PILGRIMS IN THE DARK
‘Pilgrims In The Dark’ (Part One: ‘The Roads That Brought Us Here’) begins with various quotes from people – well-known and unknown, living and dead, as the authors seek to build a foundation for the movement that is called ‘Disability & Jesus’ and then move on to the ‘About Us’ section in which we gain an understanding of how the movement came into being.
From the outset, it is clear that the authors are not looking for sympathy, but that rather they are campaigning for radical and long-lasting change. ‘Inclusion’ is a word that comes easily to church straplines and slogans, but true inclusion is a rocky road that must be walked with integrity if we are to truly be churches and people of inclusion. This book is an important rock on that road!
The authors sometimes feel “as though we have a foot in two camps, one in the church and one in the secular world of disability…” and those feet need to be brought closer together, and soon. The authors are clear that they have loyalty to both camps, and it is a loyalty which they intend to keep.
“We are people who seek to practice and struggle so that we may achieve radical hospitality for all people, abled and disabled. We recognise the powerful inequalities that exist in society between those who are seen as the norm and those who are marginalised by the norm, marked down as disabled and hence looked on as something of a burden, an added cost, an inconvenience and in some way less.”
The authors are able to draw on a network of disabled people and can thus speak with a greater wisdom than three people would normally be able to do so were they on their own. They are also ably assisted by (former guide dog) Jarvis! None of the three authors are claiming to be “experts in every area of disability”, but see their role as promoting a debate on the theology of disability and inclusion within churches. However, the debate is for everyone, and every church needs those who can see through the eyes of disability, whether they themselves are disabled or not.
The authors speak of the need for churches – and society as a whole – to “seek what is fair for all people regardless of ability, wealth, status, IQ or social standing.” The authors seek something different, radical and new – and these are precisely the attributes that church has historically manage to push out into the margins.
The authors want to move beyond what they call toothless theology and they believe that their understanding “of who God is and what God desires for humankind is not a contract for good behaviour now in exchange for heaven later.” Amen to that, but is another idea that is deeply shot through the church in the West, and one that needs to die as we realise that church is about making disciples, not trying to win converts.
The three authors are saints – along with all of YHWH’s children – but their book sometimes shows them as “bad-tempered old fools, full of self-pity and more than a little bitterness.” As you read this book, you need to understand and bear in mind that their disabilities have left them “with scars and a certain amount of baggage” that they find hard to put down. Honesty rules in this book, even if there are times when we (and they!) might wish that it didn’t.
The authors “rather like ranting” and venting their frustration, anger and hurt is simply them being honest as they tell of their experiences in a world that favours the able, the wealthy, those with a high IQ, and those with good social standing. “People with disabilities face prejudice, abuse and ridicule on a daily basis” and, unfortunately, that is just as true in the world of church, when it ought not to be so. This book “is Jesus for grown-ups and carries an eighteen certificate.”
The road to ‘Disability And Jesus’ was a painful road for the authors and their telling of the despair, anger and frustration reads like a modern version of the Psalms. “There are still many days where Jesus seems far away, where the pain of our disabilities feels unjust and too much to bear, days when Dave will tell you honestly, sometimes he just runs away.” ’Disability And Jesus’ “was born out of pain, bitterness, grief and frustration” and is a clear cry from the hearts of the authors to anyone and to everyone who will listen with the ears of their heart in order to see with the eyes of their heart.
The abuse that these three authors have each individually suffered in church is horrific, though not surprising, unfortunately. The same kind of stories can be heard from others that have been excluded from church – such as the LGBTIQ+ communities – and I sometimes wonder if churches will ever truly live what they are in the realisation that in Christ there are no divisions of any kind.
In this chapter, the authors began studying the Scriptures in order to discover the attitudes to disability found there, as well as reading disability theology (though often written by able people), talking to disabled people, and much more. This book is them sharing with their readers where that journey has brought them thus far. I can understand that their research raised more questions than it provided answers.
Their first discovery was the contrast between the Scriptures of the two covenants. Under the old covenant, any form of blemish excluded people from full participation in worship while, under the new covenant, all were welcome without favour or exception.
MODELS OF DISABILITY
The authors observed that society historically tended to regard any sickness or disability as something to be fixed in order that the person might live a ‘normal’ life. Especially in Christian circles, if the fix did not work or no fix could be found, then the problem lay entirely with the afflicted and was their ‘cross to bear’.
In the 1960s, the situation changed and the onus of responsibility then lay with society that was often unwilling (or unable) to ‘adapt its norms in the light of people with additional needs.’
Laws on disability and equalities acknowledged both of the above models, and referred to ‘Reasonable Adjustments’ that needed to be made by employers, businesses, and so on. While the law achieved a lot, it did not define what ‘Reasonable Adjustments’ meant, and the authors believe that the law did not go far enough. However, they further believed that church should be ahead of the game and not constantly playing catchup.
The authors cite many examples in which churches were not even trying to play catchup, but were only organised for able people. The authors made a few suggestions for how church could be ahead of the game, such as:
- Have a clearly stated and observed disability policy.
- Adhere to the law on disability and equality.
- Include disable people in planning and leading.
- Make resources available before the event.
- Take disabled people and their needs seriously.
- Clear signage.
- Clear welcome to all.
- Water bowls for guide dogs and assistance dogs.
I am sure that, since the publication of their book, the authors could add a lot more to that list.
THE CHARITY APPROACH
In this model, people are (perhaps unthinkingly) segregated into the ‘helpers and helpees’, which denotes those who can minister and those who are to be ministered to. People with disabilities are all-too-often placed only in the ‘helpee’ category. Thus, disabled people become targets of ministry because they are seen as needing charity.
Disabled people should have the same dignity as able-bodied people, and the authors explore that in this chapter because a disabled person’s capabilities are often defined by the helper, rather than the helper asking how (or if) they could help. This chapter contains personal stories that highlight how often disabled people are treated as less than human. The authors then suggest and explore a better way that they call the ‘Pilgrimage model.’
THE SPECTRUM OF ABILITY/DISABILITY
In this chapter, the authors ‘reflected on some of our recent learning as we sought to understand more about autism.’ They concluded that ‘the autistic world has a great deal to teach the wider disabled community about disability in general.’ This immediately sparked me in remembering my own reflection on autism from the perspective of my own childhood and youth. The high value of the thinking in this chapter means that I will say no more about it in this review.
A CHURCH ON THE MARGINS
The authors point out the painful truth that ‘the church in the UK had become the safe haven of the comfortable middle classes…’ No wonder, then, that the authors believe that church needs ‘a major rethink on exactly how we do Church.’ The authors’ thinking around this needs to be read and read again before we open our mouths in response.
THE CHURCH TRIUMPHANT?
Like the authors, the subject of triumphalism is one that has occupied much of my thinking, writing and teaching. The authors highlight what triumphalism has done through the centuries, and it is something that we need to take a very close look at, if we are to truly represent the victory of Christ on the cross.
LETTING GO OF PRIVILEGE
The authors explore triumphalism and they remind us (in their own words) that, for far too long, the church has proclaimed that it has all the answers and the world will hear those answers whether they are listening or not. Of course, people need to come to church to hear those answers and, if they do not want to come to church, then that is their problem – not ours. For too long church has thought this way. The authors seek a different way.
The ‘Church Triumphant’ has no room for asking questions, it has no room for doubts, it has no room for the struggling. The authors state that church should be able to handle questions and it should be able to chair debate, and all without going into panic mode because the system is being questioned. The church that was once in the centre of society is now church in the margins. The authors view this as an opportunity, since Jesus himself was to be found out in the margins, and they explore that opportunity.
MADE IN HIS IMAGE
The authors ask a disturbing question in this chapter: ‘What if disabled people are closer to the image of God than the rest of us…?’ This question raises another question: ‘What is the real person…?’ The authors explore the words ‘image’ (as in made in the image of God) and ‘illusion’ (which describes much of the Western world’s focus on how we look). Illusion is shot all the way through church.
A THEOLOGY OF PAIN
For people like me who still love the Calvin and Hobbes comic strip, their exploration of the monsters under the bed brings a smile and a nod. However, the monsters under the bed that the authors are talking about are suffering, pain and woundedness. The authors declare that our culture today teaches us to avoid suffering – but why is that so?
‘When we cannot even confront our own sufferings and wounds, how can we ever expect to grow in compassion and learn to suffer with others in order to demonstrate love and service?’
‘The question is not whether the church is called to endure people with disabilities, but whether the church can learn something more about the endurance to which Scripture calls all Christians, through sharing life with people who struggle and persevere with their disabilities, people whose endurance has been sorely tested.’
In this chapter, the authors challenge the content of our worship and praise catalogue and, in doing so, fasten our gaze onto the Psalms, more than one third of which are laments. ‘So where are the laments? Where are the musical vehicles for the expression of pain, sorrow, loss, devastation?’ Jesus wept. Perhaps Jesus still weeps.
‘Suffering shapes us. It will either make us better or make us bitter.’ Why is it that ‘experts’ on disability are not themselves disabled? Are the disabled not the best people to teach and train us in what it means to be disabled and how best to include disabled people?
‘Often academics consult with the parents of disabled children rather than with the disabled children themselves. As a result the solutions they offer can be more designed to alleviate the fears and concerns of the parents than in the best interest of the disabled child.’
The authors point out that what is often called ‘inclusion’ is, in fact, ‘merely accommodation or tolerance.’ Should disabled people have to justify belonging to church and should disabled people have to justify being part of the Christian community? Once again, the personal experience of the authors in various churches leaves me shaking my head in disbelief.
I loved the authors’ declaration that human beings are ‘differently-abled’ and that we really should stop thinking of people as being able or disabled. There are many variations of disability, as the chapter on ‘The Spectrum Of Ability/Disability’ made clear earlier.
THE WOUNDED HEALER
How easily church sings of triumph and Easter and, in doing so, shuns the dark side of Jesus’ life and mission. He was – is – the wounded healer, just as the Father was himself wounded.
‘YaHWeH saw that the wickedness of humankind was great in the earth, and that every inclination of the thoughts of their hearts was only evil continually. And YaHWeH was sorry that he had made humankind on the earth, and it grieved him to his heart.’
HEALING AND CURE – THEY ARE NOT THE SAME
The difference between healing and cure is a very important distinction to make, and then to explore as the authors do in this chapter. They make some very important points in this chapter (as they do throughout the whole book), and this distinction is one that able people should explore and debate alongside disabled people.
TELLING OUR OWN STORIES
The authors tell their own stories in this chapter and invite you to skip ahead if you do not like stories. Do not skip ahead! Jesus was a storyteller. Just because church has long lost the ability to tell stories in favour of rudely preaching ‘truth’ at people does not mean that stories are irrelevant. Read their stories, and laugh and weep with them for a while. Tell them your story too!
‘On a pilgrimage, the journey is in many ways more important than the destination. It is in travelling together, sharing the road and the miles together, learning together, that those on pilgrimage find they are being blessed by one another and by God.’
INTERDEPENDENCE (MUTUAL FLOURISHING?)
We are family; we are one. Easy to say; easy to write. Not so easy to make real with the people around us. Even harder for the unchurched to see and to know who and what we are. The authors explore something of what interdependence really means.
NOT AS THE WORLD SEES
‘We have to be prepared to accept, enter into, and deal with the realities of one another’s situations not just tinkering around the edges but with a wholehearted commitment, a commitment which will surely mean we will be inconvenienced, we will have to compromise and be prepared to make sacrifices so that all can feel included, so that all can flourish.’
DISABILITIES IN HEAVEN
Ah, now this question is such an important question that will challenge prejudices and shake foundations. Jesus still bore the marks of crucifixion in his resurrection body – will we?
THE ROLE OF SOCIAL MEDIA
Social media was the birthplace of Disability And Jesus, and it is the proving ground in which all people – not just Christians – show themselves as their true inner nature is expressed. Disability And Jesus have a virtual community, a virtual office, and a strong online presence. Use social media as a debating forum in which difficult questions and contentious issues can be tackled – but all in good faith, good humour and good love.
This has been a long book review. It may seem that I have quoted so much of the book that there is now no need for you to read it – but that is a long way from being the case. The authors ask a lot more questions than they give answers, and that – for me – is one of the highlights of the book. As a pastor, I was often told that I asked more questions than I gave answers.
Buy the book and read it carefully and thoroughly. Get your leaders and friends to do the same. There are important issues that we need to address – but without giving cheap and easy answers. Life is too precious for that. In closing, I bless Jarvis for the huge difference that he made to Dave’s life. From one David to one Dave, to Katie, and to Bill – bless you and bless your fellow authors and pilgrims.
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 Genesis 6:5,6
 My story begins in the first section of my book ‘The Christ-Centered Life: Deep Calls To Deep’ and, in reading it, you will understand why thinking about the autistic spectrum was an important subject for me.
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