WHERE IT ALL BEGAN
“Everything starts somewhere, though many physicists disagree. But people have always been dimly aware of the problem with the start of things. They wonder how the snowplough driver gets to work, or how the makers of dictionaries look up the spelling of words.”
Terry Pratchett, Hogfather
This book will not always show the three of us in a good light. Indeed, it will sometimes show us as a bad-tempered old fools, full of self pity and more than a little bitterness. Although we have in many ways come to terms with our disabilities and indeed we would argue that in many ways we have experienced God’s healing in our lives, our disabilities have left us with scars and a certain amount of baggage which is often hard for us to simply put down.
You might ask why we would risk being seen in this way... Well, above all we wanted to give you an honest account of our experience of disability, warts and all. The world of disability is strewn with obstacles, often placed there by those who are simply unaware of the effect their actions can have on the life of a disabled person.
You will sometimes hear us rant and rave and generally stamp our feet about these things and we know this may be difficult and often not at all pretty to watch. At one point, we thought about removing all such material from the book and had gone as far as highlighting huge tracts of text, ready to delete them. Then we realised there would be very little left as we rather like ranting, we’re good at it, it’s a gift and in any case it would in no way represent our true feelings as they arose along this journey.
So we eventually decided to give you the unedited version – including the tears and the tantrums, the anger and joys – and let you form your own opinion. Sometimes what we say may surprise you.
Sometimes it may make you sad. Sometimes it may shock you. We suspect it will from time to time even cause offence. Occasionally, our thoughts may give you a laugh. And we earnestly hope and pray that just once or twice they might inspire you.
What we have done, however, is reach an accommodation with our disabilities so that we are no longer at war with them. We are now able to wear the label of disability and not feel embarrassed or hurt by it. It is a kind of coming out of the closet experience. It has taken us a long time to get to this point... Even if we had known years ago what we know now, we cannot honestly say that we would have done things any differently.
Through this book we want you to gain a sense of what life is like for disabled people in and around church in the UK in the early 21st century. People with disabilities face prejudice, abuse and ridicule on a daily basis, not just in the world outside but very
often in the midst of our church spaces, spaces that should be free from fear for disabled people. This level of abuse can cause them to lead lives of segregation, isolation, fear and – all too often – loneliness. We long to see many things but more than anything we want to see a church where opportunity is open to disabled people on an equal basis. We are very sad to say, we still have a way to go.
If more disabled people are to achieve their full potential, to enter in to ministry, to share their gifts with the church, if we are all to truly “mutually flourish” then church needs to change. This will only come about when we’re able to face the issues honestly, all of us together, disabled/able. This book is simply our attempt to create a debate about how that will be possible.
As a trio of disabled people we can say that yes, life isn’t perfect. But it can be such fun. And it really can be fulfilling and worthwhile. Disability is bearable and it is possible to lead a full life despite it. Believe us, we do.
Our intention here has not been to write a text book or an academic thesis on the church and disability, there are several of them out there and they seem not to be reaching people more than at a cerebral level. We make no apology for the fact that we want to hit you right in the gut. If you do not finish this book feeling in some way challenged, changed or moved then we will have failed.
Words like theology, Christology, ecclesiology and other such grand terms are not the currency we deal in here. On the contrary we are far more interested in words like love, belonging, mutuality, flourishing, welcome and interdependence. These are words that can be felt by everyone no matter what their intellectual ability, words that have nothing to do with the size of a person’s IQ and everything to do with the size of a person’s heart.
There are plenty of studies out there that look at such things, however for those of us living with disabilities within and for that matter outside faith communities it is impossible for us to be that detached from the political, emotional, psychological, economic and prejudicial effects of disability and we are not going to attempt to try it here, this as we will often tell you, is not Disney does Jesus, on the contrary, this is Jesus for grown ups and carries an eighteen certificate.
Much of what is written on disability theology fails to tell first hand what life is like for disabled people from the inside, the poverty, the prejudice, the abuse and the lack of opportunity which slowly, day by day grinds away at the very soul of a disabled person, often leaving bitterness and hurt in it’s wake. We simply can not do that because as disabled people ourselves it would be impossible for us to be that dispassionate, indeed it would be wrong, this is a warts and all exploration of disability theology complete with all the pain and emotion and yes the joy and insight that living with a disability can bring.
We wanted to write a kind of disability theology for dummies, stripped of academic language, a book that was accessible to theologians, disabled people and the simply curious, if this book is not of its self inclusive then we will have failed.
We wanted to write a book that left our disabled brothers and sisters in no doubt where we stand. We wanted to express our solidarity with those that cry out for recognition, acceptance, love and understanding.
We’d love to tell you about the journey that led to the formation of Disability and Jesus, how it began with a kind of road to Damascus experience that came to us in a flash of inspiration, a fantastic spirit filled moment as a worship band played triumphant chords and hundreds of people were worshiping the Lord with arms raised to heaven.
We’d like to be able to describe how it was such a beautiful journey, to make the movie of that journey in the style of Michael Landon of “Little House On The Prairie” fame but in truth it was nothing like that.
The truth is that for the three of us at the heart of Disability and Jesus this has been a life long journey both as individuals and now collectively. It has often been painful, has sometimes led to despair and has often caused us to question our own validity as being fully human and fully part of his Kingdom. It has even caused us to shout to the heavens and curse God for allowing our disabilities on our bad days and then again to raise our voices in praise for the opportunities and experiences we would not have had if it were not for our disabilities on our good days.
Within most churches but especially those of an evangelical or charismatic tradition it has become the norm, the accepted form, that someone will stand up and give their testimony, a heart rending story that normally runs along the lines of, life was shitty, usually there is some dreadful tale of addiction, poverty or abuse and then then the person has an encounter with Jesus and now life is totally transformed and from then on everything is simply fantastic, what is that dreadful word used in such places? Oh yes “awesome”!
Yes we know this is an over simplification and perhaps a little unfair but if we are to be honest it’s a scenario we have all witnessed many times over, a scenario which for many disabled people is an obstacle within it’s self.
Many disabled people feel they fall short because they can not give such a testimony. How can they ever be acceptable to a church that seems to require you to have such a testimony as a kind of key to the kingdom, a right of passage, a testimony they know that no matter how hard they try, they will never be able to achieve.
For the three of us our individual testimonies simply don’t read like that, yes we’ve all had transformational encounters with Jesus, mountain top experiences, those moments we have experienced the real power of his presence, moments that have sustained us through the desert experiences, the dark night of the soul, otherwise we would not be here writing this book, telling our story. However, many of the shitty bits of life remain, we carry them with us in the form of our disability. For us life is about holding in tension the shittyness of living with a disability with the new creations we have become in Christ. There are still many days where Jesus seems far away, where the pain of our disabilities feels unjust and too much bear, days where Dave will tell you honestly, sometimes he just runs away.
Days when just as Jesus did we cry ‘my God, my God, why have you forsaken me”. It is on those days that we cling even more tightly to the memories of the days where we have experienced the real presence of Jesus, it’s on those days we doubt our right to belong as we are unable to give that testimony that says now that I know Jesus life is fantastic, life is “awesome’!
Dave would tell you he has gone through long periods, sometimes years, where he does not feel he has heard from God, years where all he could do was cling to the memories of those experiences of Jesus that had moved him to the core, trusting that God was still out there somewhere and that one day he would hear from him again.
This book is simply an attempt to share honestly with you where our journey of prayer, study and lived experience has led us to thus far along the road and to indicate to you the direction where our thinking may take us in the future. It is also an opportunity for you to join us and help us shape that journey, we want you to regard this as a corporate exercise, you are not just hear to read, we are inviting you to fully take part, after all we are involved in the pursuit of inclusion.
It is not a book full of answers because we haven’t found them all yet, it is a book full of questions and more importantly consolation, hope and encouragement as we seek Jesus company with us along this pilgrim road.
All we are offering you is the chance to journey with us, to ask those questions and to hold all those things in your heart as we seek to work out what it is that God is teaching us as we struggle to form a model of disability that is radically different from the existing models of both medical and social to create a model of disability that is quite simply, “The Jesus Model”.
It is whilst on this journey we have learned the true meaning of Emanuel (God with us). Not in some distant way but along side us, sharing the road. We are not in some Sunshine coach, simply lumped together with all the other poor disabled people but we are at the very heart of this pilgrim band, walking arm in arm, able and disabled, often holding each other up.
As we walk we share our dreams, our fears and our questions. It is not all pretty, sometimes it gets more real than any of us would like or care to admit but there is a strength which comes from being together, Emanuel and his band of brothers, his pilgrims. God with us and us with him.
We have learned that on this journey there is no such thing as “people with special needs”. We have learned that each of us is in need but that he has planted the desire to succeed within our very DNA. There is no helper or helped, just a band of needy pilgrims sharing a journey depending on each other, we rise or fall together.
Sometimes you may want to cover your ears as the questions may seem simply too painful as they uncover areas that are simply too raw. Sometimes the things we have to say may challenge deeply held beliefs that may be at odds with your own or those of your churches thinking, we know there are some churches where even to explore such trains of thought would simply not be allowed. The truth is, we make no claim to being right, we simply put them out there because as we said nothing should be off the table, we feel a very clear calling to ask those questions, a calling we have come to know as the heretical imperative, a call to sometimes think that which until now has been unthinkable. Believe us when we say that to be scared stiff by this has been our experience too, we have worried that daring to raise such questions might put us at odds with those we consider ourselves in fellowship with but not to do so would be dishonest.
Some of the questions are even too painful for us, our prayer would be that with God’s help we would be able to face them in time.
Within the chapters of this book we seek to create a space where we can all think new thoughts on the theology of disability without the scariness of the theology police declaring us “unsound”, we’ve all met them, those stern faced characters that sit arms folded, on the edges of our congregations, tutting, raising eyebrows, huffing and puffing, never venturing an idea or opinion that is not part of the accepted canon but rather sit there waiting to pounce on anyone that dares to have an original thought that has first not been run by the church elders. We know that nothing of the Spirit will find it’s way through that approach. We are fed up with it, it only serves to disable us even more, to those people we simply say “we are not playing”, we have played that game for far too long and we know that it is the road to nowhere. Disabled people have been very patient with the church but now we have a clear sense that God is saying something about this being our time.
So far much of what has been written on disability theology has been written from an observational view point, not from someone living within a disabled body, struggling with the day to day of all that that can bring. We need to give disabled people licence to tell their stories, no matter how shitty, no matter how difficult we may find them to listen to and we need to be prepared to actually listen, no matter how uncomfortable or challenged we may feel, to withhold judgement until we are fully conversant with these stories. Let us also say here and now if you are so offended by the word “shitty” that you are considering putting the book down, then do so now, simply step away. We will never get to grips with the heart of the matter if we are not prepared to get real, a subject we will cover in more detail later.
We believe it is in the midst of this pain that we are most likely to hear the voice of God, at the very point where it’s all getting too much and you want to put the book down, we are finding that is so often the point where Jesus speaks.
If we have never gone to the edge of the cliff and looked over, then how do we know it is dangerous. We trust in a God who will not let us fall off but we have learned that sometimes he gives us a glimpse of what is over the edge and asks that we face it, trusting in him to not let us fall.
Join us as we throw the box of disability theology up in the air and try to see what falls out and as we sift through the debris to see what is of God and what he would have us discover and that which he would have us consign to the theological scrap heap.
Imagine yourself as having just witnessed a car crash from the point of view of a passer by, as you stand there on the kerb, shocked and scared wondering what to do, do you call for the emergency services, do you go over and offer what meagre first aid skills you might have, are you simply so shocked that you are frozen in to inaction or do you feel this is all much too complicated and messy and decide to walk away rather than get involved in something you know is going to be difficult and upsetting?
For the three of us this analogy serves very well to describe what has been the church’s reaction to disability for many yeas, not unconcerned or necessarily uncaring but certainly confused, frightened and simply wishing it wasn’t there whilst those of us in that crash simply want you to be with us, to sit with us in the road till the ambulance comes and for us to be with you. Just as in that scene just described the Church’s panic, and fear of getting it wrong is often the very thing that freezes it in to inaction.
The truth about Disability and Jesus is that it was born out of this pain, that feeling that we were the ones in that car crash, left sitting in the wreckage, in the middle of the road as no one came near and those on the sidelines juts look at us in a state of utter confusion, that place that leaves us feeling alone, excluded, on the outside of something, like we have something contagious that everyone is frightened of catching.
The truth about the formation of Disability and Jesus is that it was born out of pain, out of grief, out of frustration and even some bitterness. In reality it came from a place of more than a little anger, it was in fact a real cry of the heart.
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