Disability and Church – Haydon Spenceley

This blog is also forming the basis of a piece I’ve been asked to write for this weekend’s event at the Vatican, Living Fully 2016. This looks like being a fantastic event. I’m sad not to be attending, but very happy to be able to offer this contribution to the discussion and debate.

Things You Learn Lying On the Bathroom Floor

Recently, I was enormously privileged to be asked to both preach and act as a co-best man for two dear friends of mine, Matt and Ruth. This happy event took place towards the end of a period of seemingly frenzied activity in the life of the Churches in which I am Assistant Curate, The Emmanuel Group in Northampton. I was nervous before I spoke. There’s so much that one wants to say in a wedding address, particularly for close friends. Fortunately, I managed to strike the balance between providing a warm up for the best man’s speech later that evening and speaking words of love, truth and blessing to Matt and Ruth from God as they began their married life together.

Prior to that day, the week had contained several other events which had been noteworthy. A couple of apparently serious incidents involving people in the life of our Church community provided both opportunities for exercising ministry and opportunities to take on more worry and tension than I perhaps should have done. In the same week, I found myself praying for the new Mayor of Northampton, Cllr Christopher Malpas, as he began his term of office by inviting me to be his chaplain. I can tell you that these events are not normal in the course of my life and work. What is normal? And why might I begin a piece about disability, fear and leadership by talking about things which to other ministers might seem fairly normal, even mundane?

Let’s return to Saturday night. It’s around 10pm, the wedding is starting to wind down and I’m laughing at another joke from a friend I see far from often enough. And then it happens. I feel a tightness around my core, the muscle group that stretches around the middle of my body. I know what’s coming. Fortunately, I manage to attract my wife’s attention before I am unable to speak, and she propels me along to the bathroom, which is mercifully vacant. As the door closes, wave upon wave of spasm hits me and I am doubled over in agony. I can’t breathe. I can’t speak, except in groans and to say the most important word I can think of at that moment: ‘sorry’. I’m sorry to my wife that she has to see this, to deal with it. I’m sorry that I nearly had an ‘episode’ in a very public place. I’m sorry that my body is out of control. I’m sorry. I’m sorry. I’m sorry.

In short order, I’m lying flat on the bathroom floor and, in the cold light of day a few days later, I’m not ashamed to say that I am whimpering. I am scared. What if it doesn’t stop? It did last time, a year and a half ago, when an over-busy Christmas period ended with me on my parent’s lounge floor putting a dampener on the beginning of our Christmas celebrations. It did immediately after I arrived home from playing a show with my band (in a former life!) in Trafalgar Square to (I’m told) 10,000 people, but what if it doesn’t this time?

Fortunately, it did pass. I was able to re-enter the fray of the wedding before too long and have spent most of this last week recovering my equilibrium. But there were a few moments lying there on that bathroom floor, and I say this advisedly and without seeking to overly dramatise the event, where my life, and my immediate future, flashed before my eyes.

During those moments, convinced that my body was letting me down, I decided that there was no way I would be able to undertake in future the functions of the priestly role. What use would I be to people if, when under a modicum of stress, my body decides to stop allowing me to work? From there I find myself in a cycle of reflection. What is the priesthood about? Does it require bodies and minds to be of a suitable consistent standard to be acceptable to God and deemed as priestly? Leviticus 21, particularly vv16-c20 has the potential in thought processes such as these to be a source of terror and a weapon of tyranny.

The Lord said to Moses, “Say to Aaron: ‘For the generations to come none of your descendants who has a defect may come near to offer the food of his God. No man who has any defect may come near: no man who is blind or lame, disfigured or deformed; no man with a crippled foot or hand, or who is a hunchback or a dwarf, or who has any eye defect, or who has festering or running sores or damaged testicles.

This passage, taken in context, is about ritual purity or impurity. However, for me, at times when my sense of worth has been challenged, it has the power to rear its head as a judge and jury: I am not enough. I couldn’t be. My body does not measure up and because my body doesn’t, neither does the rest of me. You might read this and feel like my exegesis is off (it probably is) and that I’m being overly-dramatic (I very well may be) but feelings and deeply-internalised thoughts can be heavily consequential and hard to shift or shake off.

A combination of the glorious fulfilment of the law by Jesus and the belated flourishing of institutional common sense has made it possible for a slightly more representative selection of the Body of Christ to be considered suitable for ordination and leadership in his Church. I found it instructive, however, that it was in the moment and aftermath of reduced functionality that my sense of priestly identity, something which I think I know can only be imbued by God, was challenged, by me, in my own head. Have I, have we, in rightly emphasising the importance of honouring God in calling, training, equipping and sending leaders, misplaced our sense of balance? I would argue I certainly have, perhaps you have too.

We all know that the weaker (in whichever sense we are denoting weakness, certainly impairment does not equate to weakness in all cases) parts of the body are to be given the greatest honour. We know, too, that the greatest, and arguably most powerful acts of Jesus came in his weakest moments. In submitting to suffering, in emptying himself of all but instead of imposing his will and his way on all people, so that those very same people could have eternal life, life to the full, access to the grace and peace of God. Our God was not in human terms physically, mentally or emotionally, at his strongest when he was at his most efficacious.

And yet, as I writhed on the floor in agony, it was my ability to prove myself effective in the future, immediate and long term, as a minister that I most worried about. To put it bluntly, if this situation didn’t improve, or change, I wouldn’t be able to do my job. Rightly or wrongly, probably wrongly, this was my instinctive reaction, one that I had to fight against in the moments of uncertainty that followed for me in the proceeding days. I don’t believe that anything or anyone but God can give a person what is necessary for them to be a priest. Neither could anyone but God truly revoke that calling and identifying.

The diocese in which I live and minister, Peterborough Diocese in the Church of England, has been fantastic for me as I explored a calling to ministry, had that calling affirmed, trained and now am completing the second year of my curacy. At most stages along the way, my impairment has been a ‘live’ issue. Both the diocese and I have had to work together on finding approaches to life and ministry that are appropriate and effective for me. I want to say here that I greatly appreciate the care, support and incisive challenges that have been given to me by my Bishops, my Archdeacon and other senior staff in the Diocese and wish to honour that. I had, and have, at least as much to learn about the ways in which I can live as a priest as ‘the Diocese’ in this regard. Similarly, my Training Incumbent, Margaret Johnson, truly has enabled me to flourish during the two years I have worked with her. I am incredibly grateful for that. These might seem like unnecessary things to say in a piece like this, but I think they’re important. Many people and institutions have collaborated to ensure that I have become able to live and work out the calling that God gave me. I know other people with impairments and disabilities have had good experiences in this regard, whilst for others similar processes have been hugely painful. There is, though, hope.

Our Churches benefit hugely from being ministered to by people who run the full gamut of the wondrous glory of God’s creation. Some of these ministers will be all-action, placed in physically and emotionally demanding situations and circumstances. Some will be able to offer less physically. Still others will offer a level of academic rigour in their dealings with Scripture and theology that will be far and above that offered by other ministers. There is not a minister of the gospel who does not, in offering to serve God and his people, find themselves in the position of needing to sacrifice, to suffer for the outworking of their calling, whichever element of themselves, their lives, or the lives of those they love might be squeezed for the sake of the Church. Ministry, like the Christian life, looks subtly different each time it is gifted by God to a person. Therefore, there is not one ‘successful’ approach to Christian ministry, there are, in effect, as many as there are ministers. Some need to be catalysts, some pragmatists, some spend more time listening, some tearing down the walls of unjust structures, physically. What do all have in common? They shine the light of Christ into the world, as sacramental presences, drawing communities of worship and praise around the divine, communities that are then sent out to act justly, love mercy and walk humbly with God. An effective ministry is not a busy ministry per se. As Eugene Peterson (who always says things that I wish I’d thought of first) says, the busy pastor is the lazy pastor. A good point for reflection, that.

An effective ministry is one that points people to Jesus and his glory. People with impairments and disabilities, temporary and permanent, have at least as much to offer in this as those unfortunate enough to think that they are in no way impaired. Indeed, I, as an impaired person, have a crucial role to play in this. Without us, the ministry of the Church is limited, deficient. With us it is more fully equipped to minister to the world in all its breadth. Those of us involved in this event know this. Pointing out to the Christian world and the world at large that fullness of life, abundance, grace and mercy, as well as brokenness and blessing can come in many shapes and forms is an urgent prophetic mandate in our day. If that means that the functional demands made of priests and ministers have to change or be more readily flexible in some instances, as time goes on, a wider and wider spectrum of the Church is, happily, coming to this realisation too. then so be it.

God identifies us as his children, reconciled to himself in and through Jesus. that word will not be unspoken. I wonder how many people God calls to ordination for whom his word of affirmation and invitation is never heard because our expectations and requirements do not permit it. For the Church holy, catholic and apostolic truly to be living fully, we have to continually be open to expecting the unexpected from God, for him to breathe life where there were only dry bones, for the wind of the Spirit to blow in unforeseen, unlikely places. On that bathroom floor, it felt once more, and all the more, unlikely that I had what it takes to be a leader in Christ’s Church. Yet here I am, when I am in pain and when I am not; when everything is working and when it is not, privileged and blessed to be such a leader, learning and growing all the time. I pray that we would be open across the breadth of the Church, to affirming the calling to Church leadership of more people who may look at first glance like unlikely ministers, but on whom the Spirit rests. Then we may, writhing on the bathroom floor in weakness, or rejoicing in the strength that only the joy of the Lord can bring (or whatever the opposite of writhing on a bathroom floor is), truly be living fully.

On August 25th 2014 I had the privilege of sharing a platform with Mat Ray from the charity Livability as we talked on the topic Disability: Are We Talking About It Enough? – a talk aimed at people of faith and their Churches. As the talk wasn’t recorded (sorry, no idea why) I thought I would put my notes here so that anyone who wants to remind themselves of anything I said, or anyone who might be interested, but who wasn’t there, might be able to see where my part of the hour went. So, here it is, please enjoy!

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Good afternoon. It is a real pleasure and privilege to be able to spend a few minutes with you this afternoon. If you’ve been listening so far you will have picked up that Mat and I do not think there at the present time the church is making the most of the opportunity that it has to change the tone of the conversation regarding disability in our society.

I do not seek more power or influence for the church in the conversation merely so that people might be made to conform to our way of thinking, after all it’s not as if we all agree on what we think anyway, rather, I seek more influence for the church in this conversation because I believe that the church has something distinctive and unique to offer within it.

Whereas throughout society disability is almost uniformly seen as a negative thing which needs to be eradicated as far as possible and where it cannot be eradicated ignored, the church instead has a different message. We have a God who allowed himself to become disabled to the fullest extent of any human person in all of history in order that salvation might be made available to all and that none might be excluded from the offer of his love and participation in the coming of his kingdom. We have faith in which weakness is celebrated rather than something to be avoided and God whose power is made perfect in our weakness. The Christian Scriptures tell us that the body of Christ, the church, being as it is made up of many parts, is only complete when its weakest members are given the greatest honour. Is this the kind of society in which we live today? Are those who are weakest, whether they be impaired or not, given honour, and deemed not just necessary but crucial in the enterprise of societies to succeed to the fullest extent possible? I don’t think they are. I think we live in a society in which many people would prefer that they were not faced with disabled people or the prospect of disability. Only this week, Richard Dawkins made his reprehensible remarks about the moral duty incumbent on us all to ensure that foetuses which have the possibility of Down’s syndrome should be aborted. While of course this is an extreme view and one which I expect Prof Dawkins wished to express in a more nuanced fashion, I think we in the church are faced with a growing clamour in society to understand why disability should be tolerated. This has far-reaching consequences, not least in the areas of medical ethics in terms of abortion, assisted suicide and euthanasia. What a society does not deem valuable it can eradicate with an increasingly clearer conscience.

Now, a couple of caveats. I do not in fact think that, if you are impaired, you are necessarily weaker. Far from it. I hope that some of the Scriptures I’ve already mentioned also indicate that God doesn’t hold that view either. Impairment of God led to salvation for all. Impairment, or the possibility of impairment was present in the original creation. The world God made was very good, good enough for Him, and within it, the possibility of difference, of differing abilities and strengths and weaknesses was built-in. Impairment, development, loss, change, ageing, these were all parts of the original creation. What was not is any hierarchy other than God first, man second, and most certainly what was not present is social disablement. For those who don’t know, social disablement is what happens when I am disabled or disempowered or disallowed from being or doing something in a society because there are barriers erected to stop me doing so. For example, not being able to enter a building, because there are steps, not being able to use a bathroom in a place, because you can’t get a wheelchair in, being denied a job on the grounds of disability, being denied access to salvation, or having my ability or suitability to receive the gifts of God in salvation on the basis of an impairment. These kinds of things have no place in the kingdom of God.
We all need the life, love, hope, peace, joy and freedom offered to us by Jesus Christ. All of us, whether we claim to understand anything about Him and who He is and what He did or not. Jesus lived, died, rose again and ascended once, for all, for us. We don’t have to understand it, it’s probably best we all stop claiming that we do, but we are adopted in to the family of God, heirs to the promise of the spirit of peace. Jesus has done it, it is won, it is for us, so that we can be for Him.

If, in the original creation, all are created equal (let’s just accept that they are), what goes wrong? It’d be easy to just say sin in a serious tone of voice and move on, but it’s deeper than that. Because we choose not to live the way we were designed to, we don’t know how to relate to god, or one another, or ourselves. We’re a mess basically. In trying to put things back together, we fall into fear, selfishness, grabbing for power and authority wherever we can get it. Autonomy is the order of the day. Choice, freedom, which is really no kind of freedom at all. We decide what kind of society we want to be, who’s in, who’s out and how we’re going to include and exclude, on the basis of behavior, economic viability, whether we’re worth it.

Here’s the thing. God already did that in creation. Jesus already did that in the cross. Everyone has the opportunity to be in. It is sacrilegious for us to exclude anyone from the offer of the kingdom of God. Otherwise, how would any of us expect to get in?

Is it about understanding? No. Is it about physical or mental ability? No. Is Jesus all in the head? No. Can I save myself? No. Only Jesus can do all these things.

If we claim that impairment shouldn’t exist, and therefore exclude disabled people because they don’t conform to the kinds of standards we want for our “pure” Church, we are basically telling Jesus to bugger off. The cross can’t happen because it is an offence to our standards of purity. Instead, we need to know the difference between healing and cure. God heals people all through scripture, and today. Ultimate healing, for all, is coming to be the person that they were made to be by God, receiving salvation. Cure is what happens sometimes, either through the medical or the miraculous, when a condition or illness is taken away. We all need the former, that’s the big deal, but because we can’t control it, we sell GOD out by seeking the latter. There’s more to life than this.

God doesn’t include or exclude, he offers full participation to all, in his family, in the coming of His kingdom. It’s only when we live like this that our Churches will begin to live out the radical differences that they have the potential to offer a hurting society.

Most of us think we’re worthless: God made us all to be like Him and grow in to His likeness. Most of us will, at some point, become impaired in some ways, whether it’s physically, mentally or emotionally. This is unavoidable. It is part of life, part of Creation. It is to be embraced. Just as the three parts of the trinity coexist and codepend on each other, so we are to coexist and codepend on one another, as we seek to live to give glory to God. How can we do this if we are elevating ourselves over and above some of our brothers and sisters? How can that be?

Christianity is a future-facing faith. It’s not just for or about now. It’s about what is coming. From the beginning of His ministry Jesus proclaimed the coming of the Kingdom, and so, as well as having the best way to live that there is, now, we could usefully be aware that we have been set free for the purpose of spending eternity with God.

Lots of people ask me about whether I will still be disabled in heaven. Aside from the obvious answer (gold plated wheelchair) there’re a few problems with this question.

We don’t know what heaven will be like, but assuming it is physical, do we really feel like it’ll be like something that we recognize? I struggle personally with the idea of spending eternity in something that looks anything like Northampton.
Scripture tells us that “surely we will all be changed”. As far as I’m concerned, all means all, so if I was changed, I wouldn’t be the only one. It might well be that I’ll be able to walk in heaven, but, honestly, so what? It’s not about me, it’s about God. I spend so much of my life thinking only about me, it’s a scandal.

I realize of course other people think very deeply indeed about wanting to be rid of an ailment, or healed of a memory and so on in the age to come. I don’t want or mean in any way to diminish your desires. Far from it. I believe God loves us enough, more than we could possibly ask or imagine, to deal with us individually, on a case by case basis. What a revolutionary thought. I don’t think God will be constrained by having to treat us all the same. His boundless, matchless love for us is His to offer, not ours to limit.

What I do know is this, whether there is impairment in heaven or not, there will be no disablement. We will, all, finally be free of the burden of not knowing how to relate to one another, not knowing how to love. We will be eternally in the presence of love, grace and mercy. For me, personally, I have a sneaking suspicion that whether or not I can walk will pale in to insignificance next to the possibility of being finally free. That might be a cop out, but in the end, no-one really knows what is to come. We just know that it’s good, better than what we have now, and probably won’t look much like Northampton.