How Pushing A Wheelchair Ruined My Theology and Gave Me Faith

imagesThe wheels seemed to stick to the polished floor as I pushed my daughters wheelchair down the quiet corridor towards her classroom for the first time. As I turned the corner I was confronted by a line of special needs kids, some quiet, some boisterous and some on the other side of a glass wall waiting for class time.

I tried to be adaptive and accommodative but inside I was spinning out of control. I wanted to turn around and wheel my daughter straight out again as though these children had nothing to do with our world. I felt shameful and equally confronted, I was bereft of any good sense and just wanted to go back to our ‘normal’ life – whatever that was. The strange thing was, our normal life included my daughter who has severe cerebral palsy. I had deluded myself into thinking we were different and were accidentally categorised into the wrong group.

In the past I’d pray my way through problems using repetitious power phrases that were common language to the evangelical church like, “by his stripes I am healed.” On reflection I think it was more habitual than meaningful. Pushing my daughter into the foreign world of a special school was like waking up from a long dream only to realize I was sleeping on the edge of a cliff face. I wondered how I was ever lured into the idea that God was a cosmic vending machine that I could access whenever I needed something. Life was now staring me in the face saying, “Hey fella! Welcome to reality.”

With my rogue thoughts promising to unleash buckets of tears, I came away from that school wondering why there was such a differential between the pop theology of the modern church and the real world. Why did I feel further away from God in my lament, wasn’t he meant to be closer in times of trouble? Was I the only one feeling like I was in the twilight zone when the preacher over promised on God’s behalf? The truth was the disparity wasn’t helpful; it made our journey more gruelling than it needed to be and pushed me away from church at a time when I really needed community.

If you had to sell the modern churches promises on a supermarket shelf it would be a salesman’s dream, “come and get it, eternal life, healthy body, hear God’s will and enjoy your wealth! Just say the sinners prayer – come and get it!” On the other hand, if you had to sell the real world as a product, it would be a salesman’s nightmare, “come and get it – disease, tough times, family breakdown and poverty – the most effective way to build character…” No wonder the evangelical church prefers to talk positive more often than not. But for most people, it is only half the story.

My wife and I have of course lived with my daughter’s disability since her birth, it is something that we have grown with – in a crude way it has become our normal. Sure… we lament and shed many tears, but my daughter Sunshine does exactly what her name suggests, she emanates light. The simplicity of her joy is actually quite profound.

Her disability doesn’t seem strange to us, the dribble is perfectly fine, her unique vocalisations are perfectly understandable and her twenty-four hour care is just part of the deal.

The change began slowly for me. My theology up until Sunshine was born was theoretical and I used it like a wielding sword to answer any inconsistencies as though unruly thoughts needed to be amputated. The blessing philosophy I was introduced to when younger seemed entirely possible. With a naive gullibility, I believed I deserved good things to happen, in fact I expected it. I believed that despite living in the top ten percentile of income earners in the world already, I deserved more. Yes, more stuff, better cars, better health, better jobs, I even had the belief that I had angels assigned to me to ensure sure my protection from whatever the big bad world presented.

UnknownBut then I pushed Sunshine’s wheelchair down that polished waxy hallway and was confronted with the real world. That world said, “Whatever you thought you believed means ‘Jack shit’ to any of these kids.” Behind each one of these children was a family, who if anything like us, was continually grappling with the ‘why or how’ question only to discover there were no answers and pop theology seriously under delivered. Not long after, I began accepting my questions may never get answered. My wielding sword of theology was useless and somewhat blunt. As I stood in front of all these precious children the message of the evangelicals became muted, insufficient, shallow, self-serving and more disturbingly – not much like Jesus.

I liked God before my daughter was born and then I was confronted with such an overwhelming sense of injustice, I couldn’t see how God could honestly be ok with his plan A or B. Injustice thumped through my veins like an impatient inmate furiously banging on the prison bars as I watch the endless surgeries, the constant vomiting, the terrible prognosis, the brokenness, the pain, the heart failures, the deafness and the silent nights where we wondered if this would be the last time she would breathe. Theology wasn’t human enough for me to confront the relational disparity, but maybe faith was.

Whenever I heard pop theology and throwaway lines about God’s abundance or extravagant intimacy, I found it hard to not see it as anything but comical. The truth was I wanted to go back to my old life; I wanted the blessing thing to be real. I wanted to believe that God was close to me. I liked the idea that around every corner was the possibility of prosperity. Our family is ‘exhibit A’ of how pop theology doesn’t work, no matter what lever we pull our situation remains the same. I am sobered, I will never be the same – I have seen the other side. Most pastors are very quiet on these real and present issues and would prefer to have the Sunday congregants walk out on cloud nine.

Some of the children at the end of that sticky corridor may never comprehend the complex idea of God and eternity – I’m not sure I even understand it. They may not have the ability to say the magic ‘profession of faith’ that so many evangelicals insist is the first step to Jesus. They may never understand the Trinity or ask for an infilling of the Holy Spirit. They may never comprehend the cross and its complex implications. For most of these children theology means absolutely nothing. If all those things were that important, then it seems very unfair that many of these precious kids would struggle to experience all God had for them. After all, theology is the systematic and rational study of God. If understanding theology actually had benefit, then was God disadvantaging vulnerable children by using knowledge as a gatekeeper to a stronger relationship? That didn’t seem right to me so instead I found myself asking how important was theology anyway?

After that first day at the special school my pop theology was ruined. I couldn’t trust what the evangelicals said and still comfortably reconcile the disparity. All I had left was my faith and even that was in tatters. As I grew more comfortable holding theology loosely, my heart was able to wander freely down paths I never knew existed. Now God could be as big as he wanted to be. I felt less compelled to package God in a nice neat box that could be delivered within a forty minute message on Sunday. This newfound freedom meant that faith was scary because it was unquantifiable. It was like seeing the open outback sky for the first time and noticing how many stars there are. In contrast, theology was one plus one equals two… or three depending on your interpretation or preference.

My daughter Sunshine is a grand reflection of love. Through the lens of faith her twisted body doesn’t yell, “contradiction,” as much as it says, “mystery.”

Theology promises to explain God and all the inconsistencies that confront us. The better I got at explaining God; the less I was drawn to practice faith. To me theology is the Christian version of science. Both science and theology rely on the mind to interpret and both need intellectual speculation to explore a hypothesis. When my experience became raw and grungy, I didn’t give a crap about black or white, it was simply about survival and faith seemed to have the bandwidth to accommodate my broad emotion.

Yes, I wish for something different, everyday I wonder what it would be like to hear Sunshine’s thoughts and fears – I wonder if she has a view on God. Even though my daughter Sunshine may not be able to dissect an ancient book and offer a perspective, she may have given me the most significant gift I could ever receive – realness.

We need people like my daughter to tame the insensitive and silence the proud. Every time I push that wheelchair I am reminded how faith has the potential to sustain the broken and offer hope. Faith makes a mockery of the intellect pointing out its limitations and assumptions. I find faith less judgmental than theology.

Maybe my view will change in the future, but for now I get no satisfaction from joining the theological dots. I feel closer to Mother Teresa than the pop theology of a wealthy preacher. It is sobering to look in the eye of a special needs child, or the dying in the case of Mother Teresa, because whatever view you conclude it will quickly become superficial.

Theology doesn’t elicit love from me but faith does. Faith is the common currency of the poor; theology is the more often than not, the currency of the privileged.

20 thoughts on “How Pushing A Wheelchair Ruined My Theology and Gave Me Faith

  1. Thanks for your honest reflections Jay. I wonder if its theology or just ‘bad pop’ theology that you are rightly rejecting. What about a theology that accepts the mystery of God – that there is a God who loves your family and the kids at the school – a God who knows suffering – a God who grieves over pain and injustice – a God who will one day let justice roll on like a river and where there will be no more death or mourning or crying or pain? I hope this doesn’t come across as more glib or superficial ‘theology’ but for me its that sort of theology that allows me to trust Jesus when everything else is stripped away and I’ve still got more questions than answers. Thanks again Jay.

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    • Hey Rod, thanks for your comment. Before I posted this I ran it past a good friend of mine who is a professional theologian. He said the mere fact that I am proposing a rebalance to make faith more important than theology when it comes to a relationship with God, is in fact, a theological perspective in of itself – I can’t win!

      Theology outworks itself by how you understand it. It isn’t static and absolute otherwise you could read it and interpretations would stay the same and be understood universally amongst Christians – but it isn’t. We are in a time where there is actually more division within the Christian movement than ever before because people interpret the bible in a certain way. How do we know who is right?

      From my perspective it is about the end user – me as a parent in conflict. Because I am not a theologian I ultimately rely on others to tell me what the complex issues mean, and there lays the problem. I do have an issue with people raising theology as a high road to God – it can be fraught with ethical problems, one being, if theology is that important and it was Gods way of speaking to us, then what does that mean for my daughter? In all good conscience I can’t accept that.

      I deliberately used the word ‘pop theology’ because I have good friends who are theologians and they use theology to help bring peace to the conversation but they are far and few.

      I don’t know where to from here but for me I am questioning the premise that someone or a group of people can have the rights on ultimate truth. If theology was taught in a way that encouraged people to think for themselves, I’d be a little less concerned, but in many cases a Sunday service is a download on one persons perspective in a somewhat oracle format.

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      • Yes, I think it is important to think theologically with a large portion of humility, it really can’t be done faithfully I feel without an openness; going on the journey of theology is a journey of discovery, a journey where we strive for the truth and if we are open, are transformed and drawn into greater intimacy with God as the Holy Spirit allows us to connect in that way. In some ways you could say, the more honest we are about our reflections on God, the more theological they are because we are more faithfully reflecting on our experiences in light of tradition and biblical revelation.

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  2. Jay, for me its been a theology that provides hope and comfort in the pain and the confusion. I think anyone who is thinking about God is a ‘theologian’ – and yes, you too are providing a theological perspective!
    Sunshine doesn’t need to read theology, she will see and feel it reflected in your love and care for her. She will experience something of God’s enormous love and care for her through you – and hopefully many others. ‘God bless you and keep you . . . God make his face shine upon you and be gracious to you . . . God turn his face toward you and give you peace.’
    Thanks again.

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  3. Great post Jay. I think what you aptly call pop theology is a shallow one that reflects our western privilege, sense of entitlement borne from individualism. So different to the culture that hosted the gospel. Much food for thought. Thanks for your honesty and theological rawness.

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  4. Jay my friend, as usual a brutally and refreshingly honest look at faith. I love you and Helena and the girls and you are all a gift, a very precious gift. Not only because of who you are but because of the journey you are taking us all on. A journey we desperately all need. Thank you my dear friend. Lisa.

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  5. Thanks again Jay.

    Stress is the gap between what we expect to happen and what is actually happening. Dr. Gary Smalley 2004.

    This is otherwise known as disillusionment. It’s a painful process, but knocking the rough and unhelpful edges off our internal construct of the world makes it a better fit and makes us better fit to live productive an useful lives.

    I agree that faith, specifically in a loving and just God, needs to be kept to the forefront because it helps us to shape our future with hope and optimism. However even Christ said ‘in this world you shall have tribulation’.
    So I keep my head up by trusting and hoping in God and by daily Bible reading, asking that the Holy Spirit lead me into all truth, knowing that I shall never fully understand God. In that sense Theology is an oxymoron: in dissecting God he just gets visibly smaller.

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    • Hi Gordon. Nice to hear from you! Every time I think of the outback I have this picture of you knee deep in dust furiously translating scripture into language for our first Australians! Are you still translating?
      I think your take in your post is suitably humble and the best place to be. “In dissecting God he just gets visibly smaller.” Couldn’t have said it better myself. Thanks Gordon

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  6. As a parent of a child at sunshine’s school I am intrigued by your reflections. My initial response is to be offended. Maybe that was my child you saw that made you feel so overwhelmed. Why would you stand in judgement and describe their school as a foreign world ? Why does it cause you so much revulsion ?

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    • Hi. Firstly thank you so much for taking the time to write. I read over your response several times partly because I was horrified that I may have inadvertently brought someone to the conclusion you have come to, but also the last thing I would ever be is repulsed by any person or child who has special needs. I have written endless blogs trying to help those who don’t have special needs in their life to understand the challenge. But in this case it doesn’t matter, what matters is how you feel about what I have said. So let me say this, I am terribly sorry if I have written this in a way that has caused you offence. I am on your side, I care deeply about my child and others which is why I spend so much time and effort writing about the issues.

      What I was describing was the status of my denial. Like every parent we only ever imagined healthy children would be part of our picture. I was describing my feelings at the time – raw, uneducated, perhaps naive. Now of course I see things very differently. I see the beauty, the depth and the ongoing heartache – not for broken dreams as much as wanting your child to be happy and not in pain etc. As you would know we grow into disability even though it is thrust on us.

      The other thing about this blog is it was directed towards the Christian community of which there are ethical and theological issues where it makes it difficult for people like you and me to be a part of a spiritual journey if we choose to be – maybe that was an error of judgement on my part in that when I write, I write to everyone.

      I would be happy to catch up at school or on the phone to talk further. But please know, my reflection was about my inner turmoil, even though Sunshine had CP, I didn’t want her to have it and looking at the other children forced me to come to terms that we were indeed on this journey no matter how much denial I was in. It was never a reflection on how I felt about your child or any other.

      If you want to read some other blogs to get a more rounded picture of how I really feel about the community we are in please read these:
      https://jaymcneill.com/2014/11/26/the-price-of-affection/
      https://jaymcneill.com/2013/07/31/special-dads/
      https://jaymcneill.com/2014/04/25/doing-life-with-a-lump-in-your-throat/

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  7. Pingback: How Pushing A Wheelchair Ruined My Theology and Gave Me Faith | Sunday Everyday

  8. Jay, I certainly appreciate the way you reveal your struggle. I believe your theology is accurate. God is not essentially about comfortable circumstances. God will always be interested in interacting with us, in spite of any and every circumstance that anyone lives with. Your circumstances include caring for Sunny, and Jaz.
    I wouldn’t be surprised at all to find out that Sunny has a very good comprehension of God. She has been the recipient of the care of the Spirit of God through you and Helena since her birth. You my friend have been the personification of the Spirit of God to her every day of her life. She knows the heart of God through you.
    Regarding theology; All those other voices you hear about entitlement and comfort and wealth etc. that come from people who in honesty have never experienced any hardship worse than a traffic jam, or receiving the wrong order at Starbucks, those voices do not necessarily know reliance on God.
    To know that God does not promise absolute comfort is important because, God is still God and what He desires most from any of us is that we continue to discover, how we can express His intentions every day, despite our circumstances.
    No doubt, your life is a series of challenges but, you have managed to express Gods intentions despite the circumstances, so yes, it can be done, and I am sure that God is saying “Well Done Jay” but you might not be hearing it.
    Sunny seems to be able to express joy. Imagine that. In spite of her circumstances she perceives joy . You are the embodiment of God to her. You provide for her, you sustain her, you remind her that she is loved despite her short comings. She rejoices in that.
    I am glad to hear that your theology has been challenged. Life-long disability will do that.
    JOEL

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    • Well said Joel.
      My simplistic understanding of God is that He is LOVE.
      We as the parents of special needs children are indeed the embodiment of God to them as they feel our LOVE. We envelope them in love. Sometimes that seems all that we can do.
      However our children are also the embodiment of God. They express pure LOVE. They dont express evil thoughts and possibly never will. Only love.
      Sunny is LOVE. She is loved by you and Helena and all those who care for her, work with her, meet her, know her. And in return she expresses great LOVE.
      That to me is GOD.

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  9. Wow, this is am awesome piece joel. What you describe is very similar to what happened to my faith when our daughter was diagnosed with autism. It broke my evangelical box regarding who and what God is, and opened up a new path that has been a whole lot less certain, but a whole lot more healing and spacious. I think the evangelicalism I grew up and embraced till a few years ago has been highly influenced by modernity and it’s notions of being able to explain everything, and tries to make christian faith like an industrialised machine, where if you add the right cogs the whole thing will function automatically. Post-modernity acknowledges that life cannot function on automation and returns mystery to the journey.

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  10. Hi Jay. I’m a parent of a special needs child. (Downs). We knew her condition before she was born. I said to a friend and Pastor “What if God doesn’t doesn’t heal her, how do I process that?”
    His reply was “What about, even if?” I have to say I have never heard a more grounding statement in all my life. I had to learn to walk in the “even if”. I identify with much of what you say here, it is my experience also. I think we live in a form of denial. But I have learned also, not theology, but I have learned the Father heart of God. A father that chooses to love, without reservation, the imperfect, the hard to deal with, the child that we would give our all for just to see them whole, (as indeed he did) living through the daily struggles waiting for that moment of joyous connection, and sometimes those moments of joy/despair are split seconds apart. I have added that learning to my theology.
    While I read this post, I thought of Jesus sending the disciples out onto Galilee. He knew full well that a storm was coming, he also knew how he would reveal himself in the midst of that storm. He showed his disciples that they could walk through it, because he was also there. The storm died down at his command. The storm within can also be quieted. We have only to ask, “Can I walk with you through this? Because I’m scared Jesus.”
    Stay strong on your journey brother. Enjoy the Sunshine, in the midst of the storm.

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    • Hi Leo,
      What an insightful response. Thank you… as always I learn so much from others. I will stay strong and I honestly feel like I am getting clarity in this foggy night. “Even if!”

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