Arm Stroking Christians

I tend to view my body as my own.

I don't think I'm unusual in that.

Only those with permission or those who I count as friends and trust are allowed to touch, even if it’s only a hand on my shoulder.

This is for many reasons….. 

“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”.

Speaking Kind Words

Proverbs 16:2 (ERV)
Kind words are like honey; they are easy to accept and good for your health.

Colossians 4:6(ERV)
When you talk, you should always be kind and wise. Then you will be able to answer everyone in the way you should.

Proverbs 25:11(ERV)
Saying the right thing at the right time is like a golden apple in a silver setting.

A quick search of the bible can bring up a lot of advice on how to speak kindly. Words often ignored in the name of whatever 'crusade we' are embarking on.

Remembering the Holocaust

As people around the world remember the holocaust, we have been shocked at newly released film footage from the concentration camps.

The documentaries showing this footage spoke a little of how those with disabilities were also targeted - either killed instantly in their euthanasia programmes, or experimented on in grotesque ways.

They were killed because they were deemed to be "damaging to the common good" by the Nazi party.

Choosing Speakers - Regardless.....

There’s loads of tweets and posts out there on conferences only having white male keynote speakers.

Do I support this campaign? Absolutely I do! 

I am blessed to know many gifted female speakers and speakers of a different ethnicity, and I am happily cheering them on from the sidelines. The conferences who don’t use them are missing out on a huge blessing.

A Cold & Broken Hallelujah

I’ve thought long and hard about writing this blog post.

It’s a vulnerable one…. and I hate being vulnerable.

But it keeps screaming at me to be written, and this is my third attempt at writing it!

It stems from a seminar that Steve and myself did at Spring Harvest called “Coping With the Onset of Disability”. I wasn't totally sure about doing it, but as I've quoted in another post - God appeared to think it was a good thing!

Stolen Dignity

Dignity: “The state or quality of being worthy of honour or respect.”

We use the word dignity in many ways, and as a result its real meaning has been eroded a lot over the years. 

I'm often described as dignified - but by that most people mean I don't complain much (they don't know me very well!)

On International Women's Day - Think Disability Too

In all the discussions surrounding women's rights in the lead up to International women's day, disability seems to be one area that doesn't get much of a mention.

As a campaigner for disability rights in both children and adults - I want to speak out. But I'm going to let the United Nations and the World Bank do the talking for me.

Why Would A Parent Choose Euthanasia?

Belgium is on it’s way to legalising euthanasia for children - it just needs the signature of the King.

So, Christians are all over the country are now mobilising to sign petitions that are directed at the King to stop this becoming law.

They are rightly concerned that this sets a precedent for other countries to follow.

But I wonder…….

Is Prayer A Duty Or A Joy?

As I was growing up, prayer was sold to me as a chore. Something I had to do as a duty. It felt as though having a good prayer life was the thing to be worshiped, rather God. No one told me it could be a joy. No one gave me the tools  to enjoy it or be effective - I was just told to do it, do it for a long time everyday and always do it in the morning. Not helpful!

From the reaction to my last post, it seems I am not alone in this. Many have sent private messages saying that they have the same problems with prayer, and thank you for saying what I said. (Anyone who doesn’t agree hasn’t commented)

It wasn’t until I moved churches when I was 17 that I realised how much more prayer could be. I went to a youth house group meeting and heard someone pray in a normal voice using normal language, as though Jesus was sitting right next to him. It sounded as natural as breathing to him. I’d never heard anything like it and it bowled me over.

That was 30 years ago. For over 20 of those years I’ve been in full time kids work and I’ve been determined to give kids a much better experience of prayer than I got - getting them excited about praying, but also facilitating kids with additional needs who find the whole traditional approach to prayer almost impossible.

If you look back through my posts you will see quite a few of the ‘object prayers’  I love to use with children, to spark an interest and an excitement in prayer

With the onset of disability in my own life, I’ve had to work through a lot when it comes to prayer. It’s given me a whole new perspective when it comes to cognitive ability and the process of prayer.

I’ve learnt that I can shout at God - but still worship.

I’ve learnt that it’s ok to say “it’s not fair” but still trust His wisdom.

I’ve learnt that He understands when I’m bone tired and soul weary and struggle to find the words to speak to Him - and yet on those days find I’ve had the best wordless conversation with Him ever.

I’ve also found out that God doesn’t mind if I sometimes read my prayers rather than relying on memory….. but more of that tomorrow!

Tomorrow I’ll be posting some short posts on things I find helpful for personal prayer - a post per suggestion. Later in the month I’ll post some things that may be useful to any age group in encouraging a habit of prayer

Be blessed - in the truest sense of the word!

The Forgotten Ones

I and many others are busy raising awareness about children with additional needs in our churches - there's a growing army of us!

But in all the forums, conferences, chats with families and focus groups what I'm finding is, there are still two groups of young people who are being forgotten.

There are lots of discussions about autism, dyspraxia, ADHD and other similar additional needs. That's great. The fact there is so much discussion (and sometimes heat) means these children are actually in our churches.  Awesome!

But where is the discussion on proper inclusion of children with physical disabilities? Hang on - where ARE the children with physical disabilities?? Have you noticed that on the whole, the only children we have with physical disabilities are those born to families already in the church?

There is no discussion, because there are no children to discuss.

And what about those children with hidden physical disabilities? I'm sure there are house bound young people with ME out there that would love contact with the church!

On chatting to a young lady in her teens recently, a girl who has a life limiting disease, she said that although she can't get out, she used to like getting invitations to church events, just because it meant she wasn't forgotten. Sadly, she no longer gets the invitations..... And she no longer feels included. No one from the youth team visits. How sad is that.

There is no discussion on these children/young people because they have quietly wheeled, limped or crawled their way out of the church for good - and that's if they managed to get in to start with. Many see the church as uncaring and uninterested and therefore don't even bother trying to come in.

We've fought the issues of physical access....... And many churches feel as though they've got that one ticked off their list. But they haven't.

Here's some things I bet many churches haven't thought through: 

- For a baptist type church, how do you baptise a young person who can't access the baptistry?

- If a young person who does not take food orally wants to take communion, what do you do? And what about young people with poor swallowing reflexes who choke/splutter when taking communion - how do you react?

- What do you do for the young person who is blind and can't see the amazing visual aids you've produced?

- Is it obvious how to access your church in a wheel chair with out having to ask? 

- Do you have an accessible parking space with enough room to open the car door wide so parents can transfer their child to a wheelchair more easily?

I think we need to look at our accessibility in our children's work, and if it is truly accessible..... We need to say on our publicity, on our websites an on our notice boards that our children's work is 'fully accessible' displaying the international signs for accessibility.

We also need to be intentional in our support of those children who are housebound due to disabilities, and also in our support of their families.

There are many children out there with life limiting diseases, their time for hearing the gospel is short, but it appears no one is reaching out to them. Why? The urgency is huge!

How about getting into the local specialist schools, or running carer's support groups. 

Use your imagination!

Don't wait for them to come to you, reach out to them.

It's Fibro Awareness Day - this is what it means to me

I don’t usually complain about my Myofacial Pain Syndrome or Fibromyalgia on my blog or on social media. I try to talk to the friends who know me well and know how to pray and leave it with them to pray. The whole of social media doesn’t need to know!

But today is Fibromyalgia awareness day (Also ME, CFS and other similar disorders) SO…. I’m going to tell you what life is like at the moment.

I will start by saying that I still carry on doing what I do, I have to find other ways of doing them, but I carry on regardless. Not doing stuff wouldn’t make a difference, so I might as well carry on!

There’s something that many are not aware of that happens to those with a slowly deteriorating disease. Each downward step brings grief, and it sneaks up on you unawares. If you let it, it steals your joy and makes you want to give up. But I decided a long time ago not to let these conditions define me or stop me.

One milestone has brought me relief, fun, but also a return of that grief.

I got a second hand electric wheelchair! It’s great fun, it’s brought me independence (I can now do London meetings without having to drag Steve along and pay for an extra train ticket) and it’s so much more comfortable. 

But it’s also an aching reminder of what I no longer have. Two years ago I could manually wheel myself around, or go to London and use a walking stick (slowly) without worry.

The Fibro and the MPS fight each other, and lately it has been the MPS that has the upper hand. Causing severe pain and permanent damage in my left side - especially my arm/shoulder, hand/wrist making using my walking stick really difficult (I can’t balance if I use it in my other hand) But alongside that, the Fibro is causing weakness in my left leg!

Life is never dull with these conditions!

I still do what I do - but now I have to check accessibility of venues a lot more carefully. I have to book assistance (and hope that it works) for trips to London - why are so many meetings in London? It’s SO inaccessible! If someone chooses a venue where the local tube station is not accessible I either have to pay a fortune on taxis or not go. Considering many of my London meetings don’t pay expenses…… this is costing me a lot of money!

I recently asked on twitter and facebook if anyone knew of any well known speakers who were physically disabled, there were a few - but not many. There are not many in full time Christian work at all - and I can see why.  

I feel honored to do what I do - to serve the church and the children in it. I wouldn’t do anything else - this is what God has called me to and He hasn’t changed His mind! But I say the following with care - It’s flippin’ hard!

It’s not that people don’t care or are deliberately thoughtless, that is so far from the truth! The reality is, it just doesn’t occur to people that a venue may not be accessible, either through transport or steps. When they realise - they are genuinely mortified! But by that time, it’s too late to change, or the more accessible venues are not affordable.

There are of course those who refuse to understand the issues I face - usually people who have known me a long time and just can’t get their head around the fact I don’t function like I used to! But these people are in the minority.

I’m not the only one with these conditions - there are thousands more people with them, some worse than me.

Pray for us, pray for me, but also pray for those people in full time Christian work who have a disability - many of them hidden disabilities, some more obvious, but all of us having to work harder to do what we do.

NOTE: This is not written for sympathy - I don't like sympathy! That's why you'll often hear my hubby say un-politically correct things to me - it makes me laugh!

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.

You probably Won't Read This Because It's About Disability.

I'm sorry for the tongue in cheek title - I did name it that as a joke, but as with many jokes, there is just a grain of truth in it.

I’ve come to the conclusion that when churches are thinking about disability and additional needs, we need a totally different way of thinking. Actually - some churches need to start to think about this as there’s no thinking to change!

How Does Your Church View Disability?

Is it part of the health and safety policy (How to evacuate the premises in the event of a fire) or part of the logistics policy of the church (Where do we put wheelchairs and is the loop system working)?

Is it viewed with some fear or maybe some belligerence (We can’t be expected to do everything when we don’t have any disabled people)?

Or, is it viewed with a different mindset? 

Is your church’s policy on disability placed firmly in the same place as caring for any other person in your church? Are they included in your pastoral thinking? Do you think of them when writing your evangelism policies? When you are training and helping people to find where their giftings are - do you include people with disabilities (including preaching, teaching and leading worship)?

We Need to Be Missional in Our Thinking. 

Rather than thinking “what do we do with the disabled people? Where do we put them, how do we make them safe and stop them complaining”,  we need to change our mindset so we see the person before the disability.

We need to stop treating them as a different people group. And to start seeing the need to facilitate faith and worship for all in our communities. We need to think differently for all those we are reaching out to.

Many of our churches are willing to think differently in the way they approach church and worship. We have seen an emergence of cafe church, messy church, seeker friendly churches etc, but sadly, there appears to be little appetite for making our services accessible at every level, for all.

Those who have disabilities are part of our communities. Yes, some may need to use a wheel chair, need large print or braille, need a signer - but first and foremost, they are people. If we start from seeing those with disabilities as people rather than a health and safety issue, and make them our friends, we will see much more easily how to facilitate them in our communities.

In caring for our church communities we think nothing of making meals for someone who has just had a baby, doing the ironing for some one who has had an operation, so why is caring for someone with a disability, and their family, such a big deal? Is it because it is a long term conscious decision rather than a short term emergency plan?

We Need to be a Welcoming Church 

The disability discrimination act requires us to be pre-emptive in our provision within services and church activities - on top of providing access to the building. I think this is a good thing - and a gospel thing to do. We want to be welcoming to any new person coming into our churches and that’s great! But how welcoming is it to come into a church and have to use the back door to get in? (Using the back door isn’t the issue - it’s the lack of welcome at the back door) To not be able to sing because you can’t see the words, not not be able to know what’s going on because the loop isn’t working….. The list goes on.

As a Christian who is disabled I have to put up with a lot. I rarely complain, but occasionally I will comment for the purpose of training for others. Sometimes I can see that things are done a certain way because there is a logistical problem, and for the greater majority it is the best way….. I am not the centre of the universe, it doesn’t have to be changed just for me. You will find most people with disabilities think the same way.

What I do comment on are thoughtless mistakes. They seem sensible to the person putting them in place, but they haven’t had cause to think it through from a disability point of view.

At the risk of embarrassing male readers, here’s one I and my disabled female friends often come up against:

We have to use the accessible toilet. When you look for the bin for sanitary items you find a note that says “The bin for sanitary items is in the main ladies toilets in the end cubicle”. Now, just stop and think that through a moment…. we have to use the accessible toilet because…… we can’t get into the main toilets!

I’ll close with that thought, but leave you with a challenge. How about looking around your church for issues just like this? How about sitting through a service looking at it from the perspective of different disabilities. Don’t just leave it at wheelchair users and those who are blind or deaf, think it through for those who are elderly and unwell, those who have learning difficulties, those who are autistic. Think about your children's work and your youth work too - there are many, many children and youth out there who have additional needs and disabilities. 

When it comes to those who have additional needs and disabilities  and are outside our church communities - it is a virtually unreached mission field. What are we going to do about it? How missional are we in our approach to disability?

How can your church be more welcoming to people (Adults and Children) who have disabilities and additional needs?

You can contact “Churches for All” for more advice. Just ask and I’ll put you in touch :o)

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?

"Thankyou Jesus You're My Friend" Amazing Stories Series (#1)

Around 20 years ago at a  large event, I was charged with looking after a 9 year old boy who had Down’s syndrome - he was what we affectionately call a “runner”. He would have given Houdini a run for his money in the various ways he could find to try and escape! This was in the days before children’s groups had specialists on their teams, so it was rare to be given a role like this. I was given the role because the leader of the team knew of my training and vision.  

Because I was also a musician I had to sing/play in the band. This meant I had to leave my young charge by the OHP (That dates this story!!) with another team member, where he would help with the song words.

Looking from the outside, it appeared he had no interaction with the spiritual side of the programme at all, and very little with the rest of the programme. It was hard work!

We used a lot of makaton signs as actions for songs, but this young lad would not sing or sign for the whole week….. That was, until the last day. On the last morning, with a big grin on his face he signed “Thankyou Jesus, You’re my friend” along with the song we were singing.

For all his appearance of not engaging, he had taken a profound message on board.

There were other positive things that came out of this: That particular team decided to make additional needs carers a permanent position on their teams. I also wrote to the head of the event - it was a very ‘frank’ letter about the need for looking at better additional needs provision within the children and youth programmes. I didn’t expect to get a reply - but I did. And year on year the additional needs provision grew and improved to the excellent work they do today. 

I’m pretty sure that other’s wrote letters about this too, so the change wan’t just down to me…… but I am blessed by the fact that I am now the disability and additional needs advisor for that same festival. 

This is just one story of one child who has made a difference. He doesn't know it, and I doubt his family do either.

Over the next few days I hope to post a few more encouraging stories about working with children who have additional needs. I have so many to choose from.....!

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.

I Have a Dream......

Let me introduce you to Gemma….

She’s 8, is autistic and love’s Jesus. But sometimes - she doesn’t love Jesus.

Sometimes she can be profound with her comments about Jesus, sometimes she just doesn’t want to even talk about Him - preferring to play with some lego, giving the impression she’s not listening. But she is listening.

I don’t understand how her faith journey works - I know God does. Her journey is important to me, the fact I don’t understand it isn’t.

The other thing that is important to me is how other people view Gemma and others like her. 

Mostly, she is ignored. 

The times she is not ignored are those times she makes a loud comments in church (Usually, an appropriate comment!). Or when she struggles to wait in line for a drink or a biscuit, or cannot wait her turn in a game - maybe shouting out an answer during the children’s talk in the main service. In other words, those times when she goes against what us “Nice” Christians consider to be appropriate behaviour in church. Other than that - she is anonymous. 

No one notices the depth of her faith, her amazing knowledge of the Bible or her ‘straight to the heart of it’ prayers. No one notices her parents either, even though they are desperate for support and conversation.

The same goes for many other children and adults with special needs or disabilities - they and their families are anonymous and ignored. 

I often quote Joni Eareckson-Tada: “The Blind can see with the eyes of Christ, the deaf can hear with the ears of Christ, a person with a learning difficulty can think with the mind of Christ”. This is so true, but who listens to what they have to say about it?

Everyone has their own thoughts, ideas and opinions, things they feel strongly about - those who have disabilities and special needs, child or adult, are no different. And surprise, surprise - it’s not always about disability!

I have a dream - I want them to be heard. I don’t want them to be anonymous anymore.