Sabbatical Blog 4

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As my Sabbatical proceeds, I realise that in my reading and thinking I am finding myself almost subconsciously, revisiting the concerns of my three previous sabbaticals and trying to both update my thinking in three different areas and also to see if there are common strands between the three that can I can integrate in ways that will inform and inspire my future ministry.

Working backwards, my last sabbatical, eight years ago, was dominated by trying to make sense of my experience of being the father of a severely autistic child, and to try and discover where God was in that experience. It was not an easy time, and re-reading what I wrote then, I find myself back in the areas of pain and frustration that we were feeling as a family, and the struggle to see where God was leading me through it.

Eight years on, we are at a stage, where it seems that many of the real fears about Mark’s future have been allayed, as at present his supported living arrangements are working well, and we feel very much that he is part of a caring community, who are working for his best interests. There is also something of a feeling of guilt, that with Mark no longer living with us, and not having to face on a daily basis the way in which his needs dominated our family life, I feel much freer to reflect on the experience of having him as a family member in a  creative way. Would I be able to do that if he were not living with us? Am I in danger of looking at the experience of parenting an autistic child through rose-tinted spectacles? 

I came across a book on my shelves that I bought for my last sabbatical, entitled: ‘Spirituality and the Autism Spectrum’, by a Catholic worker with autistic adults, named Abe Isanon. I realised that I had not been in a state to read it eight years ago, and interpreted some of the language as trying to put an unreal gloss on the pain that we were then feeling. This was difficult for me as much of the writing about Christians and disability is inspired by the work of Jean Vanier, out of his work founding the L’Arche communities, and he is someone whom I much admire. But eight years ago I found his writing and those building on his ideas did not speak to where I was.

At the end of his book Isanon quotes Vanier in saying: ‘People who are powerless and vulnerable attract what is most beautiful and most luminous in those who are stronger. They call them to be compassionate, to love intelligently, and not only in a sentimental way.’ I still find that hard. I certainly don’t think when he was living with us that Mark attracted what was most beautiful and most luminous in me, although I did find the ‘call to be compassionate, to love intelligently and not only in a sentimental way’ a constant challenge.

However, I think over the years, I have become more aware of those who have responded to Mark in ways that are beautiful, and luminous. He and we have been enormously blessed by the three key workers he has had over the four years he has been in his current home. Two young adults and a middle aged woman have got to know Mark and come to understand and love him in ways that I find really humbling.

I have also been touched by our two neurotypical children who both talk about their lives being enriched by having Mark in the family, even though it didn’t make life easy for them at times. Our eldest son is soon to move house and he will be living near Mark, and he is genuinely pleased that he is going to be able to see more of him.

But not everyone responds to autism in that way. There were neighbours to Mark’s home who forced the eviction of one of the more noisy residents, and the lack of political support for him from councillors and local MP was depressing. On a different level there are many families that find themselves having to split up because of the pressures, and the different ways different family members respond to them are just too great.

The possibility of a creative way through is not open to all, and that has to be recognised. Our way through has come because we have had support from others. Systems of care have worked out for us, but we are conscious that we are fortunate. It is not true for many, and the language of the current government about disability does not engender confidence for the future, (and how long can we be sure that local government will have the funds to allow Mark to keep his current provision?) People like Mark are the responsibility of the whole of society, not just their families, and it is only when that is recognised that families will have the emotional resources to cope and even perhaps discover the joys of parenting autistic children.

My spiritual director has over the years asked me: ‘where is God’s gift in this?’ when we have talked about Mark, and I have usually been silent.

In recent times, I have at least been able to see what I have learnt. In practical terms I have learnt a little of what it is to be a family on benefits. I have seen the way we have been treated as numbers, always getting duplicated letters, never a personal response, even when we were wrongly billed for £5,000 because they miscalculated the dates he had been boarding at his school. We had the confidence to know that it was their mistake, but for people for whom such a mistake would be a matter of life and death, and who might not have had the confidence to know how to challenge, I gained new insights into the vulnerability of those most in need in our society.

In other ways it has given me many new insights into human nature. Since I first came across the Myers-Briggs Type Indicator nearly thirty years ago, I have been fascinated by differences in personality and what that might mean in terms of self-understanding, ways of working with others and responses to spirituality.

Coming in some small way to understand more about autism has reinforced that interest. The recent understanding of autism as a spectrum condition, on which people sit at different points, has led me to recognise autistic traits in people’s behaviours, and to understand that some things that I find really difficult about people are sometimes embedded in people’s personalities, and it is my job to accept them, rather than their responsibility to change. I do not always find that easy. I think of a very competent church organist I used to work with, who if I deviated from the written order of service, (like calling for the offering before a prayer rather than after it), would flap around at the organ as if something disastrous had happened. I now realise that the only way we can get Mark to church is if there is a written order of service for him, and it proceeds without a hitch. He will shout out and even start self-harming if there is a change to an expected routine.

The resistance to change, which we joke about in church circles, and which I find so frustrating, is for some people a result of having personalities that rely absolutely on routine for positive functioning. I am not saying I know how to deal with that, but I recognise it needs more sensitivity, more forward planning, and perhaps less spontaneity than I personally would like.

In Myers-Briggs terms Mark is my shadow, and as such he challenges me to be more organised, more sympathetic to the need for routine, and to find less emotive ways of relating. That has in turn perhaps helped my own self-understanding and maturity, while at the same time perhaps making it more difficult for me to get in touch with parts of myself which favour spontaneity, and emotional expression.

To my spiritual director’s question: ‘Where is the gift in this?’ I think I can now see elements of an answer, in what I have written above. Mark is very precious, we have learnt an enormous amount from him and through him, and perhaps particularly from other people’s generous response to him. He enjoys much of life, in his own way he values relationships with those close to him, although it is sometimes difficult to gauge how, and even has something of a sense of humour.  

But he is also a troubled soul. He will always find a world with unpredictable people that does not run completely to his routines hard, and he still violently hits his own head to try and block out that world when it gets too much, and occasionally will hit out at others too.

The gift is real, but it is an ambiguous one. When Mark was diagnosed some people in our churches wanted to put a positive spiritual gloss on the situation: We were told: ‘It’s all for a purpose’ and even ‘God must have given him to you because he knew you could cope!’  The church youth group wanted to come round to the house to pray for his cure, and we caused some upset by saying ‘no’, because we have always felt this is who Mark is. He is autistic, in the same way that he is male, and as such we don’t use the language that some disability rights people prefer, saying he has autism. Yes, we would pray for an end to his tantrums and self-harming, for him to gain some greater self-understanding, but not for an end to his autism, because that is him.

Part of my growing understanding of autism is that the world needs autistic people. It seems that certain mathematical skills that we need to understand the world, and develop the technology for us to survive as a human race, are only found in people on the autistic spectrum. We don’t know for sure, but it appears Isaac Newton had many of the traits we would now associate with Autistic Spectrum Condition, (ASC), and the most recent excellent book on autism, Steve Silberman’s ‘Neurotribes’ starts by asking why there is an epidemic of autism in Silicon Valley in the states, where the world’s computer ‘geeks’ live together, get married and have children!

Again an ambiguous gift. The world needs the skills of autistic people and yet they often struggle with the social skills that the neurotypical world deem as essential for usual social functioning. This is beautifully, and amusingly explored in the wonderful American comedy: ‘The Big Bang Theory.’

Mark does not have such gifts, (although he can tell you the day of the week of any date you give him in the 20th and 21st century within two seconds, and we have no idea how!), but the knowledge of the gifts autistic people in general bring to society makes me very suspicious of any ideas to screen out autism genetically, even if it could be done technically.

Part of my spiritual journey, part of my responding to another of my spiritual director’s favourite questions: ‘Where is God in this?’ has been to recognise that there are no easy answers, about a clear purpose, about whether it is even appropriate to talk about cure, let alone pray for it.

What thinking about Mark daily reminds me is that ambiguity is at the heart of existence. He has brought us so much, but at a cost, to him and to us. Any spirituality that does not take account of that ambiguity is wishful thinking built of false premises.

When I did my ‘A’ levels I studied Voltaire’s 18th century satire: ‘Candide’, the story of a simple, everyman figure who lived through a series of great traumas and which allowed Voltaire to offer a funny, but profound critique of the institutions of the day. Always at Candide’s side is his philosopher friend, Pangloss, whose constant mantra when something awful goes wrong is ‘All is for the best in the best of all possible worlds.’ Voltaire shows how naive and stupid a statement that is, and he offers a strong critique of the religion of that time for embracing those sorts of ideas.

I worry that some of the spirituality in our churches verges on ‘All is for the best in the best of all possible worlds.’ Some of the hymns and songs that I hear seem to order me to praise God in ways that make me either try and forget, or worse even deny, that things are not right in the world and in people’s individual lives. I know one of the hymns that people miss in Singing the Faith is ‘Yes, God is good’ , but does all creation sing out that ‘God is good?’ Does every day of our experience with Mark make me want to sing that? I find a faith that asks Christians to hold on to a God who will wave a magic wand and put everything right is one that I cannot subscribe to.

God’s goodness is real, but it is often hidden, and I don’t think it is my faithlessness that finds it impossible to sing that ‘all seem to say in accents clear that God is good.’

That is why for me the journey of Holy Week is so central to the life of faith. The journey of pain and suffering is real; the evil, the violence, the despair, the godforsakenness are real too; and in Jesus, God is at the heart of it. Jesus does not deny any of this. He is forced to enter into it. (again a line in a hymn I mostly love jars here:  ‘yet cheerfully to suffering goes’ doesn’t ring true.) But ultimately, in ways beyond understanding, through that identification with suffering and pain, the possibility of transformation opens out.

The passion story for me is so powerful because it speaks of the ambiguity of human existence, of sorrow and joy, of evil and goodness, of hatred and love, of loss and gain, of death and life and through my experience of living with Mark, it is so important that the ambiguities that I have felt as his father are reflected in the central story of my faith.

I know some long for more certainty in our faith, clearer teaching from the pulpit, less questioning, but for me, a faith that does not reflect the realities of our experiences is wishful thinking.

So ‘what is the point?’  others would say. Haven’t I just proved the absence of God, the randomness of human existence?

Ironically, for me, it is in that ambiguity that God is found. I am not sure twenty years ago, when Mark was diagnosed, that I would have had much time for anyone who would have said that living through the experience would offer a path to transformation. I am not really sure even now that I would call it that, and there have certainly been times when I have struggled to engage with God on the journey, times when the effort of daily coping has cut off any sense of anything deeper.

But the journey goes on, and engaging in that journey from a faith perspective, rooted in the story of Jesus, perhaps particularly his passion, it is a journey of discovery and I am discovering that it is an encounter with a mystery that can offer me glimpses of something that points to a deeper truth, and a reality where there is faith, hope and love, even if it is usually beyond my grasp, and that is a journey that I still believe is worth pursuing.

Next contribution, the place of music in that journey for me.

Next: what does all this mean for the church?

 

Sabbatical Blog 4