Thursday, January 31, 2019

I've been working on some book ideas, I had a book out previously simply about my sight loss but it made no reference to my faith, I am rewriting from a faith perspective and bringing things up to date, here is the first draft of the first two chapters, I'd really appreciate you getting back to me via Twitter to let me know if this is something I should carry on with before I commit too much more time to it. 

Out Go The Lights.

You know that recurring dream, the one that comes back to you night after night, that plays on your worst fears, the one that you just know will ultimately come true? Well it’s that one, so I tug at the hair on the back of my hand and it hurts like hell which tells me I can’t possibly be asleep and this must be really happening. Bugger!

I’m in this old Victorian building, you know the ones,  the ones designed to intimidate the little people, the ones designed to keep the plebs in their place.

Everything about this building makes me feel small and insignificant, I’ve been coming here regularly since childhood, the corridors are filled with memories, non of them good. They echo to the footsteps of the lost and bewildered, scaring me to the very core, filling me with panic, giving me the urge to run.

This is the Royal Victoria Infirmary in Newcastle. This is the place I spent the first two years of my life in.

There is a tangible atmosphere of fear and dread which hangs in the air like the smell of damp leaves on an autumn day. The pain of all who have suffered here permeates the very walls, oozing from the wood and the stone, drifting through it’s halls like mist on a November morning.

This is  a cold place, a sad place, a place where too many dreams have been broken, too many hopes dashed. Like walking in to a moorland fog, before you know it you are completely lost, cut off, you can’t find the way back, you look to the ground for your footprints but they have vanished, you’re left with no idea how you got here and even worse no idea how to escape.

I realise there is no way back, I’m filled with feelings of panic and dread. 

I approach the huge oak doors which lead to the ophthalmology department. I can see my own reflection in the brass doorplate, the face that stares back at me carries a look so familiar, it’s a look I know only too well, the look off a person that is desperate, frightened and and above all, angry, I know this look so well I have seen it every morning over the last twelve years as I’ve gazed in to the shaving mirror. 

I enter a packed waiting room, a room full of people, people just like me, people who have spent years in denial, afraid that their sight loss would be used as a weapon against them, a thing to hold them back, a thing that would destroy all their hopes and dreams. Their faces all share that same haunted expression , the expression of those who have spent too long on the run.

After reporting to the receptionist, I sit down, comforting myself that I’d managed to put this moment off for years . I’d had a good run but now there was music to be faced. Sight loss has now become such a huge issue for me I can no longer hide it from other people or pretend to myself that it’s not really happening. Shit, I think to myself, I’m not properly dressed for this, I’ve got the wrong shoes on. I’m wearing my winter boots, I need my trainers on a day such as this, the impulse to run straight out of here is huge, I’m gripping the edge of my chair till my knuckles go white, forcing myself back in to the seat, forcing myself to stay put when every fibre of my being is screaming “ run Dave, just bloody run”!. I’ve been running away from this very moment for more than twelve years now and I know it must be faced but please don’t expect me to be happy about it because I’m not, I’m just bloody not and you can’t make me!

Running has been my coping mechanism for sight loss thus far. For years when ever blindness was broached I simply laced up my trainers and ran. I would jump on a train and head for some place where no one knew me, always without a by-your-leave to family, friends, employers or colleagues and I’d simply drink myself in to oblivion in the vain hope that this would dull the pain. It never did and anyway there’s always the morning after the night. I could go missing for days, sometimes not coming back until someone managed to track me down and drag me back.

Of course I knew this was wrong, I knew how much it was hurting others especially my wife Denise. I simply could not face that dreadful sightless alternative. 

Brendan Foster and Steve Cram were not the only great runners from Jarrow I could give those buggers a run for their money any day of the week. 

Meanwhile back in that waiting room I’m watching the seconds turn over on the digital clock on the wall. I’m here today not because I’ve finally seen sense, no I’m not that good, I’ve simply run out of options, my sight loss is now so bad it simply can no longer be hidden. I want to lash out at someone or something but there is no one to blame, not even the God I have followed since childhood, the God I knew was grieving with me, hurting for me, the God that was even with me in all the running, all the denial, all the hurt and shame. Deep inside somewhere I know this is simply a random event, a bit like a car crash, it could happen to anyone. It is nobodies fault. Even knowing all this I’m dammed if I’m going to give in graciously.

Here I am about to hand over control of my life do the doctors, social workers and various other do gooders, they will lead me in directions I don’t want to go, they will make decisions on my behalf, decisions which are quite simply not theirs to make. Fuck! How did I get myself in to this situation? 

It feels totally hopeless, I watch the other poor lost souls in this waiting room. A room full of people just like me, people who know only too well they are about to lose their identity, we are no longer in control of our own destinies. 

Suddenly a disembodied voice says You can go through now Mr Lucas”. 

Obediently, I walk in to this tiny little consulting room and am instantly transported back to my childhood. In my mind’s eye I can picture my mother spitting on her handkerchief and rubbing the chocolate stains from my chin. (She would go on rubbing until the skin was red raw.) As I remember this I feel her hand on my back pushing me forward over the threshold and I can feel my feet slipping and sliding as I try in vain to resist. 

I do a reality check in an attempt to pull myself together. My wife, Denise, used to be a sister at this hospital. For her it was simply a place of work, a building that held no terror. For me, though, it’s always been a place of fear. Just stepping across the threshold instantly transports me back to the most painful parts of my childhood. Here I am, a 40- year-old man with the mindset of a six-year-old. Damn this place! And damn the circumstances that have brought me here. 

Really, this building should feel like a second home. As well as my sight impairment, I was also born with a heart defect. So between the Eye Department and the Children’s Cardiac Unit, I often spent long periods of my childhood in various parts of this hospital. 

How is it that one building can rob me of all my adult faculties and return me instantly to my childhood? How come I suddenly feel I’m no longer in control? How come other people get to make all the decisions here? Why is it that my opinions are of no importance to anyone here? 

Why is it that every time I walk through that huge oak door I feel like a midget in a world of giants? It’s like Lilliput in reverse. I’m dammed if they’re going to tie me down. 

A phrase from my childhood echoes in my mind: ‘Shut up and do as you’re told.’ My neck begins to stiffen and I feel my shoulders hunch. Again I return to being a child with short trousers and little National Health glasses that leave deep grooves behind my ears. Here I am, a 15-stone six- year-old, about to face up to something I’ve spent more than 40 years trying to avoid. 

I had been a premature baby, my gran always was quick to tell people “he weighed less than a bag of sugar you know”and as well as my sight issues I had heart problems and several other issues, I was twenty eight months old when I finally left this hospital for the first time and ever since had been back for frequent eye and cardiac checks, I hate the bloody place! It’s full of ghosts, a place that fills my nightmares.

 A Bloody Guide Dog!

I’m still in childhood mode when I sit down in this woman’s office. I look at her and know at once she’s more than just a megalomaniac, she’s a witch. She reminds me of Morticia from The Addams Family, I can picture this woman sitting in that big wicker chair. I know I’m being unreasonable but at this point in time, no one could change my mind. 

The woman smiles sweetly. The six-year-old me clenches his teeth and waits for her to ruffle my hair. I promise myself that when her hand comes towards me, I’ll bite her fingers. Nevertheless, I try really hard to force the six-year-old me back into the deep recesses of my mind. Making another big effort, I smile right back. Anything she can do, I can do better. 

Morticia rolls her eyes at me. I roll them right back. I concentrate really hard and force my features into what I hope is my most withering look. I don’t know why really, because I’ve often used that look and to date no one has taken any notice of it. Why it should be any different today, I don’t know. Time seems to stand still, the silence is numbing. It seems to last an eternity. I’m waiting for her to speak but when she finally does, I’m totally unprepared for what she has to say. 

“I think it’s time you thought about a guide dog.” 
My world explodes. The ceiling seems to be falling in. She’s still speaking but nothing is getting through. All I can hear are the words ‘guide dog’ echoing in my head. Guide dog? A fucking guide dog?! They’re for blind people. What the hell is she trying to say? Is she crazy? Do I look like a blind man? A High Court judge inside my head suddenly booms out: 

‘DAVID LUCAS! You shall be taken from here to a place not of your choosing and be given a guide dog. Henceforth you shall be known as ‘Blindy Lucas’. Children will laugh at you in the street. Middle-aged women in twin sets and pearls will coo over you. They will take you to the seaside and buy you candyfloss. You will be given a short-back-and-sides and a set of hand-me-down clothes.’ 

No bloody way is this going to happen. Every fibre of my being is screaming at me to run. Run, Dave! Just bloody run! But something is making me stay, although I have no idea what, maybe it was fear, maybe it was despair, more than likely it was Jesus, the number of people who had been praying for this moment unbeknown to me at the time was huge.  Somewhere deep in my subconscious I know that this is right. Why, then in the days leading up to this meeting when I was imagining every possible scenario did I not hear the words ‘I think it’s time you thought about a guide dog’? 

Someone’s made a mistake, that’s why. This bit is totally unscripted... and now is not a good time for ad-libbing. I feel so angry! I’ve never known anger like this. How dare she? This woman who’s never met me before, who knows nothing about me or my life. She’s trying to pin a label on me, a label that says ‘BLINDY’. Well, I know exactly where she can stick it and she’s damn lucky I don’t tell her. This will mark me out as disabled, the very term that started me running all those years ago. 

I’m on the verge of telling her all this, when I realise how futile it is. Tonight, as usual, this woman will mount her broomstick and fly off over the rooftops of Newcastle, back to her home and family. She’s just doing her job. This is simply routine to her. But that one simple statement has blown my whole world apart. How can anything ever be the same again? Witch, I thought. You bloody witch. 

I really need to get out of this office. I’ve successfully avoided this moment for over 40 years and now everything has turned to dust in a split second. 

I stuff my hands in my pockets so that I can be sure not to punch anyone or anything and I stomp off down the corridor, right out of the hospital, half out of my mind. My philosophy has worked for me so far and it’ll just have to work for me again: when things get too uncomfortable, just run! But running is a young man’s game and I’m starting to feel my age. Even as I jog along in my “Kicker” boots, I have to admit there is one very big fly in the ointment: I’ve promised my wife, Denise, that I’m going to face up to whatever’s going on with my sight, stop running and stand and face it and what is worse I can already sense Jesus hand in this and I know ultimately he will have his way but I’m never one to give in easily.

Thursday, January 24, 2019

What Is "Reasonable Adjustment" To Jesus

The Equalities Act time and again talks about "reasonable adjustment" so it got me thinking what that might mean to Jesus. 

In order to make these reasonable adjustments Jesus threw away the rule book, where there were obstacles to people experiencing the love of God he simply ignored or removed them. 

My favourite novelist, Morris West says "the church lays burdens on men that are simply too difficult for them to carry". Jesus says "Woe to you, teachers of the law and Pharisees, you hypocrites! You give a tenth of your spices – mint, dill and cumin. But you have neglected the more important matters of the law – justice, mercy and faithfulness. You should have practiced the latter, without neglecting the former".

Then there is this

"A man with leprosy came and knelt before him and said, “Lord, if you are willing, you can make me clean.”  Jesus reached out his hand and touched the man. “I am willing,” he said. “Be clean!” Immediately he was cleansed of his leprosy". 

According to Jewish law, if a person touched someone who was leprous, they would become unclean. Why did Jesus touch this leper?  Jesus realised that this man’s needs were emotional as well as physical.   This man mattered far more than rules and he needed touching! Jesus didn’t disobey rules to be rebellious but to demonstrate that love makes the rule redundant.

Wednesday, January 23, 2019

Jesus, The Oil On The Puddle

Have we created a church of escapism, a place where we sing songs that declare Jesus is my boyfriend, where the narrative is that everything was crap till we met Jesus and now life is wonderful? Do we long for the Disney does Jesus experience?

For many disabled people we simply reach a point where nothing is working as we thought it should, where (now stop reading now if easily offended but carry on if you want to be grown up about this) everything is quite simply fucked!

For lots of us this system of Disney does Jesus is either now failing or never even worked in the first place. 

We grew up with a system that tried to make sense of the crucifixion, a system that tried to use the same theology to make sense of disability when the truth is neither the crucifixion or disability can make sense. The crucifixion as described by Pete Rollins is "that which defies meaning". The crucifixion ruptures everything we think, for many people disability does the same thing.

Think of the Occupy movement, it came to say to the world, the system is broken, ruptured, the way we distribute wealth simply doesn't work. 

Disability theology is the Occupy movement of the church, it is saying to the church the system is broken, ruptured, grace is not being fairly distributed and like the crucifixion it's self we can not dream up a theology to pretty it up and wish it away, we have to face the pain of it head on and find a way to live with it's reality before there can ever be an Easter. 

When we stare at the Christ being crucified the temptation is to see all that horror and ask "where is God"? For many of us living in the shit of disability we are learning that rather than shouting "where is God"! We are slowly beginning to realise that he is here beside us in the shit. He's not a God that says there, there, I'll make it all better but a God that says, "I know". He sits with his people until the ambulance comes.

As Paul said "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord". 

Jesus sits with us in the mess in the middle of the road to show us just that. He does not come to fix it all but to help us carry the weight of our suffering, to rob it of it's sting and turn it in to something we can use for others.

When Jesus shouted from the cross "my God, my God why have you forsaken me" we are told the temple curtain ripped in half, the temple curtain kept the holy of holies hidden. when Jesus cried out that divide was broken and God and man were brought together, God spills out and mixes with us.

Have you ever watched oil float on the top of a puddle and seen how beautiful that is, that is where God is in our pain. 

Sunday, January 20, 2019

What Mean These Stones

All this talk of online church, I really don't see it as a new thing. 

Somewhere along the way the vision of the early church got lost. 

Whenever I read Acts I get the impression of a church family that lent on each other, a community so tightly linked that when one was unable to stand they were simply held up by those around them, not in some conscious way, rather imagine a row of people walking along with arms tightly linked, it is possible for one or two to actually take their feet off the ground and yet the whole line will still move forward together. 

In the case of the early church the person needing carrying varied from time to time sometimes you would hold someone else up, sometimes they would hold you.

I am a proud northerner and since a boy I have wondered the ancient land of Northumberland and in the church at Old Bewick, on Holy Island, at Aidan's field and Cuthbert's cave I somehow feel closer to God in these ancient ruined and sometimes neglected places, there I am able to place my head on Jesus chest and listen to his heartbeat. 

Often today it feels like the church has become so fragmented that those in that line unable to stand would simply be left to fall, a case of if you can't keep up then see ya!

I see in the work of Disability and Jesus and other emerging expressions of church, a real cry of the heart to restore that ancient path and become again that church that holds each other up. 

I see disabled and disenfranchised Christians striving to do this online. 

My friend John Skinner wrote this back in 1982 and I see it as a word of prophecy for where we are now. 

We are being called not to do something totally new but to rebuild the ancient paths using all the tools of our own age.

I see the rich heritage of Christianity in ancient Northumbria as having much to teach us here.

What Mean These Stones?
Land of my fathers,
how I long to return,
to touch thy earth,
and find again thy sacred paths,
well-walked with the Gospel of Peace,
veiled now in the shadow of mediocrity.

‘What mean these stones’
which beset thy coastline,
who in twisted agony cry out
in praise and supplication of Him
and the renewal of the faith
that bled to secure them there?

Yet we would walk again
thy sacred paths,
repair thy ancient ruins,
restore thy broken altars,
raise up the foundations
of many generations.

Hear this, you lands of the South
who hold many in captivity
by your empty words
and well-worn myths,
who neglect to see justice
for the poor, the widow,
the fatherless.

Look to the North -
for lo your Redeemer comes,
clothed in the poverty of the few
who dare to speak His name,
without vanity,
in a whisper,
lest the earth should tremble
Holy, Holy, Holy is the Lord.

Poor of Yahweh, arise,
take up the ancient mantle
which has awaited your day;
clothe yourselves within its humility,
for you have been set
as a stumbling block for many.

-John T. Skinner (1985)

Friday, January 18, 2019

Towards An Online Church

Back in 1982 I was a lowly seminarian at the Missionary Institute in Mill Hill. One of the many subjects we potential priests had to study was missiology. I still remember our lecturer, Fr Morro telling us this was about immersing ourselves in the culture of those we were going to engage with and being able to share the gospel with them in a language and cultural framework that they would be comfortable and familiar with, a language they would understand.

I never made it to final ordination but I often think of Fr Morro. He had spent time in my native north east and had assimilated himself in to the culture so he would speak to me in Geordie dialect, I can still hear his voice booming across the lecture hall at me in an accent that was half Italian and half Geordie. He used to shout "Lucas! Divn't be such a geet big sophist like"! It still makes me giggle now all these years later. 

Why is this relevant to what I'm saying now? Well, it was his passion to reach people in the place they were, with language they could understand, whilst doing his best to respect that person's culture. 

We now have a disabled community estranged from wider society, estranged from church and often from each other and the normal social circles. 

The dawn of the internet has been a Godsend to many of us in a very real sense, enabling us to form relationships and band together in ways that are easy in the virtual world but for us would simply often not be possible in the wider world. 

I believe there is now a thriving disabled culture brought about by the web, a culture that is simply not possible for us to have in the wider world. 

I believe when Christians do not give sufficient respect to the way disabled people rely on online services they are failing to understand the culture and as Fr Morro would have said "committing an act of great disrespect". 

I've been doing a lot of reading about online church these last few days and much of what I've found talks about the convenience it provides, you may not be free on a Sunday, you may have a cold or be on holiday etc etc. 

I would say they are choices and are not what disabled people are talking about. What disabled people are talking about is creating an environment which enables them to take part more fully, more equally, an approach that is inclusive, that enables them not just top be ministered to but to minister.

We are talking about not just buildings we can not access but churches where the liturgy uses language that is simply too complex, churches where bad theology on disability has caused much hurt, churches where disabled people have encountered negative attitudes. 

In an idea world I'd like to see churches overcome such issues but many disabled people have been waiting a lifetime for such progress and to many it seems but a distant dream. 

This people are beginning to band together and provide religious services online for each other that are accessible, easy to follow, supportive, creative and culturally relevant. 

Sadly I hear many mainstream church leaders dismiss some of this as unauthentic, not a real experience of church. I understand what they are trying to say but until we are able to offer such services within our churches it would seem hypocritical to be criticising the online efforts disabled people are making for themselves. 

I want to see mainstream churches engaging with this emerging movement, getting to grips with the culture and being part of what I truly believe to be a movement of the Holy Spirit. 

Wednesday, January 16, 2019

Through The Roof

After some days Jesus went back to the city of Capernaum.

Then news got around that He was home.  Soon many people gathered there. There was no more room, not even at the door. 
He spoke the Word of God to them. Four men came to Jesus carrying a man who could not move his body. These men could not get near Jesus because of so many people. 
They made a hole in the roof of the house over where Jesus stood. Then they let down the bed with the sick man on it.
When Jesus saw their faith, He said to the sick man, “Son, your sins are forgiven.”

Imagine this happened in one of our churches now. The PCC would be in an uproar, they would demand to know who was going to pay for the repairs.

Jesus makes no mention of the damage to the building, in fact he goes on to forgive the man his sins, surely that would include the damage he and his friends had caused to the building.

What matters to Jesus is that the man was able to meet with him and he greatly appreciated the trouble taken by those who made that possible and commends them for their faith. 

In light of my two previous posts I think enough said.

Tuesday, January 15, 2019

Can There Be A Sacramental 

Online Church?

Following on from my last blog I want to share with you where my thoughts are right now.

Please understand that these thoughts are entirely personal and do not represent my final word on anything, I merely wish to set them out as a way of starting a discussion. 

There have been many of us campaigning for greater access and inclusion for disabled people in the church and let me be very clear we are talking far more than just ramps and lifts but changes in culture, attitude and even liturgy. This campaigning has been going on since the dawn of DDA back in the mid 90s. 

Many colleagues, friends and fellow pilgrims constantly implore me to exorcise patience and tell me that the church takes a long time to change but quite frankly my question must be "how bloody long do you need"!

I will be 59yrs old this March and have been campaigning on such things most of my adult life. I have to tell you that so far I have seen far too little change. 

This lack of progress has seen many disabled pilgrims simply leave the church either because the church is incapable of meeting their needs or as is often the case, they have been so hurt and indeed damaged by their experience they just feel the only safe space for them is outside the church.

As a consequence many disabled people have become dependant on online experiences of church as often their only way of being connected with any form of church at all. 

I am alarmed by the way many in the wider church are speaking against online church as a in some way a lesser experience. 

Let me remind these critics that the church so far has abjectly failed disabled people. Then when disabled people seek to take matters in to their own hands, criticise them and tell them this is not "real" church. I feel I must say to you "you can not have it both ways". 

We have failed to reform the church in sufficient ways and left disabled people hurting and often disenfranchised. To then be critical of the way they try to find an expression of church that meets their needs is at best disingenuous. 

Is it not the case that "where two or three are gathered together" and if that way can only be online then so be it and that where disabled gather in that lies the sacramental?

Please join in the conversation with us on Twitter at @DisabilityJ

Friday, January 11, 2019

Is Our Church Broken?

In recent weeks and months I have read many articles and Tweets about the importance of church as a physical entity and whilst agreeing with the sentiment I have been left simply feeling sad and maybe even a little hurt.

I've been working and living in the disabled world for quite some time now. Way back in 1995 when I read the first Part of the Disability Discrimination Act I was hugely encouraged and felt we might be on the verge a huge cultural change, change that I felt sure would sweep not just through wider society but through the church too. In fact it was my hope and prayer at that time that the church would become the shining example of best practise that I could point to when talking to other organisations. 

The sentence from DDA that I found most inspiring at the time was that "we should aim to remove all barriers to access, be they physical or intellectual".

It feels to me now all these years on that what happened was the church to a large extent regarded these changes in law as "project fear" rather than a golden opportunity to embrace the disabled community in ways they had never done before. 

I often compare the situation to the one the church faced over child protection. We need to get real and be completely honest here, child protection did not become the focus that it is now out of an act of compassion, good conscience and concern. The church's first reaction was to try and burry the issue. It was only through high profile legal action that we began to take it seriously. 

Disabled people who have had issues attending church are very reluctant to make a fuss let alone take legal action and it is this very reticence which has led to them being largely ignored. 

Let's go back to that phrase "removal obstacles be they physical or intellectual". I have to admit that many churches have done much to improve physical access but what about those intellectual barriers? 

Many of us cling so tightly to tradition over liturgy and forms of worship that in themselves exclude people by their use of complex language. 

Often we will offer alternative services for those with special needs. Let me be clear, this is NOT that version of church that I talked about at the beginning of this article. Those people who insist online church is not a corporate experience have to see that alternative "special needs" services are also not corporate services. 

Until we the church are ready, willing and able to provide truly physically and intellectually experiences of church we can not then condemn those forced in to trying to have an online experience of church when our physical churches have failed them so badly.

Sunday, January 6, 2019

I have told this story many times but for whatever reason it is on my heart again tonight so here it is. 

Guide dogs are taught that a puddle is an obstacle which must be negotiated for the simple reason that it may ion fact not be a puddle but a hole.

So one winter day back in 2002 it was belting down with rain and I needed to go to the local shop. 

Now my guide dog Abbot knew the way to the store so well that all I needed to do was give him the command "store" and he would take me there without another word.

So on coming out of my front door I pulled up my hood against the rain and gave Abbot the command "store" and off we set.

The first part of the trip was perfectly normal but eventually we reached a junction where I knew that our normal route would be to take a right turn. Abbot decided to take a left and stepped of the kerb in that direction. I gave him the command to stop and took him back to the junction and gave him the command "right". With that he firmly sat down and flatly refused to move. No matter how many times I said "right" he just sat there.

So eventually I had to accept the he may be trying to tell me something and instead of giving him the command to go right I simply gave him the command "forward", a command that gave him the freedom to make the decision and once again he took a left.

As our journey progressed it slowly began to dawn on me what he was doing. He was guiding me to the store but he knew that if we'd taken our usual route there was part of the pavement that regularly flooded from the kerb to the building line. In the past this had resulted in us having to do what is known in guide dog circles as an "of kerb" manoeuvre. This would have meant to avoid the puddle Abbot would have had to step off the kerb in to the gutter to get around the puddle. This is a very dangerous manoeuvre and for any guide dog it represents the option of last resort. 

By going the route that Abbot had chosen we came to the store from the opposite side completely avoiding the puddle altogether. 

For me this story has become a great metaphor of my faith journey where I have spent far too long arguing with God about which way we should be going. 

What The Church Of England Is Failing To Grasp The first effective disability law began in the UK as early as 95 with the early s...