Livability – Haydon Spenceley

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.

Our guest blogger today is Haydon Spenceley. He is 28, a musician, a son, brother, fiancee, Church of England ordinand, wheelchair user and a strong writer about himself in the third person. Really though more than all those things he is a son of God who’s trying to learn to trust and not figure things out.

He writes for us on the abuse he has recently faced due to his use of a wheelchair.

The other day, as I was paying for my shopping in a well known supermarket, a lady pushed past and called me a “stupid spastic”. I think. I say I think that’s what happened because, although I heard the phrase being used, I had no idea that it was directed towards me, until later on. It seems that perhaps I got in her way. Perhaps I just wasn’t supposed to be breathing the same air as her. When I realised, a lot of things happened at once. I was shocked, surprised, disappointed, hurt, and even a little bit amused.

One of the first reactions which came to mind when I did realise, was to wonder how the lovely lady could possibly know me so well having never spoken to me before, or met me, to my knowledge. You see, I am indeed a stupid spastic. Stupidity is, of course, a relative and subjective term, but I have to say that I have, on many an occasion in the past, both recent and distant, behaved in such a way as to be deemed “stupid”. I’ve made a lot of bad decisions in my time. I expect you have too. Even further than this, I am, too, a spastic, given my condition, Spastic Diplegia (a type of Cerebral Palsy). I must admit that I am impressed as to the diagnostic skills of my verbal assailant, who must have analysed my physical abilities and posture very swiftly in order to render such an accurate diagnosis. Of course, I had no time to applaud her obvious medical skill, but I hope to meet her again, so that I can suggest an immediate change of career path.

After my initial defence mechanism of humour died down (see sample above) I quickly got to be quite sad. First of all, I don’t like getting in people’s way. I am self-conscious about such things. Second of all, I really don’t like being called a spastic, however accurate it might be. It seems to me that no-one ever means it in the medical sense and that, instead, it’s a kind of cheap points scoring, one-up-manship, where the point is to once again draw to my attention that I am not as good as other people, even though I know that I am.

You’ll be pleased to know this isn’t a bleating peace. I’m getting to the good bit. As the evening wore on, my mind turned to Jesus (aren’t I holy) and the story at the end of Mark chapter 3. Here, Jesus’ family have decided that he’s lost the plot and come to “take charge of him”. Upon doing so, they’re met with some of Jesus’s best parabolic wordplay. Who would seriously have known what He was talking about at the time? “Who are my mother and my brothers? he asked. Well actually, they were standing outside, as well as being well known in the area, so it should have been obvious. The point perhaps, was that they had failed to understand who Jesus was, and what He was about. Whilst not rejecting His family, He also wanted to make it clear that He was about His Father’s business, and wanted to surround Himself with those who would share in the work with Him.

Proverbs 12:18 talks about the responsibility that goes with speaking words over people and in to their lives.

“Rash words are like sword thrusts, but the tongue of the wise brings healing.”

Even though, in the story in Mark 3, no words of the family are recorded, it is possible to see that what was spoken towards Jesus that day by His family were indeed akin to sword thrusts. It was the same for me on Saturday, as I fairly quickly had to return once again, to the question of identity, and whether I see myself as more than something stuck to the bottom of the shoe of society. I know many people go through much, much worse on a far more regular, even many times daily basis than I do, but it was a jarring, difficult experience.

Over the last few days, I’ve been challenged in two regards:

1. Jesus went through much worse than anything I ever do as He was misunderstood, insulted, unloved and denigrated by those that He loved. He stands with people who are marginalised, even if they are only marginalised for a fleeting moment, and continually lavishes grace, love and peace upon us, that we might truly see that we are who we are because of who He is, and that it is who He is that is crucial.

2. He lavishes all this upon us so that we might be people who are wise, and have wise tongues, or wise ways of communicating. We are to be people of love, charity, kindness, mercy and forgiveness, whatever people do or say to us. This doesn’t mean we always have to be nice. The Church should get righteously angry in its stand for justice for all people that the kingdom might come. It does mean, though, that we need to think about the words we use, the labels and values that we give people. Most of all, we need to remember, at all times if possible, that we are beloved children of God, made to be loved by Him and to love others. So is everybody we meet. So, even as we season our words with salt, and agitate for justice as salt and light in the world, we should know others, and know ourselves, as children of God. That way no words or labels that others place on us can truly hurt us again, and nor should we be guilty of doing likewise.

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