that 24% of the population live with a disability (www.stats.govt.nz). While specific data regarding disability does not appear on any Salvation Army statistical measures, anecdotal evidence suggests that congregations within our context do not mirror the wider societal reality. I suspect things are not very different in other denominations. Brian Brock (2021, P. 165), for example, notes that the sociological evidence that people with disabilities are not present in church is overwhelming. 

The reasons for this are, of course, far from simple. However, I would suggest that a robust theology of disability can mitigate against unhelpful responses towards those whom we might perhaps mistakenly consider, “…weaker but indispensable parts,” in Paul’s discourse in 1 Corinthians 12:22. Numerous Disability Theologians have now been used of God to help me wrestle with some of my questions around the notion of contribution in relation to people living with disabilities. Jill Harshaw (2016) has enabled me to see the prophetic role embodied by my son. Jill’s daughter Rebecca, lives with profound intellectual disabilities and similarly to my son, is unable to speak with words. Her investigation of the role and credentials of biblical prophets underlines the possibility that people who cannot speak may be involved in prophetic ministry. An encounter with them can be an encounter with Jesus (Harshaw, 2010, P. 318). 

John Swinton (2012) has helped me understand that human difference is the norm and that in Christ – everyone belongs. He has alerted me to the difference between thin and thick understandings of inclusion (Swinton, 2012, P. 181). For example, participants in my research noted that the “door welcome” at church was warm (thin inclusion) but the move from welcome to a sense of belonging (thick inclusion) in the church congregation was missing. Swinton (2012, P. 183) proposes that the movement from inclusion towards belonging is a movement towards love. In such a movement we can discover a reciprocity of contribution if we are engaged and alert.  

Erik Carter (2020, P. 172) has helped me discover the contours of true belonging. His framework outlining ten dimensions of belonging graphically underlines the desire of every human heart. His research demonstrated that people with disabilities experience belonging when these dimensions are incorporated into congregational life: to be present, invited, welcomed, known, accepted, supported, cared for, befriended, needed, and loved. The notion of being known is significant in the context of contribution to the life of the congregation. It is only as we take the time to really know someone who lives with a disability, to move beyond assumptions and labels, that we will recognise the contribution that they are making to the Kingdom of God. 

The call of Tom Reynolds (2012) towards deep access mentioned earlier, has caused me to reconsider notions of power and decision making in regard to people with disability. This is a move beyond mere presence in our communities, to one of participation. One of my own research participants stated it quite emphatically when he noted that people with disabilities do not want to be consulted solely on where to put the disabled toilets or parking spaces. Rather, they have contributions to make on matters of finance, pastoral care, vision casting, worship planning, and numerous other facets of church and community life. 

Deborah Beth Creamer (2009), who describes the human experience as one bounded by limits, has underscored the mutuality embedded in our human experience; we all experience limits – we all need support – just in varied ways. Disability is not something to be viewed as a negative experience of life. Rather it is an intrinsic and unsurprising part of being human (Creamer, 2005, P. 82). In this sense people living with disabilities contribute a salient reality check. 

Brian Brock (2019), who reclaims early church understandings of disability, urges the church to again see people with disabilities as equal servants of God’s redemptive work in the world. Samuel and I are part of that redemptive work. Of course, we know that this work is completed in one sense (John 19:30), but not in another (Matthew 28:16-20). Further to this, Brock (2019, P. 53) proposes that people who carry the label disabled, in the current age, revive our collective wonder over God’s creative intention for every human being.  

One of the most significant findings of my own research is that people living with disabilities do not equate their disability with disaster. Certainly there are associated hardships, or difficulties, but these do not eclipse their desire and commitment to live ordinary lives. All of the research participants expressed the desire to contribute in a meaningful way within their faith and social contexts. This was not seen as a measure of their usefulness, but as an expression of doing the work of the gospel alongside others. Such endeavour was not without personal cost. Family members highlighted the relentless and chronic nature of many disabilities, calling on congregations to recognise how they can contribute to the well-being of their brothers and sisters in Christ. Brian Brock (2021) names some of the contributions that congregations can make to the flourishing of people with disabilities: advocacy, respite, friendship, discernment, hope, and reconciliation. 

Finally, Brian Brock’s work in reference to the Body described in 1 Corinthians 12 is a salient conclusion to this article. He examines “the peculiar togetherness,” that is the Body of Christ – a togetherness that eliminates notions of us and them (Brock, 2021, P. 201). He writes,  

Paul understands every member of the church as an active giver or conduit of divine love, a giving that is not reducible to any person’s supposed physiological or intellectual deficiencies. (Brock, 2021, P. 202) 

Conclusion 

This article is ultimately an expression of hope. As fellow members of the Body of Christ, we are called to cooperate with the Spirit in enabling all people to flourish and participate in the kingdom of God. There is always room for doing things in a more inclusive manner. We do not always get things right. However, acknowledgement of our mistakes is hollow if we do not seek to embrace and engage with those who have a message that needs to be heard for the sake of the Kingdom of God. Simply stated, we are not the ‘Body of Christ’ if difference, diversity, and the neural-atypical do not dwell and minister alongside us. Further, we have not told the story of Jesus, if we do not tell it in a way that connects with everyone longing to know the story.  

The Apostle Paul’s vision for telling this story was so expansive and so attentive to difference that he noted he had, ‘…become all things to all people, that I might by all means,
save some’ (1 Cor 9:19–23). Paul’s approach was creative and flexible. Perhaps also, by attending to timely words of challenge in regard to the contributive capacity of people with disabilities in our communities, we can witness and participate in transformative change for the whole Body of Christ.  

 

 

 ~In loving memory of Kevin Bridle~

__________________

References:

Brock, Brian. Wondrously Wounded: Theology, Disability, and the Body of Christ. Waco, Texas: Baylor University Press, 2019. 

Brock, Brian. Disability: Living into the Diversity of Christ’s Body. Pastoring for Life, edited by Jason Byassee. Grand Rapids, MI: Baker Academic, 2021. 

Carter, Erik W. “The Absence of Asterisks: The Inclusive Church and Children with Disabilities.” Journal of Catholic Education 23, no. 2 (2020): 168-88. 

Creamer, Deborah. ““God Doesn’t Treat His Children That Way”: Disability and Metaphors for God.” Journal of Disability and Health 9, no. 3 (2005): 73-84. 

Creamer, Deborah Beth. Disability and Christian Theology: Embodied Limits and Constructive Possibilities. American Academy of Religion, edited by Kimberley Rae Connor. Oxford, New York: Oxford University Press, 2009. 

Harshaw, Jill. “Prophetic Voices, Silent Words: The Prophetic Role of Persons with Profound Intellectual Disabilities in Contemporary Christianity.” Practical Theology 3, no. 3 (2010): 311-29. 

Harshaw, Jill. God Beyond Words: Christian Theology and the Spiritual Experiences of People with Profound Intellectual Disabilities London: Jessica Kingsley, 2016. 

Reynolds, Thomas E. “Invoking Deep Access: Disability Beyond Inclusion in the Church.” Dialog: A Journal of Theology 51, no. 3 (2012): 212-23. 

Swinton, John. “From Inclusion to Belonging: A Practical Theology of Community, Disability and Humanness.” Journal of Religion, Disability & Health 16, no. 2 (2012): 172-90. http://dx.doi.org/10.1080/15228967.2012.676243. 

 

 ______________________

 

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Honouring One Another

Written by Fiona Sherwin 

In recent years I’ve been doing a lot of thinking about inclusion and belonging. While the two terms are used synonymously at times, there are notable differences between them. Including others is an important practice. It’s an act of kindness and hospitality, but to include others only scratches the surface. When we include others we notice someone’s presence, but it is not necessarily an invitation to participate beyond the margins, I would describe it as a step aside to provide a space for them to enter.  To belong somewhere though goes deeper, it suggests that there is a desire for connection and for knowing. It suggests that each person is needed, and that we want to participate with them in a deeper way. I want to contend that when we belong somewhere, and when that belonging is known, then honour is found.  

It is important to acknowledge how I have joined the conversation of disability and belonging. I presently do not identify as disabled, but I have been welcomed to participate in the life of disabled people. When I was a little girl, my Mum used to be the weekend charge nurse of one of the IHC hostels and she used to take me to work with her. The residents became my friends. When I was 15, I went to my first Elevate camp at Totara Springs. Everyone participated fully and I loved it. Each of the activities were mindful of inclusivity and involvement, and everyone was needed for the camp to run well. As an able-bodied person, I was invited to gain new insights, which have subsequently informed my understanding of what the church should look like and should be.  

My buddy at my first camp was blind. While my task was to guide her, she in fact guided me to see the world in a unique way. I was her eyes, and she would ask me what I could see – I became mindful of space and details for which were important for her to know so that she can experience camp in a fuller way. In the years that followed, all my cabin buddies have invited me to participate in camp in diverse ways and invited me to participate in ways that has at times challenged my pre-conceived ideas as to what is or is not possible. Rowan Williams, the previous Archbishop of Canterbury states that when we come into the presence of others, we are able to see one another with how God views us – that is “an eternal and unflinching, unalterable love”(Williams, 2016, sec. 844). Because of each person, I was invited to see God at work in my life as well as in theirs, and that has been a gift to me. 

When I was 17, I went to work in the community as a disability support worker. I was still at school then, but I took Saturday shifts. I loved working with the folks who I was caring for, in fact, they became an important part of my life – I would describe them as my family, and so caregiving and community support became my vocation. I briefly stepped away from working in the disability community when the Lord called me to Youth Work at my church, and to enter theological study, but the Elevate National Camp continued to be an important part of my annual rhythm.  

I found myself in 2011 invited to engage once more with the disabled community with work at Laidlaw College. The College identified that there was some much-needed work to do both internally with our own practices, but also, how to help churches realise the work they need to do to become places of belonging for people with disabilities and mental health challenges. This in turn gave me the opportunity to theologically engage with the area of disability, my thesis that emerged in my Master of Theology explores what churches would look like if they were true communities of belonging for people with disabilities. I suggest that in the vision where all belong, then all are equal, and therefore, each person is an honoured member – not necessarily for what they can do, but simply because they are present and participating in their own way.   

When I consider our churches, I believe that there are elements missing, and I think the church needs to sit up and take notice. We are missing people – particularly the disabled community. If there are disabled people in congregations, are they included in real ways, or do they remain on the margins? If they remain on the margins, then we have only attended to the surface level inclusion practices. While some churches do try to find ways to include people with disabilities, it can be seen at times to be acts of charity, and therefore, while there is inclusion, there may not be the depth of belonging. If they do belong, then the significance of how they are present is evident.  

Disability challenges people’s perceptions, first on what it means to be human, secondly, what it means to be whole, and thirdly, what it means to participate fully in the community for which God calls them into. Tom Reynolds, a Canadian Practical Theologian, notes that disability challenges assumptions on what a person can or cannot do – and for changes for churches to occur, then these communities need to adjust how people with disabilities are viewed (Reynolds, 2012). A change of perspective, therefore, would bring an awareness of the place of each person, then each person is recognised as an essential part of the body. In her just released book My body is not a prayer request, Amy Kenny reflects on how people have viewed her disabled body, pushing back against the assumption that because her body is disabled, she must want to be “fixed” by God. For her, this theory could not be further from the truth. I appreciate her honest telling of her experience where she wishes that people could see her as a full image bearer of God, and that they would turn from the narrative that she is worth less because her body works and moves differently to others (Kenny, 2022). To recognise each person as an important piece brings honour to their place and to their calling to their participation to the body of Christ. Kenny goes further to say that assimilation (as in we all need to be the same and look the same, and function the same), should not be how belonging should occur (Kenny, 2022).  

The Apostle Paul uses the body metaphor several times in his letters to different churches. In his letters to the Roman and Corinthian churches (Rom 12:3-8 and 1 Cor 12: 12-31), Paul outlined expectations for the ekklesia (church) – his focus was on unity. He likens the church to be that of a human body – each has its place and particular function and role within the whole. Each part is needed with equal importance. As biblical scholar and disability theologian, Louise Gosbell notes: “…just as the human body requires all its diverse parts to work together for the greater good of the body, so too the body politic needs to work together with all the various members playing their part.” (Gosbell, 2019, p. 281). She goes further to note that “[n]ot only does the metaphor encourage all people of differing abilities and gifts to play their part, but even those considered ‘weak’ and ‘unpresentable’ are considered ‘indispensable’ for the adequate functioning of the Body of Christ.” (Gosbell, 2019, p. 282). By recognising that each person is needed as they are, for who they are, then that is where a welcome shift can occur, where the margins can be removed, and honour and belonging to something bigger becomes a realised part of the Mission of God. Paul’s focus in the latter part of 1 Cor 12 highlights the value of the parts of the body that seem weaker. Without these parts, the body loses function and integrity (Dewey & Miller, 2017). Without these parts, we only can come to know God in a limited way.  

For the body to realise its need for interdependence then the deeper act of belonging is required. Belonging offers an invitation to participate in life with one another in a richer way – the need for each other to flourish is recognised. When each person is recognised as valuable and worthy, then each person is recognised as co-ministers to one another. The Psalmist declares in Psalm 133:1 “How good and pleasant it is when God’s people live together in unity!” Belonging, therefore is profoundly relational – we are called together, all differently able, all differently gifted to participate and grow into the body of Christ. I firmly believe that when we come to that place of knowing, then honour and worth in the God given vocation of each person is found. As John Swinton notes, we come to see who each person is and who God is calling them to be when we encounter one another – this is to be received as a gift, rather than merely looking at what can be achieved (Swinton, 2020).  Each person carries with them distinct value. When we are willing to set aside expectations and at times order in order for people to participate in the body of Christ in particular ways, then I believe that there will be an embodiment of welcome, honour, and therefore an active participation of transformation into the love of Christ, who is the head of the body.  

When we gather together, we should have a sense of expectation for God to work by ministering to and with one another – no matter age, ability or otherwise. I passionately believe that each person will be honoured for who they are, as they are when churches are places of deep belonging and where mutual flourishing will occur because each person becomes the co-participants in the Kingdom of God.  

 

________________

References:  

 Dewey, A. J., & Miller, A. C. (2017). Paul. In S. J. Melcher, M. C. Parsons, & A. Yong (Eds.), The Bible and Disability: A Commentary (pp. 379–425). Baylor University Press. 

Gosbell, L. (2019). A Disability Reading of Paul’s Use of the ‘Body of Christ’ Metaphor in Romans 12:3-8 and 1 Corinthians 12:12-31. In Romans and the Legacy of St Paul. Historical, Theological, & Social Perspectives (pp. 281–327). SCD Press. 

Kenny, A. (2022). My body is not a prayer request: Disability justice in the church. Brazos Press, a division of Baker Publishing Group. 

Reynolds, T. E. (2012). Theology and Disability: Changing the Conversation. Journal of Religion, Disability & Health, 16(1), 33–48. 

Swinton, J. (2020). Disability, Vocation, and Prophetic Witness. Theology Today, 22(2), 186–197. 

Williams, R. (2016). Being Disciples: Essentials of the Christian Life (Kindle). SPCK. 

 

 ______________________

 

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Church Unity in the Love of the Trinity

Written by J. Immanuel Koks

I can’t think of a time when the unity of the church here in Aotearoa and around the world, has been put under this much strain. It seems like a constant hammer pounds on a wedge between those who are sympathetic towards progressive concerns and those who sense the need to hold on to conservative beliefs. Bang, bang, bang. Then the pandemic hit, and our government felt forced to take measures to protect the population. Lockdowns, masks, and vaccine mandates were all part of the Covid-wedge. Once again, Christians found themselves on different sides of this divisive wedge. The government and media kept pounding us with constant messaging about keeping safe, self-isolation, and the possibility of life-threatening illness. I personally think these messages were justified. But, the unfortunate flip side is that they taught us to fear each other: we don’t know if the person next to us has covid or not. So, this time, the great government sledgehammer kept whacking the Covid-wedge into place. Crash, crash, crash. While, mostly, this wedge is not of our making, it has driven us apart.

While disabled people are not to blame for this division because many of us have increased health vulnerabilities, we were part of the justification for the Government’s Covid-19 protection measures. Therefore, we found ourselves near the pointy edge of the Covid-wedge. Speaking for myself, as a person with cerebral palsy, I know I struggle with even basic life functions when I get sick. I am no more likely to get sick than others, but I was worried about how sick Covid could make me if I got it. (The good news is that I completed this article with a mild case of Covid and was not as sick as I could have been.) Therefore, I was quick to get the vaccine, I am careful about wearing masks, and taking other precautions so I could limit my likelihood of getting it. Because our church held vaccine-only services, I felt safer going to church. Nevertheless, I empathise with the disappointment that unvaccinated people feel when they were told to watch the service online or go to “vaccine-status unknown” services I acknowledge, therefore, that the decision by our church kaitiaki (eldership team,) to hold vaccine pass only services was yet another whack on the Covid-wedge.

Whether we agree with their choices or not, there is real hurt and disappointment on the part of those who believe our freedom was at stake with the vaccine mandate. The government-imposed vaccine mandates and vaccine passes brought about really difficult consequences for an individual’s “health decision.” For some, consequences included losing their job, and many others were excluded from everyday aspects of their lives. I think especially of those people who missed out on family milestones, birthdays, weddings, funerals, etc. There is no doubt that the choice not to get the vaccine, was a difficult decision.

Someone close to me is anti-covid-vaccines for health reasons, and what I said about freedom does not even begin to deal with the fear and concern that some people feel about the vaccine itself. Some of those people who have chosen to be vaccinated have been judged, condemned, and ostracised by those who are anti-covid-vaccine. While we may, or may not, agree, people with a variety of positions need our love, care, and respect as they try to navigate a very difficult situation. Whatever one’s experience and beliefs on these issues, we can all agree it has been as hard as it has been divisive, not only in the church, but beyond it as well. So, now more than ever; we need to think about unity in the body of Christ.

But, like many difficult aspects of our Christian walk and Christian thought, church unity is one thing that gets much harder, impossible even, when our priorities are wrong. If the primary focus is on what we must do to achieve unity, we risk going down the uniformity rabbit hole – where we settle into the grove of mixing only with those who are most like ourselves. I am guilty as charged; I find it too easy to gather around friends who think like me and feel defensive when people disagree with me.

When I think of the writings of St Paul, the fight for unity quickly comes to my mind. In fact, I would suggest we know what we know about Paul’s theology of salvation, his understanding of the church, or his understanding of the Holy Spirit’s gifting because he believed the church should be united.

Consider the fractious relationship between the Jews and Gentiles. Jews believed everyone needed to obey God’s law as they were told in their beloved Hebrew Scriptures. But the Gentiles did not come into a relationship with God by obeying the law. Paul’s response to this tension was emphatic. Welcome each other in because neither Jew nor Gentile save themselves by what they do. Rather, every one of us is saved by grace alone, because of Jesus’ faithful life as a first-century Jew, his death on Calvary, and his resurrection in Joseph’s tomb. Unity, I want to suggest, arises when we celebrate together the life, death, and resurrection of Jesus around the table of the Lord. This does not mean that other theology is not important. But our faith needs to be in his faithfulness, not in our ability to faithfully believe the right doctrine. Just as our works do not save us, our grasp of church doctrine does not save us either. Though theology can be a rich, ever-abundant supply of spiritual nourishment. However, knowing the details of doctrine should never take the place of simply trusting that the love and grace expressed on the cross are enough for us. In fact, this is liberating indeed, because God’s grace and love will always escape our fullest grasp.

In this, there are profound implications for the way we minister with those who have cognitive impairments. We know the evangelical insistence that “whoever believes in him (the Son, Jesus) shall not perish but have eternal life” (Jn 3:16.) As a self-confessed theology nerd, I love the nitty-gritty of Christian thought. Yet, I am relieved that I am welcomes in God’s love and grace, despite all my misunderstanding. In fact, I am convinced that the same Jesus who welcomed the little children, will welcome us all in our inability to understand him fully. He welcomes us all even though we cannot live up to the high level of holiness that he desires of us. He also welcomes us in the limitedness of our understanding. After all, we are told in Jn 3:17, “For God did not send his Son into the world to condemn the world, but to save the world through him.” This all leads me to believe that those who trust Jesus with a very simple faith, though they may not understand even the first principles of church doctrine, are just as welcome in God’s loving, gracious embrace, as any theological giant we must wish to name. Perhaps even more so.

As the church grew, it followed the sacrament of baptism. Baptism is a sign that every person, no matter how different they were from each other, is included in Christ. Since, when a person gets baptised they are united with him in his death and resurrection. Indeed, this grounded their unity because baptism was a way of recognising that all shared the same faith in the Trinitarian God who saved them. Paul told the Ephesians to

“be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the unity of the Spirit through the bond of peace. There is one body and one Spirit, just as you were called to one hope when you were called; one Lord, one faith, one baptism; one God and Father of all, who is over all and through all and in all” (Eph 4:2-6.)

Paul knew that unity came through the church coming together in the shared worship of the God who saved them through his work as three persons in the world. Paul knew it was the one Spirit who held the church together. All of us worship the one Son, our Lord, Jesus, who though he is God became human, to live, die, and rise again for us. We’re united as we come to know the one Father of us all who loves us so much, that he sent his Son to save us, and gives us the Spirit to enable our flourishing. In the first four centuries, the early church knew that belief in one God, who was Father, Son, and Spirit, was the only way that they would remain united. But anyone who has done any study of Trinitarian doctrine will know that it’s hard work even to begin to get a handle on what is ultimately a mystery. Therefore, the theologians of the early church struggled to come to, and maintain, a unified understanding of God. These struggles played out in letters sent here-there-and-everywhere in the known world, and in long, large councils with representatives from all around that world. Why? Because they knew the only way to be united was to put our faith in the one God who saves us through his Son.

In theological language, we say that during this period, the church fathers were struggling for the catholicity of the church. (Note, the small c catholicity: I am not talking about the big C Roman Catholic church which emerged because of a massive split between the Eastern church—now known as the Eastern Orthodox Church—and the Western church that began in 1054.[1]) To recognise that we are members of the catholic church is the first step towards unity. Because it is saying, no matter what our differences, if we believe in the same God, Father, Son, and Spirit, and if we believe in the same grace that the triune God invites us to participate in, then we are all one church in Christ.

This is not to minimise the importance of those issues that divide the church into different denominations, but it is to say that those are secondary to the things that bind us together. It means that I can sit with my Roman Catholic aunty and recognise a fellow believer who loves the same Lord that I try to love. It means I can recognise my taxi driver, who is also an Orthodox Priest, as a fellow child of God, even though some of the things that we disagree about are not trivial in the least.

This emphasis on Father, Son, and Spirit is why, when St Paul turns to the gifts of the Spirit in 1 Corinthians 12, he once again grounds it in what will come to be known as Trinitarian language. He writes, “there are different kinds of gifts, but the same Spirit distributes them. There are different kinds of service, but the same Lord. There are different kinds of working, but in all of them and in everyone it is the same God at work” (1 Cor 12:4-6.) After this, Paul describes the different gifts of the Spirit, and how we all need each other, to work in our own gifting, which the Spirit purposefully gives to each unique member. But the point is, though the church is wonderfully diverse, and the Spirit enhances that diversity by giving us each unique gift, we are united because it is the work of the one God.

The Eastern Orthodox theologian John Zizioulas makes a point that brings us full circle. In western churches, birds of a feather flock together. We can go to a church that most aligns with how we think because of the wide array of denominations, and our cars mean we can easily travel some distance to church each week. Traditionally, in the East, the church placed a lot more emphasis on going to your closest church. That means the diversity of the local neighbourhood gets reflected in our church, including having to rub shoulders with those who perspectives are different from our own. So, for Zizioulas, maintaining unity in the local congregation, with all its diversity, is key to maintaining the catholicity of the church.[2]

So, how do we maintain the unity of the church? I know this sounds as simple as it is deep and wide. It is to stop trying to be the glue that binds the church together, by our own strength and knowledge. Rather it is to press into the Spirit and let him be the bond of peace as he gives us all his love, (1 Cor 13). We grow in unity when we come together around the person of Jesus, and focus on how his life, death and resurrection are for us. We can deal with our differences, even the differences of physical, cognitive, emotional, or social ability, when we keep on convincing ourselves that Jesus died for us in our weakness, as much as he died for anybody else in what we might perceive as their weakness. The other glue that binds us together is to know that it has always been the Father’s will to gather us all to himself in love. God the Father created me, you, and our neighbours, for a relationship with him, in Christ, through the Spirit.

So, I want to suggest that we allow the unity formed in Christ, to become a bit more real to us when we put the triune God, at the centre of our worship. When we gather to celebrate what he has done for us and when we go in the power of the Spirit out into the world. Therefore, I can think of no better way to do that than to celebrate the Eucharist (Communion or the Lord’s Supper) as the centre of what binds us together as a church. It is at the table of the Lord that we celebrate Christ, who died for each of us individually, and for the church as a whole. Furthermore, that meal is also a chance to look forward to the wedding feast of the Lord. When the church, the bride of Christ, will be cleansed of all that divides her, and will experience the fullness of communion with our God.

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References:

[1] “Great Schism,” The Oxford dictionary of the Christian Church

[2] John Zizioulas, Being as Communion: Studies in Personhood and the Church Contemporary Greek Theologians, (Crestwood, N.Y.: St. Vladimir’s Seminary Press, 1985), 254-57.

 

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Everybody Welcome: A guide on how to make your church disability

 

 

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We Cannot Walk this Journey Alone

The EncouragerOne of the maybe less-known ministries of Elevate is our Emmanuel Support Group, currently run by Penny and Nigel Shivas. This Auckland couple in some circles may be better known as “the parents of Olivia and Benjamin”. Emmanuel Support seeks to give spiritual, emotional and practical support to parents and families of a child, from infant to adulthood, with any disability. Nigel and Penny have an understanding of the stress and pressure that occurs when you have a child with a disability. When they found out both their children had a physical disability there was a lot of unknown, as is the case for most parents. Penny says, “I was having a lot of questions about the unknown and what the future looked like for us. I couldn’t find anyone to talk to.”

They initially got involved in Emmanuel Support through a connection at church. “A lady from the church we were attending at the time, who was involved with Christian Ministries for the Disabled, told us about a meeting. We went and met Di Willis [one of the founders of Elevate]. She told us about Emmanuel Support.” Penny says “We then attended a parent’s retreat and really bonded with other parents there. There was a degree of nervousness at the start. However, we shared stories and started to appreciate each other. And we have been great friends ever since.” Often the bulk of child care and appointments may be the responsibility of one parent more than the other due to practicality of work commitments. This can mean that each couple’s experience of parenting is different, especially for parents of a child with a disability. Nigel says that, “As fathers of children with disabilities, we don’t always see the full extent of what our wives go through. Due to work, we are not always there for key moments of our child’s development such as their first day at kindy or first day at school. We are not always able to attend all the meetings with doctors, physio’s or occupational therapists. Many of these things can turn out to be watershed moments that wives carry unexpectedly alone at that moment. I was not there for my daughter’s first day at school. And as it turned out, it had a major impact on my wife. She saw all the other ‘normal’ children running around and our daughter not able to keep up or join in. These experiences build up and can then take a toll on relationships unexpectantly.’’

Nigel admits, “When we first got involved in Emmanuel Support, it was with some nervousness on my part. I had a wife that desperately needed more support and friendships from others in similar situations. But as men, we often feel if we can’t fix it ourselves, we are lacking. However, as a husband and parent to children with disabilities, I have learnt we cannot walk this journey alone. And to some extent I found as a husband, I needed to let go of trying to meet all these emotional needs by myself and put it out there that we needed help. Nothing prepares us for a child with a disability and for any relationship under strain we need others in our lives. It’s often others who have walked the same journey that are in the best place to ‘be there’ at the right time. Emmanuel Support was a really big part of that support we both needed at the time and still do.”

There are so many needs for parents of children with disabilities. But Nigel shares that both of them have found that “sometimes, what you really need, is just a listening ear from others who are in your same space. Someone who has lived the same experience being a special needs parent. Someone to pray with and lift our challenges before God. And Emmanuel Support provides that. We don’t have the resources to provide financial or physical help as such. However, we are a group that cares and listens. Just as a by-product of that friendship, people often find out about other agencies that can help. One of our Mums, Dorothy is great for that!”

Emmanuel Support was set up largely to provide opportunities for parents to get together and share freely without fear of judgment. As well as help families come to terms with grief, deal with feelings of isolation and loneliness, and find wholeness in Jesus Christ. “We do that through activities such as retreats and catchups,” says Penny.

“Although it’s been challenging with Covid, we try to run 3 retreats a year. One for parents, one for the women and another one for the men. We hold a children’s Christmas party and Parents’ Christmas dinner. During the lockdowns we have been having weekly Zoom calls.”

Those retreat weekends have been very successful. “At times, parents really need a break from the children they care for, to recharge their strength. At retreats, they can get away without having to do the day-to-day routine. This also allows connecting with a group of parents going through the same scenarios. Parents are able also to share without being judged. Emmanuel Support creates opportunities for networking with other parents that might have been through the same experiences.”

The next retreat is booked for the Easter Weekend, at the usual venue Peacemakers in Parakai (50km north of Auckland). If you are interested in finding out more about Emmanuel Support, please contact Nigel and Penny. All activities are communicated through newsletters, sign up by scanning the QR code below. “With the support of other parents, we become a bigger family, understanding and supporting each other’s journey.”

emmanuelsupport@elevatecdt.org.nz

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Do Not be Ashamed of the Gospel

“For this reason I remind you to fan into flame the gift of God, which is in you through the laying on of my hands. For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline. So do not be ashamed of the testimony about our Lord or of me his prisoner. Rather, join with me in suffering for the gospel, by the power of God. He has saved us and called us to a holy life—not because of anything we have done but because of his own purpose and grace. This grace was given us in Christ Jesus before the beginning of time” 2 Timothy 1:6-9 (NIV)

The Encourager

Paul suffered so much and still he’s able to say ‘No, don’t be afraid to share the Gospel, remember what God has done for us.’ Christ died for us! So, we shouldn’t be ashamed of the gift that God has given us. Here in New Zealand, we don’t suffer for the Gospel as much as some who live in other parts of the world. So, we have less excuse to hide away and be fearful. At the end of the verse, it says God called Paul to be a preacher. God might not call you to be a preacher, but He calls you to be His hands and His feet. He will use you no matter your ability.

Kim Clark

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Why would I be ashamed of exciting news? Think about it. We would not be ashamed to tell people that we’ve achieved something or something exciting has happened. We would be quick to tell people. When I got my job at Elevate, I was so excited! I told all my friends and family. I put a post on Facebook. I even wrote an article about it. But we aren’t always as enthusiastic about the Gospel and our relationship with Christ. We may mention that we’re a Christian or go to church, but do we share about salvation, Christ’s death and resurrection, or the transformation in our lives?

Sharing our testimony with others is powerful. It can be an invitation for people to know Christ and start a relationship with Him. As Paul says in Romans 10:13-15, how can they believe if they have not heard. We need to tell people about the Gospel in order for them to believe. We can’t afford to be afraid of sharing the Gospel and telling our testimonies. Take courage, use your gifts and share the Gospel.

 

 

Manuele Teofilo

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A sound mind is knowing when a storm or problem comes my way, I am ready for it. Not because of me but because my God is for me. The Bible says that if God is for me, or for you, who can be against me. So, people take that and apply that into your life. Whatever situation, problem or storm that comes your way God is for you. So have no fear. Don’t fear the world or what’s happening around you.

Gods’ promises are yes and amen. So, when God says I’ll give you a spirit of power, love and a sound mind, then glorify and say, ‘Yes Lord, please, I receive that’. But to have that you have got to want it. You know it’s like serving God not because you have to but serving God because you want to. If you really want what God’s applying to our life, just open your heart, open your hand and say Lord I receive that.

Prayer: Lord, I thank you for this reminder that your spirit in us gives us courage, love, and a sound mind. You give us the strength and the power to share the Gospel. That’s what you have called us to. Help us to be courageous and enthusiastic about your Word. Help us to tell our friends, family, workmates and those we meet about you. To you be all the glory. In Jesus name, amen.

Lani Va’a

 

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The Value of Inclusive Christian Camping

The Encourager

My journey with inclusive Christian camping began in Australia back in late 2007. I had finished school and wasn’t sure what I wanted to do. Eventually my Mum saw an ad seeking cooks for a local Christian campsite – no experience needed. I enjoyed cooking, so, I applied. A week or so later I went in for an interview and hours later I was offered the job!

Every Autumn and Spring this campsite ran Camp David: a 5-day camp for adults with intellectual disabilities. I hadn’t worked with people with disabilities before, so I felt quite nervous before the first camp… and then I met the campers. By the end of the week, I was in love with all of them and saw what a blessing that camp was for both them and the camp helpers. Camp David became a highlight of my year!

I worked at that campsite for 5 years in various roles. Over that time I learnt the need for people with disabilities to experience the benefits of camp: the connections, the fellowship, and adventure-based activities; activities they would rarely do in everyday life.

In 2011 an opportunity arose that would change my life forever: Christian Venues Association Australia (CVA) and Christian Camping New Zealand (CCNZ), alongside Christian Camping International Canada (CCI/Canada) planned a 2 week study tour of 26 campsites in Canada. Part of the tour included Campfire Circle. Campfire Circle (formally Camp Ooch) provides camps for children and families affected by childhood cancer. Their facilities include all the typical camp activities that you would expect to see, but with some extraordinary additions, including a hospital wing so kids could receive chemotherapy during camp. But the one thing that stood out most to me was seeing this multi-levelled high ropes course with a wheelchair ramp towering over us leading right up to the start of the first level, some 10m above the ground! All the obstacles on that level were accessible to wheelchair users. Since then I have dreamed of seeing something similar in Australia and now New Zealand.

One member of our group invited me to come to New Zealand to visit a large weekend camp for people with disabilities: Elevate National Camp. Did I mention that the trip to Canada was life changing? Well not only did I meet the famous Di Willis, get introduced to the amazing work of Elevate (then CMWDT), celebrate their 30th anniversary and became enamoured by Totara Springs Christian Centre. That weekend was also when I first met my now-husband, Mark – talk about God’s blessings!

In 2013 I moved to New Zealand to work at Totara Springs Christian Centre as an activity instructor and host (which involved hosting Elevate’s Joy Ministries camp and co-hosting National Camp). In 2019 I completed my degree in Occupational Therapy (OT) through Otago Polytechnic (of which I enrolled in largely due to a very lengthy and persuasive discussion about OT with Kirsty Armitage at a previous National Camp). Although I no longer work at a camp, I’ve stayed heavily connected to the ministry through my husband (those who have been to National camp might remember him as ‘Mork’), who continues to work full-time in Christian camping, now in Nelson.

Over the years I’ve seen and heard many stories about the impact that camp has on people. Opportunities to be challenged and try new things increased campers’ self-confidence. The intense nature and intentional community of camp created deep and meaningful relationships. Camp provided people with the opportunity to re-connect with nature, break away from routines and offered rest and rejuvenation. Christian camps are places where people learn about and draw closer to God in a way that very few other types of ministries can provide. However, I’ve also become aware that people with disabilities are missing out on these amazing life-changing opportunities.


As you may know, approximately 24% of New Zealand’s population has a disability (www.stats.govt.nz). However, this is not often reflected in our Christian camps or churches. Although this is not an issue isolated to Christian communities (demonstrated by the findings that children with disabilities are less likely to participate in any social event) (www.odi.govt.nz), it should be seen as a red flag alerting us as Christians to a very real concern: people are missing out on hearing the gospel and fellowship.

In 2020 I enrolled in a masters of Occupational Therapy and proceeded onto my thesis. Delving into the literature, reading about the importance of healthy risk-taking and adventure, learning of the benefits of including young people with disabilities within mainstream social activities, and God’s desire for the church to be one body, has strengthened my conviction on the value of inclusive Christian camping. Offering the option of attending a camp including peers with and without disabilities not only provides the above benefits of camp, but also helps facilitate genuine relationships and develops a sense of normalcy for young people in interacting and making friends with people who are not like themselves. This helps decrease the ‘us and them’ divide that historical segregation has contributed to. This in turn will mean these young people, when adults, will have greater influence upon our world, transforming Christian communities until inclusion is the norm which, hopefully, will then transform churches and Christian organisations into places of belonging for all God’s children, regardless of abilities.

Throughout this journey, I can see God’s grace and guidance, leading me to where I am now. I am so thankful and privileged to now be working with Elevate where my life experiences and academic learning can be used to support and advance God’s kingdom on earth. I am excited to be a part of the new Nelson family camp, which we are opening up to all families affected by disabilities, be that a child, sibling, spouse or parent. I am also excited to potentially work with Christian campsites across the country to help encourage, train and support them to become more inclusive. I pray for more opportunities to run even more camps – maybe a week long summer family camp? Or a youth/young adults adventure camp? – Of course, none of this can happen without God’s grace and provision and volunteers and it will be certainly taking one step at a time, but I know that God has given me this passion for a reason and I’m trusting in Him to show me the way: “Your word is a lamp for my feet, a light on my path.” Psalm 119:105.

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Siobhán Jansen works for Elevate as the Training & Seminar Coordinator and the Family Camp Coordinator. If you would like more information on our camps or you/your church would like more information on becoming more inclusive, please visit www.elevate.org.nz. You can read Siobhán’s blog on inclusive Christian camping at www.siobhanjansen.wixsite. com/mysite.

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Our Family Story – Three Generations of Duchenne Muscular Dystrophy

“We will tell the next generation the praiseworthy deeds of the Lord, His power and the wonders He has done.” Psalm 78:4

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

“This sickness is not unto death but for the glory of God.” John 11:4

Left to Right Standing – Sean and Cherie O’Sullivan, Heather, Brian, Jordan Linton, Karen Linton
Left to Right Seated – Ben and Joel O’Sullivan, Judah Linton

My journey with disability began in 1949 when I was three years old. Our family lived on a farm in the Waikato, where my dad was a dairy farmer. I was barely old enough to know what the word meant, but disability was to be part of my life from the day my brother was born. Peter’s birth was a difficult one for my mother, and she knew something wasn’t quite right with her third baby. He didn’t suck properly so took ages to feed and had poor muscle tone. He made slow progress physically and didn’t learn to walk until he was two years old. When he started school at five a local kindergarten teacher observed that he seemed much slower in his learning than the other children. As he grew older we noticed he gradually grew weaker. Peter was a happy child, so we called him Smiley Pete. My parents loved God and lived out their faith in their daily lives. While not knowing what his problem was, Mum and Dad believed God could heal him. When he was seven an aunty friend took him to Australia to be prayed for by the healing evangelist Oral Roberts. While he did have some improvements, sadly he wasn’t healed; rather he grew weaker as the years went by. He eventually ended up in a manual wheelchair and lived at home with my parents. After 2 years at school he took correspondence lessons at home, which I loved to help him with. The diagnosis of Duchenne Muscular Dystrophy (DMD) wasn’t made until Peter was about nine. Sadly, he died just after his 16th birthday, in 1965, after increasing weakness and having difficulty with breathing.

While we grieved for Peter, each in our own way, our family went on with life in the years ahead. There was no indication that this disability would affect any others in our family. A few months after Peter died I became friends with Brian Vincent from the church we attended, Pukekohe Baptist. We married in 1968.

So, the years went by – we little dreamed that our lives were about to change dramatically. By the early 1970’s Brian and I had become the proud parents of three children, Cherie, Karen and David. I was finding fulfilment as a young wife and mother and God gave me many scriptures to encourage me.

However, as David grew, we noticed he couldn’t run or walk very fast or climb trees like his sisters. He was starting to remind me of Peter. After a series of tests and X-rays when David was four, he was diagnosed as having Duchenne Muscular Dystrophy. Yes, it was the same disability as my brother! This disease causes the muscles of the body to slowly waste away until even the muscles of the heart and lungs are affected. It is a genetic disorder, affecting only boys, and caused by the lack of a protein called dystrophin in the muscles. It is characterized by progressive muscle degeneration and weakness. Being genetic meant I was probably a carrier, with the potential to pass this on to my children; a 25% chance of any sons to have it, or 25% chance of my daughters to be carriers of it. This was confirmed after I had a blood test and David a muscle biopsy. My mother must have been a carrier too, as both my brother and I were affected.

At back – Heather (me), Bruce (Dad).
At front – Peter, Steve, Flo (Mum), Kath

Up until then I didn’t know I was a carrier. We now knew Cherie and Karen could be carriers of the defective gene as well, potentially passing it on to any children they might have, but then only nine and seven, it was too early to tell. They became wonderful caring sisters to their brother, even though he needed extra attention as he grew older. He was a happy boy and we often said, “Keep smiling David, makes us wonder what you’re up to!”

While this was devastating news at the beginning, God encouraged me with the scripture, “This sickness is not unto death, but for the glory of God.” John 11:4. We believed God would heal him, and we took him to healing meetings for a while. But we reached a point where we relinquished his healing into God’s hands. As the years went by, he not only inspired us, but everyone he met. “It’s all right Mum,” he’d often say. “I know God can heal me – I just don’t know how or when.” He grew to be a young man with a strong faith, who seemed to take his increasing weakness in his stride, even when needing a wheelchair and unable to do much for himself. God encouraged me with the scripture in Exodus 2:9 (KJV) “Take this child away and nurse him for me, and I will give you your wages.” And He has done just that. When David got his first electric wheelchair, he loved whizzing around Hebron School, to the envy of his classmates.

When they tried to stand on the back for a ride, it annoyed him, so he did a quick turn in the chair and flicked them off the back! David eventually attended Mt Roskill Grammar where there was a disabled unit. He did well there, and continued his education by studying architectural drafting at Unitech. This enabled him to design our new wheelchair accessible house with a harbour view in Te Atatu, which we moved into in 1994.

“My grace is sufficient for you, for my strength is made perfect in your weakness.” 2 Corinthians 12:9

When Cherie, and then Karen, got married they faced uncertainty regarding starting a family because of the hereditary factor. Cherie and Sean wanted to know if Cherie was a carrier, so when they married in 1989 she had a DNA test done. It was determined that she was a carrier, so they knew the risks involved. Cherie said at the time, “There is a 75% chance that our child will not have DMD, so this is a risk we decided to take.”

In 1995 Sean and Cherie’s first son Joel was born. A month later blood tests verified that he had DMD. We were devastated – this was not what we were expecting to hear. This disability was not going away, it was now affecting a 3rd generation. Joel, our first grandson, won his way into our hearts as he grew. Just a year later, Ben was born and he too was given the same diagnosis. This too was devastating news: it was too big for us, but not for our God, whom we believed was still in charge. We decided we’d trust Him with our future, as we watched Joel and Ben grow up; they were a double blessing. When asked what he thought about having two nephews with DMD, David was quite matter of fact. “They could find a cure for MD before they get too old and that would make a difference.”

Karen married Ivan in 1995, and soon she was pregnant. She and Ivan decided not to have tests to determine whether Karen was a carrier or not. They didn’t want the knowledge of a disability to potentially affect the way people treated their children – for as long as possible. And they knew God would be faithful whatever the outcome. Jordan was born in 1997 but as he grew showed no signs of muscle weakness, rather the opposite – he was full of energy and bounced all over the place. Judah was born two years later, and he too wasn’t tested. However, as he grew older Karen began to notice the tell-tale signs of DMD: muscle weakness, not able to run properly, or pedal his bike very well. So at nearly seven years old, (in spite of the doctors thinking he was a bit too average to have DMD) Judah was diagnosed with the same disability as his cousins and uncle! We were all in this together. And three out of four of our grandsons have the same disability. At the time it was mind-boggling to realize this and the implications for our family. But David himself became a role model for his nephews and was so proud of them. They loved having rides on the back of his wheelchair but he wasn’t quite strong enough to sit them on his lap!

Caring for David took its toll on Brian and I even though we had wonderful caregivers to help us. We were grateful for the support of the folk from Elevate, like our wonderful friends, Hugh and Di, and the many Labour Weekend Camps we attended. Eden AOG was our church then, where Geoff and Joanne Wiklund pastored us. They could see the tremendous stress we were under so Geoff suggested we take a ‘sabbatical’ break from David’s care. So in 2000, when he was 25, David moved into a supportive flatting situation in Mt Albert. This was not an easy decision: we had to let our son go to be cared for by others. However, some of his friends from Elevate lived here, including another young man with DMD, so after six months he was happy to continue. Two years passed and it became apparent that he needed more intensive care than the flat could give him, so he returned home. His weakness increased, affecting his breathing and eating. Finally in September 2002, aged 28, David passed away into the presence of the Lord he loved and served. It was his Nana’s 88th birthday (she outlived her grandson by five years).

Left to Right – Karen, Heather, Brian, David (seated), Cherie.

Our grandsons now became our focus as we supported them, enjoying regular family times like Christmas and birthdays together. We proudly watched as their parents cared for their sons and gave them great experiences. Karen even took Jordan and Judah to Rarotonga in 2008 for a year’s teaching position, while the O’Sullivans went to Bathhurst Motor Sports in 2007. The four ‘little’ boys grew to be handsome young adults, and have enjoyed getting together as cousins! Each one has unique gifts and talents in art, music, memory and computer technology, while they all love motor sports! Cherie’s family now live in Tauranga, as we do, while Karen and Judah live in Hikurangi near Whangarei, and Jordan lives in Palmerston North.

In 2018 Ben developed a serious heart condition which needed treatment. Miraculously he and the family were still able to take a ‘bucket list’ trip to the United States, with sightseeing, motor sports and a Church Worship School on the agenda. However, Ben’s heart condition didn’t improve and a year later in March 2019, he passed away. He’s now no longer confined to his wheelchair. Joel and his parents miss him very much.

It’s only by God’s grace He has enabled our family to live this big life. From my parents to our grandchildren, we as families have found God’s faithfulness and grace truly has been sufficient for all our needs. For His grace is made perfect in weakness, including the weakness of muscular dystrophy. When we are weak, He makes us strong. I wrote “It’s Allright Mum!” as a labour of love, but also as therapy as I worked through some of the issues that disability in the family brings. I wanted to encourage families who were living with a disability. I wanted say “It’s all right, Mums, and Dads, God’s got this! He’s in control and He’s the same yesterday, today and forever. He’s the God of compassion and He can comfort you like He has comforted us.”

“The Father of compassion and the God of all comfort, comforts us with in all our troubles, so we can comfort those in any trouble with the comfort we ourselves have received from God.” 2 Corinthians 1:3-4

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Heather Vincent lives in Tauranga with her husband, Brian. They have both been involved in Elevate since attending National Camp in 1985. Her book, It’s All Right Mum!, was published by Daystar in 2004.

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Image of the cover of the encourager magazine issue 173 March 2022

 

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