“People In Wheelchairs are Weird”

“People In Wheelchairs are Weird”

Yes, somebody actually said this. Horrendous isn’t it?

Let me add some context to the comment.

A young friend of mine uses a wheelchair. He’s a bright kid with a wicked sense of humour and was attending one of the children’s programmes last week. In his team was a little girl who asked a few questions about him and then announced, in surprised fashion, that he was actually quite ‘normal’. One of the leaders in the team gently asked why she was surprised by this. Her answer was worrying: “My mum says people in wheelchairs are weird. But he isn’t”.

Amazing Stories About Some Amazing Young People

I’ve been thinking through what I’m going to say at the new “Neos” conference - a conference designed to "Equip all for family, youth + children's ministry". 

Aside from some sessions in the Additional Needs Alliance stream, I’ve been asked to do a 7 minute “Quick Insight” on additional needs.

What can I say in 7 minutes? 

What I want to do is to be positive!

Then I felt a blog post ‘coming on’. It wrote itself whilst I was in the bath…..! (I do some of my best thinking whilst in the bath!)

Enjoy the Miracles, But Don't Forget Your Communities

It does appear that given the choice of a seminar on signs and wonders and a seminar on making sure those with disabilities can access church, the majority will opt for the seminar on signs and wonders. 

That seminar is usually full to overflowing.

I find this slightly disturbing.

There’s been a lot of talk about healing on social media, both from Wales and from a couple of recent festivals - that’s wonderful!

But I still can’t helping feeling as though the finger of blame is pointing at those who are not healed - “those people have been healed, why not you?”

And now I hear of people getting into their cars and chasing the new welsh revival, much like they did with a well known “revival” in America in the last couple of years.

This gives me another question: Would as many folk do the same to learn how to make sure everyone - including those with disabilities - can access their church? Would they do that to learn how to include and teach children? 

The figures for those attending these sort of conferences speak for themselves…… No.

Don’t misunderstand me here - I believe in healing. I believe in Biblical signs and wonders. But I don’t believe it should be at the expense of caring for our communities. 

I believe there is the same amount of wonder in seeing a child with a profound disability worship as there is in witnessing a healing…. And I have witnessed both.

So here I am, a very quiet voice in the world of the church, putting my hand up and saying “Excuse me please! Enjoy the miracles, but don’t forget to care. Don’t forget that not everyone will be healed and will still need to access the church. And whatever you do - don’t forget the children.” 

Perfectionism vs Caring Community

We're in the 21st Century, and in 'The Church', families who have children with additional needs are still being asked to leave because the church can't cope with them. If they are not asked to leave, they are left to struggle.

That probably sounds a bit harsh, but sadly it is true.

Let's look at how the meeting of Church and the 21st century is affecting those with disabilities:

A couple of years ago churches didn't think anything of having sound 'dead spots' in their main meeting room - which was a huge help to those who can't cope with sensory overload. But now, with the dawn of more advanced sound systems these 'dead spots' are frowned upon in the pursuit of a concert style sound (That is often louder than actually needed). If any one with autism, tinnitus or other conditions that don't cope with surround sound ask for a dead spot area, they are frowned upon because "It might ruin the experience for others". 

The fact that those 'others' don't notice a problem is incidental, as is the possibility that a young person with an Autistic Spectrum Disorder/Aspergers has been caused to run crying into the toilet to escape the sound.

In an attempt to make things visually more 'exciting' we have moving back grounds on screens where the song words are, making it impossible for many to read the words.

In an attempt to make worship 'flow' we don't announce which song is coming next meaning some with specific disabilities can't find the next song in the large print song book until it's nearly finished….. that's if there is a large print song book!

Caring for others, including those with disabilities is getting more and more lost in a sea of  so called improvements that make us more like the world but make our communities and our meetings less accessible. The need for perfection comes ahead of the need of the people. 

And that's just the tip of the iceberg - for a person with a disability or additional need, whether they be an adult or child, Church is a difficult place to be and often a scary place.

It's because of this that I write about disability and the church. It's the reason that I shout and scream (and metaphorically stamp my feet) on Twitter and Facebook 

God put the idea that church should be accessible on my heart when I was 14 and volunteering on a camp for children who have disabilities…. a long time before I became disabled by some genetic quirk of muscles and neurology. I didn't find out that I had the conditions I have until I was 19 and training to be a nurse.

Many people think I campaign because I am disabled…. but I've only been using a wheelchair for a small number of years. I say this because some have levelled the accusation at me that I'm only campaigning to make life better for me. This is most definitely not true.

I campaign because I want everyone to be able to access the Gospel - no matter what form that access has to be. I am most passionate about children with disabilities and additional needs, but I also campaign for adults. It is pure co-incidence that I am now experiencing what I have been campaigning about.

I have found that if I give a talk or train people when sitting down - especially in a wheelchair, people don't take me as seriously as when I stand to speak….. why is that? Does my wheelchair take my brain away? This is why I plan pain medications to make sure I can stand - which surprised a few people at the last conference I spoke at. It wasn't the standing to speak that surprised them, but the fact that they later saw me in a wheelchair!

There are so many campaigns out there - lots of them wonderful and valid campaigns. They often get a great following. But I am left slightly bewildered by the fact that saving badgers gets more support than disability discrimination awareness!

In all the hard work and heart and soul I put into this campaigning, my 'head' tells me to give up, because it is obvious that majority of 'The Church' really couldn't give a stuff about it. But my heart tells me to keep going, because every so often it makes a small difference to one child or their family - a small difference in our eyes, but a huge difference in theirs.

What I do isn't about me - it's about kids and their families, it's about all those people who need to hear about the Love of Jesus but can't. It's about the care that Jesus tells us to have.

If Jesus was visiting some our churches, I don't think He would be in the main meeting….. I believe He would be in the toilet comforting that young person who couldn't cope with the noise.

Additional Needs Alliance

Last weekend we had our first “Additional Needs Alliance” Forum.

It was a great success! Just over 50 people of like mind together in one room. 

The speakers were: Mark Arnold from Urban Saints. Me (Kay Morgan-Gurr) from Children Worldwide, and Paul Nash of the Paediatric Chaplaincy Network. There were others who came to help facilitate different areas of discussion.

The forum fed into the Children and Family Ministry conference (Hand in Hand), with the Friday night plenary being about “A Vision for Inclusivity” and an additional needs work seminar stream running throughout the weekend. This was also a great success.

What is the 'Additional Needs Alliance'?

The Alliance isn’t another organisation out to ‘get at’ churches. It’s primary aim isn’t campaigning but rather getting alongside people and churches to raise awareness in the area of working with children who have additional needs and disabilities. Ok, so some might see what we do as campaigning…..but that's just a side effect of our passion!

What we are aiming to do is start a conversation about how we care for children and families who are affected by the huge breadth of additional needs and disabilities out there. To raise a vision beyond just ‘catering’ for these children to creating a place where they and their families feel they belong and are wanted. We want churches to say yes to families who are so used to hearing ‘no’ when they ask if a church can cope with their child’s needs.

One of the things we have looked at is the vision for the spiritual walk of these children, their faith journey with God. We know they can have relationship with God - it may challenge how we view and understand faith, but we know that God understands and the power of the Holy Spirit works beyond our understanding. We believe the faith journey of these children should be a fundamental part of our vision.

1 in 5 children in this country having some form of additional need or disability, and it is obvious this number is not reflected in our churches.

There are small pockets of excellent work out there, usually stemming from people already in our church communities having children with additional needs. It’s a great place to start - but we can also see a much bigger missional picture.

Many people, when looking at this area often only see those children with ADHD, Autistic Spectrum disorders and dyspraxia, and although these are important, those with other conditions and disabilities are often forgotten. We want to raise awareness in ALL areas of additional needs and disabilities and make sure our churches are open and accessible. A safe place where they can belong.

What can you do?

You can join the conversation and spread it - Gossip this stuff around - Kids with additional needs and disabilities matter!

We have a facebook group  a twitter account (@A_N_All) and an email address (On the flier to stop spammers getting hold of it!)

We are planning more forums - join the facebook group or contact us for more dates.

Link to a copy of the flier below here

*This is a Children Matter! initiative. Currently run by an Urban Saints and Children Worldwide partnership

Euthanasia for Children

Last December, history was made in Brussels.

Twin brothers opted to be euthanized together.

The two men, 45, from the Antwerp region were both born deaf and sought euthanasia after finding that they would also soon go blind.

It’s not just the fact that they were twins. The Telegraph said that “The case is unusual because neither of the men was terminally ill nor suffering physical pain.”

The paper then went on to report that  “Just days after the twins were killed by doctors, Belgium's ruling Socialists tabled a new legal amendment that will allow the euthanasia of children and Alzheimer's sufferers.” (You can read the full article here)

The rules in Brussels currently state that euthanasia can go ahead if “the person wishing to end their life is able to make their wishes clear and a doctor judges that they are suffering unbearable pain”.

After this news, there will be many Christians reaching for their pens to write to their MEPs. That’s good. But can I put something else to you.

If we as Christians are going to complain and attempt to make euthanasia illegal - especially when it comes to children with disabilities, we also need to look at helping to provide a viable alternative - or at least try to understand why people find this to be the only alternative to living with illness and pain.

These Issues Are Not Always Cut And Dried

Look at this from the point of view of a young person with disabilities. 

This is what they often see ahead of them:

• They see adults with disabilities having all financial help withdrawn because of cuts in disability allowances feeling that the only way out is suicide.
• They see older friends struggling with inadequate provision of care, where the carer due to come and help them doesn’t even turn up, or if they do turn up, barely having time to help get them up. 
• They see friends who have opted for supported living accommodation being abused or not adequately cared for.
• Some can’t see themselves having an amazing future, getting married or having kids of their own. 
• Some can’t see themselves getting jobs - especially since much of the support that used to be supplied to help them in the work place has been removed in this latest round of cuts.
• They read comments from high profile people making comments about “aborting babies with defects”.
• If they know they are going to need care into adulthood, the prospects can look bleak. They don’t see that for some it works out - because for the majority it doesn’t.

All of this can compound the feeling that they are a drain on society and have no right to be alive.

The Natural Next Step?

Can you see why they might take up the option of euthanasia? Surely it's the next logical step?

In health care, children are already allowed to make informed choices about their own care - and that is good. Why is it so unbelievable that the natural next step would be opting for euthanasia?

The Reality

Let’s look at it from another angle. 

For some babies who are born with such severe issues that they cannot live for many weeks without invasive care, and then in considerable pain, it is not unusual for only palliative care to be given. 

This decision is reached along side parents and isn’t the default position on care. When is it decided to treat them, the baby only usually lives a matter of weeks longer and often in a lot of discomfort. I have been a nurse caring for babies in both situations and both are agony for the parents.

If you want to take your campaigning to the extreme - you have to consider these situations too. What support can we give in both cases?

As a nurse I looked after a youngster from birth to death. Just over a year. Her issues were severe and her parents decided they couldn’t cope and put her up for adoption. She never got out of hospital. She was assigned foster parents, but fostering a child who is permanently in hospital never works.

Her life was all about keeping her alive at all costs, even though it was agony for her. Eventually - after much talk, it was decided to give only basic care (Nutrition and cuddles). Her first smile was in my arms as she passed peacefully away, free of needles and uncomfortable plastic oxygen head boxes. Was that wrong? If you think it was - please go and hold a child in obvious pain 24/7 because we insist on keeping them alive….just because we can. Can you, as a Christian provide the extra support needed if this course of action wasn't taken?

I am against euthanasia, but if if you are going to campaign on the right to life….. We need to consider these things too. 

Campaign by all means, but be careful. 

Consider all the options and remember - we also need to provide an alternative. Our churches need to be up to the task of helping practically and providing the much needed pastoral support too.

Horror Statements

A UKIP candidate thinks kids with additional needs should be aborted (http://bbc.in/ViUfBl), and a mensa member  referred to those with an IQ lower than 60 as ‘carrots’ on the BBC (http://bit.ly/VUmpsY).

Most of us gasped in horror at both of these statements - especially those of us who have family and/or friends with additional needs and disabilities.

It’s only right we should gasp in horror at these things!

But I have a provocative question for the Church and Christians in general - are we horrified enough? Or by our passivity in dealing with the subject of additional needs and disability, are we guilty of causing the same distress?

There is a wealth of info and training materials out there on making a difference for those who have additional needs and disabilities - especially in children’s work, and some are using them, and attending training events - but not enough. Some churches are engaging with these children and their families, but again, not enough. 

I speak at many conferences and training events. If we put on a seminar about puppets - the room is packed to over flowing. Put a seminar on about additional needs and we get a handful of folk (Strange when you look at the statistics of how many children have additional needs!) The only seminar that’s even less well attended is the one on prayer - which also says a lot!

There is a Biblical mandate to care for the vulnerable. We make lots of noise about caring for our communities, but if we can’t care properly for those who have additional needs and disabilities, we’re only caring for part of our communities. 

We also have a Biblical mandate to evangelize, but children with additional needs and disabilities are often overlooked in this too.

It’s a subject many in our churches prefer to skip over - and I for one would like that to change.

I’ve spent most of my (long) adult life wanting to change how the Church in this country cares for those with additional needs and disabilities - have you? The fact that you are reading this tells me you are of a similar mind!

Would you like to join a conversation on this? To create a vision for change?

Yes?

Well that’s the whole point of the forum we are holding on Feb 1^st in Eastbourne, which will be the start a longer, bigger conversation about this. But this won’t just be a talking shop - this will be a group of people with a passion and a vision for all these children are and can be. From this, I pray, will come change.

There will be further forums in different areas of the country, and an on-line forum to share ideas and work on a way forward.

This won’t be ‘my’ group - this will be a team effort, and the team will consist of anyone who joins.

Please - come join the conversation.

Idiots Guide to making church accessible….Worship

When we talk about accessibility, the obvious things are wheelchair ramps and lifts, but there is so much more!!

By accessible we mean more than physical access to a building:

Can those attending your church access worship? The teaching? The coffee? Do they feel guilty because of terminology?  That’s just a few of the things we can think about when we look at making church accessible. Is your website accessible too? Is there information about how those with disabilities can access what you do?

In this post, I’m only going to look at one aspect of accessibility. I may cover other areas later.

Let’s look at ‘sung worship’:

Most will think this is just down to being able to read the words on the screen. Yes, there are issues there, but there are others too.

Do you provide large/giant print words? 

Think about the following:

• Are they large enough?
• Are they in a sans serif font? Serif fonts are difficult to read for those with visual problems and also for those who have dyslexia
• Have you used italics? It’s best not to - they aren’t as clear to read (Yes I know I’ve used them here!)
• If the song/hymn covers two pages, have you put the chorus on both pages? Having to turn the page back and find your place on the page again is difficult.
• Are they the ‘right’ words? Some hymns have variations, and some have the same title as another song. If the large print words are prepared by a different person to the one doing the presentation slides, sometimes the wrong song or words make their way to the large print folder!
• Is the page ‘clean’ or does it have the look of a poor photo copy with bits and blobs over it or fuzzy words? Having these things on the page can make them difficult to read.

How do you introduce worship?

Think about the following:

Are the first words something along the lines of “We’ll all stand to sing….”. Well, actually, some of your congregation may not be able to, and often find phrases like that unhelpful. Many of my disabled friends really appreciate something along the lines of “Stand if you’re able”, and if you’re the sort of church who “remain standing for the next song” it’s helpful to say “If you would like to remain standing….”  Inviting people to worship with suggestions that they may like to stand is much more helpful.

Announcing the next song/hymn is also helpful, or else those unable to see the screens will find it just as the song is finishing.

Do you have a fixed place where those who use wheelchairs or have poor mobility have to sit, or do you give choice?

Think about the following:

• If those who need to be seated for worship and use screens to access song words, be aware of those standing in front of them - they won’t be able to see past them. 
• If they opt to sit at the end of a row so they can see screens whilst seated, and you are from a church where people move around and raise hands in worship - look out for those who move into the aisle and don’t realise they are blocking the view of those who are seated.
• For some wheelchair users or those with mobility difficulties, sitting at the front isn’t always the solution, as looking up at a screen gives neck pain. (Plus, for those with complex syndromes or hidden disabilities the brightness of the screen can also be a problem)
• Be sensitive to those for whom volume means pain - not just to the ears, but also the base notes pounding through their body. Give advise as to the best place to sit if you know this could be a problem.

There is also specific advice for those who have autistic spectrum disorders and worship, which really needs to be a separate post. Do ask the person what is best if you have someone who is finding access to sung worship difficult due to autism. You could also look at the Oxford diocese booklet "Welcoming those with Autism and Asperger Syndrome in our Churches and Communities" downloadable here

As an aside:

If you put the songs being sung that day in a folder for those who can’t see the screens, how about putting the bible reading and responsive prayers in there too?

The Story Behind the Forum

On 1^st February there will be a forum for any one who works with, or has an interest in, children who have additional needs and their families. (Details Here - Book Here)

Anyone who knows me knows I am passionate about facilitating children who have additional needs.  I want to make a difference. I want things to change. The thing is - I’m getting impatient and I want things to change more quickly.

I want people to catch the vision. Not a vision for tackling a problem but a vision for facilitating children who have additional needs to find faith, to grow in faith and be all that God has created them to be. 

And I’m impatient for more people to catch that vision and spread it.

I have story upon story of faith from children who have additional needs, I have stories of parents in tears because of the gratitude they feel when people ‘get it’. I have the written vision of a parent who wants their child who is severely autistic to walk with God and serve Him - a powerful missive!

Yep - I’m passionate about this….

It all started when I was 14 years old and helped on a camp for children who had physical disabilities. It was run by the church I attended at the time and children were turning to God. But - it was difficult to link them to churches local to them as those churches just couldn’t cope.

It also occurred to me at that time that when you looked at how many children had an additional need in our communities, it was obvious that this was not reflected in our churches and ‘The Church’ was poorer as a result. It is still the same today over 30 years later.

From that point on I knew what I had to do, I trained as a nurse and specialised in caring for children who have additional needs of every variety. There was an urgency to what we were doing on the camp I helped on as a teenager, as many of the children had a very short life span. Later, as a nurse I had the ‘privilege’ of being with some of them as they went to meet their creator - sad for me, but what was more troubling was those children we just couldn’t reach in time. 

I’ve held too many dying children for me to just sit back and do nothing.

21 years ago…. God called me to be a Children’s evangelist, and He left in my heart that burning desire to do something.

Whilst there are pockets of excellent work with these children and lots of organisations doing bits and pieces, it still isn’t enough. I still hear stories of children and their families turned away from churches, I still hear of evangelism policies and plans that don’t include intentional outreach to children with additional needs. I hear of schools work set up, but no one even thinking of going into the ‘special’ schools. I still hear of children treated as a problem rather that God’s creation. These children are in our communities, are in our schools and have families who are often in crisis with no help in sight.

I want that to change. 

This year the damn finally burst. At the Children Matter forum in May I poured my heart out about this. I wanted to pull together every one who would listen so we could do something. I want the best for these children!

Are you with me?

Well that’s why we are organising this forum. We want to start a conversation that will begin a process of change, not just for the children but for their families too. Yes, there are people out there doing some great stuff but we need to be talking together and working together to achieve even more…..to spread the word and make a bigger impact.

When Children Don't Want Jesus In Their Heart Any More

We adults have our own view of all things theological, we like to get it sorted in our heads and pass on what we think to the children. Sometimes we’ve wrestled with it ourselves, and sometimes we have just accepted what the previous generation told us - because we have never been required to test it for ourselves. Sometimes we forget to let the children wrestle with it for themselves, to ask questions - and not be afraid to ask them.

Many people are shocked when children question, as though we think they are rejecting all the wisdom we have passed on because of their questioning. But questioning is healthy. It helps a child to own their faith and grow in it as they journey, rather than getting to university and thinking “So why do I believe this….?”

I’ve written on the subject of how children view suffering and God before, and had a lot of theology thrown at me as a result. There were lot’s of different views, some of the readers rather surprised that I needed this subject explaining to me and set about trying to ‘correct’ my theology. I didn’t need it explaining or correcting - I never said I did. What I did question was how we help children who are suffering, as I felt they needed it explaining rather better than we do! I felt we should’t be saying  “this is the answer - lump it”, but rather - “these are different ways of looking at it” and giving space and permission for anger and grief, a place for asking questions of both us and God.

Last time I wrote on this I talked of how I have had angry conversations with God about things and I got responses from readers along the lines of “Until I accept that these things are God will...then…. etc, etc” I was cross with these responses - and I have a firm faith. So just think how a questioning child would feel with this response?!

I have seen the faith of too many children smashed to pieces because of poorly thought through theology pressed on the child when they are not in a place to hear it. To tell a child who has just lost their mother that they should be happy for their mother - because they are in heaven is crass beyond words….. but I’ve heard it said! The same child was told within days of losing her, that their mother’s death was God’s will. Ok - that might be your theology, but please don’t say it to a child who’s mother died in a car crash days before.

During my first year as a children’s evangelist I had a 7 year old girl in a small group. She was a Christian, but struggling with coming to terms with some horrible stuff happening in her life. I will never forget her screaming at me, whilst grabbing at her chest repeatedly; “I don’t want God in my heart any more, I hate Him, I hate Him, He doesn’t work”

Sometimes there comes a time when we have to stop trying to explain God’s reasoning (Only God knows that!) and just hold the child and cry with them….. And not be afraid to admit that we just don’t understand. That’s what I did.

After I have cried with them and allowed them to shout - I don’t try to explain God…. Or make excuses for Him - that’s not for me to do. What I can do is help them to hold on to God in the middle of their crisis. I will talk theology (What God thinks about it) when they are ready - and want to talk about.

What I want for them is to find God in the depths of the pain, to give them the resources to eventually allow God to redeem the situation, to hold them and to comfort them. Before we can say anything else, they need to know more than anything that God still loves them - even in the depths of their despair and angry questions - they are within that love. 

Think of the song ‘Father God I Wonder’. I love that song - but have you ever tried to sing the chorus from the middle of a deep crisis? When the last thing we want to do is ‘Sing God’s praises’? It’s difficult to do - especially when told that this is “God’s Will”. But it seems we expect kids to happily do this.

With older kids, and this song in mind I have sometimes talked through the occasions I have sung it, not wanting to praise God, and yet at the same time - determined to praise Him, just because I am still aware of God’s love. The gritted teeth, hands clenched, tears streaming down your cheeks version where you sing “I WILL sing your praises”. This is usually called a ‘sacrifice of praise’ and it’s not easy, but it is often the first step to allowing God into the grief and the pain.

It’s good to share your story - not to say that you understand, because you can’t…. They are not you. Tell it to say “You are not alone, you can talk to me”.

I am not a professional counselor - but like many of those who work with children, I am often the first contact for a child in crisis. I will always suggest counseling to parents, but I am also aware that my initial response to the child is key to gaining their trust for the future.

You’ve probably guessed where my theology on suffering sits :o) Your theology may sit in a different place, and that’s fine by me. 

The purpose of this blog post is not to compare theology or war scars - it’s to fight for the faith of the children I love and serve.

Beyond the Paralympics

Over the next couple of weeks we will all be ooo-ing and aaah-ing over the achievements of those taking part in the Paralympics. It’s all nice and warm and fuzzy - and why should’t it be?! This is something to be celebrated, and I for one will be watching as much as my work load allows.

There is work going on amongst para-church organisations to use the Paralympics to raise awareness of disability in churches - going beyond the ramp and a warm welcome, but actually including those with disabilities and additional needs fully in the life of the church.

But what happens when it’s all over? For a while, we will be inspired. To quote the Olympic catch phrase, a generation will have been inspired too. But for how long?

Here’s some things that may take this inspiration beyond the Paralympics:

• The Disability Sunday pack - written to be used during the event, but easily used on any day. It may fit better at a different time of year for your church, or you may have only just found out about it, but please - use it. 
• The Enabling Church study book - ideal for churches who wanted to take a fresh look at what the Bible has to say about disability and become equipped to be more inclusive. 
• I know of another book currently going through the editorial process - one that I have had the privilege of writing one of the chapters for. I’ll give you more information when I have it. 
• Have a look at the Livability page "Your Church And Disability" 

Also:

• Scripture Union do ‘Additional Needs’ camps (The link takes you to the camps just gone - but you can request a brochure for next year) 
• My own organisation (Children Worldwide) will be doing a weekend retreat for families who have a child with complex medical needs and mobility difficulties. See the page about "Latitude" 
• Both Urban Saints and Children Worldwide have people who can run a training event for churches who want to know more about children with additional needs and disabilities. 
• Churches for All have contacts who would be happy to come a do training on any aspect of disability for your church. Have a good look around this new look web site 
• If you want to see a good example of disability information on a website, have a look at the National Space Centre in Leicester - the info is helpful and clear and the centre itself is completely accessible and welcoming. Let’s get the churches in the UK doing this even better! 

And books for Kids:

• Some fantastic Books by Victoria Beech and the Paediatric Chaplaincy Network (Scroll down the page when you get there). Tackling subjects such as life limiting illness, hospital stays and the death of a sibling.
• And one little gem I've just found - Rebecca Elliott: "Just Because"

Are We Inspiring a Generation?

For the first time ever, the catch phrase for the Olympics and the Paralympics is the same: “Inspire a Generation”. It’s a good phrase!

All over the world, the younger generation are being inspired by positive role models who are competing in the Olympics, and the same will happen when it comes to the Paralympics. The torch is being passed on to the next generation. (I loved that bit of the opening ceremony!)

I hope that all of this rising generation will be inspired by both events. That not just disabled youngsters but also able bodied youngsters will be inspired by the Paralympics.

But what about us as a ‘Church’? 

Are we inspiring a generation? Any generation?

For all the children and young people in our churches, disabled or not, additional need or not, are we inspiring them to go forward in their faith? Are we giving good role models for them? Are we inspiring an older generation of people who have disabilities to go forward with God? Do we even have a vision for this?

How do we see those with disabilities and additional needs and are they even on the Church’s radar? Sadly, for most churches they are not. When you look at the figures of how many people there are with disabilities in our communities, it is easy to see that our churches do not reflect those figures….. And it’s not because they all get healed!

When the world is watching the abilities of the Paralympians rather than their disabilities and applauding their achievements, how is ‘the Church’ viewing those with disabilities in their communities? Are they seen as people who can be giants of faith, able to serve as well as receive? Or is it a case of a perplexed “what disabled people….?”

I’ve been speaking out for children who have disabilities and additional needs for over 20 years, and in the area of children - inspired by a generation of children’s workers, things are happening. More and more churches are trying to include youngsters with disabilities and additional needs. For these people I am extremely grateful -  they truly are inspiring a generation of children with disabilities and additional needs and building them up in their faith. But what happens as our children grow up? Do we have the same heart and vision in our youth and adult programmes?

Maybe as these children grow, the Church will sit up and realise that something needs to be done, to see that working with these young people and adults is a valid ministry. I believe that our churches need to be ready to welcome those with disabilities rather than being surprised when they come. I want those with leadership responsibilities to look at this issue properly rather than skip over info and posts about disability.... as seems to be the norm! (Apologies for my outspoken moment there - but that is how it feels to many people who have disabilities and try to access our churches)

Why not raise awareness about this in our churches now? With the Paralympics, the idea of disability will be high in people’s minds. And this is the thinking behind moving “Disability Sunday” to just after the event.

Have a look here for a ‘Disability Sunday’ pack, and look at inspiring your church to be a Gold medal holder for accessibility.... on all levels.... in all generations.

Recruiting to a vision

Special Needs, additional needs, disabilities, difficulties - what ever you call it, the issue in a lot of our churches is the same, and many children and youth workers up and down the country are struggling with it. 

We see the problem, and all the surrounding issues and feel that gut response of “How on earth am I going to cope with that?” All the work of doing week by week youth ministry is hard enough to cope with without this!

There is often an expectation for our volunteers to deliver a level of inclusion that even the most experienced specialist in the area of additional needs would struggle to do outside the church setting, and when it doesn’t work we get disillusioned. 

To practice a good level of inclusion is a week by week process, and how it works out in practice will be different for every child. Some will settle in with all the other kids, some won’t. Some will need a mix of time in the group and time alone. Whatever we plan could change at a moments notice and we need lots of flexibility.

To agree to help a child with learning difficulties in our Sunday children’s work at age five is one thing, but to transition them through our children and youth work and into adult worship is something completely different. It is a long term commitment that needs determination, love, wisdom and vision, and is a decision not to be taken lightly - it will be hard work.

Doesn’t that sound awful! 

Ok, let’s begin with another way of looking at this? Let’s move our eyes away from the problem we perceive and onto the gift we can give. On to a vision of what God can do, not only in the lives of the children and young people, but in our own lives as we seek to serve them. 

Don’t misunderstand me here - we need to look at practicalities, how to make the provision we give work. We need to make sure our volunteers are trained and ready too. But if our starting point is the problem and not God, where is our vision coming from? God needs to be central in the vision - for all we do, and especially in the work we do with these precious youngsters

You will no doubt be familiar the following statement: “Mum has asked if Fred can come to club…. Have you seen Fred?! He can’t sit still, he hates the noise and he’s totally disruptive. He’s always putting the other kids off! We need a one to one for him”. After that comes the conversation with a possible one to one buddy: “We have this child who is a problem. He’s totally disruptive in his class. Would you mind helping us out?”  This is what I call “recruiting to a problem”.

Wouldn’t it be better to say “We have a young person who is struggling with club at the moment. We want him to have a positive experience and want to find ways of helping him connect with God and be all that God wants him to be. Would you help us?” This is “recruiting to a vision”

What do I see when I look at a child with autism? Or severe ADHD? Do I see a problem to be solved or a child, made by God, who deserves to be loved and nurtured? Do I have a passion for seeing God work in their lives?

One of our Trustees was telling the story of a friend last week, who got to the point of saying to God “I don’t know what to do!” And God responded with “I know - watch me!”

It was different circumstances, but the lesson is the same.

Even before we start planning - should we be saying “Lord I don’t know what to do! Guide me!”

We need a vision and a passion for these children. It won’t be one vision and one plan for life - it will change and will be constantly moving with the young person. It isn’t a one size fits all - it’s a different long term vision and a different plan for every young person and every family.

The over-riding and central vision will be the same - That they would know and love God, that they would be all that God wants them to be, that they would be filled with the Spirit and serve God with all their heart, mind and soul….. I could go on! But there will be things God lays on your heart for a specific child that goes beyond the basic vision you have for all the kids.

May your vision and your passion increase as you continue to serve God and the youngsters in your care.

Some tips:

Don’t do it yourself if you are the key youth worker - appoint someone whose sole responsibility is ‘Inclusion’. Someone with experience, who is passionate…. and has a vision.

Recruit team to a vision, not a problem.

Be realistic about what you can achieve

Work with the young persons family to achieve the best for them

Remember that what works one week, might not work next week

He’s Going To Die Anyway…..

It's a harsh title for a blog I know - but that's what this post boils down to - and it's possibly what made you click on a link to read it.

It's a post written direct from the heart, because I see kids with special needs and disabilities as beautiful, incredible and very precious. I know God sees them in the same way.

I have some questions: 

Who can Judge the quality of life of a child? 

Who has the right to say which child deserves to live and which should be allowed to die? 

And - just what is quality of life? 

Because a child cannot do a combination of things other children can do - does that mean they don’t have a quality of life?

In my mind - no one has the right to judge, especially when that assumption is based on what is perceived to be a ‘normal’ life.  And yet… people do judge on all these matters.

When I was nursing I came up against this a lot, but having been out of that world for some time I have been shocked recently by the attitude of some doctors to my friend’s young disabled child.

This little one has many medical problems and disabilities that I won’t go into, as I don’t want people to be able to identify mum and child. 

This child has a great quality of life! Having also been diagnosed as having severe learning difficulties on top of everything else, it has become clear that this particular diagnosis was totally wrong. But mum found it difficult to have that diagnosis removed so they could get appropriate schooling, sadly this diagnosis is sometimes still believed at the hospital, even though it is so obviously wrong!

This is a child, who on spotting mum was upset, communicated the fact that he had written a song. The words were “Trust Trust Jesus”, repeated. Amazing words - done in an age appropriate way, showing faith and concern.

This little boy is loving, has friends (and misses them when in hospital), is VERY cheeky, has a wonderful sense of humour, can communicate and can understand the world around him. This child is greatly loved by all who have the pleasure of meeting him.

And yet…. The doctors around him question his quality of life, and then question how far they should intervene because of this. One doctor said it would all end in tears and that the last couple of good years have been ‘a fluke’.  On another medical team, the attitude seems slightly different with suggestions of what they can do to alleviate the problems he is currently experiencing, but at the same time questioning the quality of life he has as a result of this particular problem. 

My friend is looking at ways to show that her child has a great quality of life - possibly with a diary with photos and comments from friends, but why should she have to do this?

She know’s that her child’s life is going to be short, and obviously that is a source of great sadness. But she and all her friends want to see the doctors fight to make that short life the best ever, not back away because they question that quality of life.

Let me make it clear that the doctors are doing nothing wrong! But… It would be good if they could occasionally see beyond the patient and the medical conditions -  and see the child.

I’ll balance my comments by saying that there are times when you know it is time to allow a child to ‘slip away’. As a nurse I have sat and held many children who have been in extreme pain, knowing the only level of pain killers that would work would kill them. I have held them and prayed over them, and then asked God to intervene. But even then, with a child in extreme pain, who could not speak, and had little awareness of the world around them - it was not my role to judge. I would often ask consultants to treat a child with dignity and respect in the way they chose to medically intervene, and also question eeking out the child’s life for another 2 pain filled weeks, just because they could. So yes - there are times when you have to weigh life and pain, but always alongside the parent’s wishes. 

For my friend’s child though - this is not the case. He has a great life, and he has the right to have appropriate medical intervention, based on who he is…. a wonderful human being.  It should’t be dependent on the assumptions of that child’s quality of life. 

It Takes A Whole Church to Raise A Child

Yesterday I attended the Evangelical Alliance's council meeting, along with various others who have an interest or expertise in children's ministry. There were many excellent speakers too, who spoke with passion about their given subjects. Together, we were looking at the subject "It Takes A Whole Church to Raise A Child". (Do read Krish Kandiah's excellent article in Youthwork Magazine here, or get a copy of Christianity Magazine) If you are a twitterer, search for the hash tag #wholechurch where you should find lots of quotes from the speakers. Although, if my fellow attendees were like me, they were too busy listening and discussing to tweet, and not wanting to miss anything!

This is not a summary of the whole day - that would take a lot of blog entries! This is just about the part I had the privilege to play in the day.

As part of this, I was asked to prepare a 5 minute slot answering the question "Is Church Toxic to Our Children's Faith". Before any one complains that five minutes wasn't enough, I need to explain that this five minutes was to set the scene for further discussion - it wasn't a talk in it's own right as that wasn't what was needed. (It was also a good discipline for me to hone what I said and make every word count!)

As promised, this is a summary of what I said (Not word for word!):

Is church toxic to a child's faith? It was to people in my family, and that toxicity has gone on to affect them for many years. But I feel at this point, I should point that not every church is toxic to a child's faith.

Yes I do believe church can sometimes be toxic to children's faith!

Toxicity is often due to a combination of substances rather than just one, and in much the same way, I believe the problem of church being toxic to a child's faith is down to a combination of factors - but it's not always the same mix.

There will be a different recipe of toxins for each individual child - something that affects one child may not affect another and vice versa. But within that mix, that recipe, I believe there are a five constants - things that will affect the majority of children. 

They are:

• A lack of acceptance of and grace towards children in being fully part of the church, now, this minute. (It's not a case of waiting until children are 18)
• A lack of opportunities for children to serve
• A lack of a safe space for children to make mistakes and learn from them - as they serve, as they take their place in the church, whilst still being children (and we have to remember that they are still children and will be child like!)
• A lack of vision - for both the child and the children's work.... Or even the wrong vision (how we see it/how we wanted it to be for us), rather than allowing God to put His vision into the work we do.
• A lack of solid theology, taught in a child friendly way that takes into account the age and stage of the child;   We often either give the children a twee theology  (Tweeology) that only gives milk and no meat (wrongly assuming they can't manage meat), and  doesn't stand up to the rough and tumble of school life, or we give a thuggish theology that gives so many rules that a child just cannot live up to them. All of this, when actually, we should be giving meat, cut up into child sized pieces - the right size for their stage of the faith journey.

We also have children with additional needs to think about, where the above toxins can be amplified/made more toxic just because many question their ability to have faith - but that's a whole new topic on it's own. These children can also have faith.

But - there is an antidote to the toxicity! (because I can't help putting a positive point in!)

ACCEPTANCE , LOVE, GUIDANCE and  SIGNIFICANCE

In the discussion that followed - both in small groups and as a larger group it was said "that's the same for anyone walking into our churches". Yes - that's absolutely right! In this whole discussion, what we are talking about is 'community and family'. Not a group of children along side a group of adults, but integrated community.

Other comments and questions that came out of this section of the day we're numerous and helpful, including comments on how busy children are with their various activities and the difficulty of finding a night that churches can run clubs and activities.

It was also good to receive a question on the use of social media with children - something I may well blog on sometime on the future (including making it work from a safeguarding point of view). I do see a value in using social media in  the right context. Youngsters who often won't open up and discuss what is bothering them will often publish it to the world of Facebook. It's a good way to find out what interests them and what matters to them, and then use that 'social media relationship' to build community with them within the church. To be able to ask a young person how an activity they mentioned on Facebook went, can add value and significance to a relationship. 

We shouldn't be 'about' getting bottoms on seats on a Sunday morning, what we should be 'about' is building family and making our children feel valued and significant. That value shouldn't be based on how many times a child can make it to our activities - it should be based on the fact that our children are valued by and significant to God.

There was one thing that occurred to me whilst preparing for this (probably due to my dyslexia), and although I had it in my notes, I didn't have time to say it and 'unpack' it:

 It takes a whole church to raise a child, but could it be said - it takes a "whole" child to raise a church?

I'll probably blog some more on what some of the other contributors said at a later date, but I think my favourite quote of the day came from David Niblock (Abundant Life Church, Bradford): "Don't put a lid on your children"

Problem or Purpose & Potential?

Ok - I’m a kid’s worker and I believe in evangelism amongst children. I have a passion to see ALL kids responding to God and growing in faith.

But when we think of evangelism and work with kids, where do those with disabilities and special needs fit in? Are they even part of our thinking when we write our evangelism plans and goals? It is sad that in many churches, children in general are not part of the official outreach programme, but children with special needs and disabilities? Well…….

When we think special Needs and disability, are we tempted to see the problems? Or can we see beyond potential difficulties and see firstly, a child and then the potential for faith and a life lived with God?

It is always a temptation to not see the child, but the diagnosis instead. We’re tempted to recruit people to a problem that needs sorting out rather than asking people to catch the vision for enabling this child to be everything they can be in Christ.

When I run training days, I find people want me to fix the “problem” with a quick fix or a bandage. It takes a long time to shift the focus from ‘problem’ to ‘purpose and potential’

Let’s be realistic here - usually, the only children with disabilities in our children’s work are those whose families are already part of the church family. Our mid week clubs have children with special needs who come from families on the edge of church. With both of these groups - we struggle, so how on earth can we cope with bringing more in? (Rhetorical question!)

As a teenager, and for many years after I worked on a summer camp for children with physical disabilities - I loved it! Many children came to know Jesus in a very real way, but…… Where could they go after camp? For a child with severe cerebral palsy, whose parents don’t want to go to church - how do we get them there, and how do we keep them there? In rare cases - we managed it, but as a rule, we didn’t. 

I’m still in touch with these ‘kids’ - many of whom are now adults. They don’t follow God, some are into “crystals” (One even has an advanced degree in the use of them!) My heart breaks!!! 

So who is reaching out to the disabled and vulnerable kids in our communities?

I’ve already been ‘realistic’ - now I’m going to be brutally honest…… Many of these children have short lives - I’ve been to far too many funerals! Happily, some of those have been for children still walking with God and a huge witness to their friends, but equally - there are so many more who are not in relationship with Christ. These kids have less time to hear the Gospel than others - the need is urgent!

We believe in the Gospel, we believe in spreading it, but do we believe in taking it to some of the most vulnerable kids in our communities - is “The Church” brave enough to step up to the challenge?

Who Choses Who Can Serve?

I was talking to the parent of a child who is diagnosed as on the autistic spectrum a few weeks ago. I asked her what her hopes and dreams were for him. One of the things she highlighted was “being given the opportunity to serve”. This particular little boy is very intelligent, has an amazing understanding of theology, and can explain it. And in a way that probably only he and God can understand, he has a real faith.

It does seem that in our churches, children are rarely given the opportunity to serve their church families – but for those who have a disability or additional need, the chance to serve is even rarer.

The mum I was talking to said that she would love to see her little boy’s Sunday teachers give him the opportunity to give out the biscuits, pour the squash, put away the chairs. Yes, he would need a little help, but it would do his self esteem a lot of good.

Another parent I spoke to was the mum of a teenager, also diagnosed as on the autistic spectrum. She thought a little differently. He was struggling to maintain his faith journey. He had a good understanding of his Bible, but needed fellowship. It was a much longer conversation, but it ended up with me suggesting he would be able to not only attend a bible study designed for those with his special needs, but he was more than capable of leading it himself. This idea was obviously a step too far for his mum. But why?

Who decides who can serve in our church families? I myself have a disability, and will rarely say how things are for me. This is because I know there will be someone who will wrongly assume that I am unable to continue my ministry because of it. This is obviously NOT the case. The only thing that sometimes stands in my way are issues of physical access.

Churches are doing better when it comes to ramps, accessible toilets, and lifts. But another ‘step’ to accessibility could be giving both children and grown ups who have disabilities or additional needs the chance to serve. Yes it’s scary, but it will also be a blessing.