Friday, 23 May 2014

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!)

Many talks or blogs on additional needs start either with facts and figures, a bunch of info on how to ‘look after’ these children and young people, or a tirade about how badly we deal with them.

I’m not going to do that - Instead, I’m going to let my young friends speak for themselves. A record of God’s faithfulness and activity in the lives of children and teenagers with additional needs:

Julie is teenager with severe quadriplegic cerebral palsy. It took hours to answer her questions about becoming a christian because she communicated through nose spelling and facial expression. Once she had made that choice her faith was obvious and joyful…. very joyful! She can’t sing, stand to worship or raise her arms. Her face said it all - and her out of rhythm tambourine playing (Placed on her foot) was worship at it’s best.
This young lady is the reason I do what I do today. 
She was a woman of influence and a worship leader.

Andrew was a teenager with muscular dystrophy who I’d known since he was 8, and my first experience of a child with a disability. His faith was quiet but deep. He died in hospital telling his nurse that Jesus had come to take him to heaven - he described what he could see, and had a profound affect on that Nurse. He was an evangelist.

I met a ten year old boy with Aspergers on a church weekend where we were doing the children’s work. During a time set aside to ‘listen to what God had to say’, he told me that God doesn’t speak. I gently challenged him to ask God to speak. He did and was ‘given’ a Bible verse reference in the form of a car number plate that he then drew - he loved cars! This verse told him that God understood how his mind worked. He started that day cynical about God and faith, and ended up being surprised by God.

Jo was a two year old with microcephaly whose needs were severe and complicated. She was not expected to live long. I looked after her for those two short years and would pray over her and quote scripture, inserting her name into the verses. She showed obvious responses to this, and died in my arms smiling and happy. Hers was a very simple and yet profound faith.

Harry was a 9 year old boy with Down’s Syndrome, seemingly un-engaged with his programme at the festival he was attending with his family. All I seemed to do was run after him, stop him escaping and in between that engage him with songs. On the last day he signed. “Thankyou Jesus You’re My Friend”. He got it!

At another festival we had a 7yr old girl with severe learning disabilities, who was normally non responsive other than the occasional Makaton sign. She wanted to come to the final session of the children’s programme and signed “I want to go to the house where Jesus is”. Her mum was amazed!
She could recognise that God was present. She was even happier when we talked through the fact that God wasn’t just in the programme, but was everywhere - and was going home with her. She is another child who recognised the presence of God around her. The Holy Spirit didn’t find her obvious additional needs to be a barrier.

James is a 7 year old who is on the autistic spectrum, whose understanding of theology is amazing, and whose questions help everyone around him to connect with God - he asks what others want to ask..… but daren’t! He says that sometimes he doesn’t ‘like’ God, because God stops him going into his “Inside world”. He’s a young theologian who recognises God’s hand in his life.

Nick was a 17 year old with muscular dystrophy whose last wish was for his head teacher to tell all his school friends that “the best thing my friends can do is to follow Jesus”. Following his death, his head teacher passed the message on in a full school remembrance assembly.
Another Evangelist.

I have many more stories of children and young people with additional needs being touched by God, and being used by God in their different situations. I know of many more of these children and young people who bless others and teach so much about faith - just by their presence. So why are so many families with youngsters who have additional needs told by their church to find another ‘more appropriate' church? Don’t they know what they’re missing out on?!

But four of these young people didn’t come from families who went to church. Three of them were reached through a specialist evangelistic camp.

Today it is rare for evangelism to be done in the area of additional needs and disability, and yet it is the largest unreached people group in the world.

I am totally and completely passionate about reaching these children and young people, and as you will see from some of my young friends - time is very short for them.

Are you up for joining me in reaching them?

Friday, 2 May 2014

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.

But along side the cheerleading of these speakers, I’m also a bit of a disability terrorist - a gentle one, but still a terrorist. If you have followed my blog you will already know this ;o)

You rarely see a speaker who is disabled do you? 
Yes, I do realise there may be those with hidden disabilities, and I also know that on a person to person ratio there will be less folk with a current disability*. But I find it disturbing that out of the many speakers out there who have a disability, few are given a voice.

*during our life time, over 90% of us will experience disability

In fact many conferences are inaccessible to those who just want to attend.. let alone speak…

(Please note: I am not drawing attention to any particular conference - I’m being general in my comments)

There is a joke that to tick all the politically correct boxes on government things, I need to be a female, with a disability, and of a different ethnic origin. (In reality this isn’t the case - believe me, I know!)
But I’m not talking about being politically correct here. I’m talking about honouring people.

I would also like to add that if I am asked to speak or lead anywhere, I would rather it be because I have a gift and not because I am the token female ‘cripple’! 

I have many comical, scary and sad stories of being asked to speak where venues were less than accessible -  feel free to ask me about them!

Many Christian organisations intentionally have a balanced male to female leadership, but very few have intentionally sought good leaders who have or understand disability - and when you think that over 90% of our population will have a disability at some point in their lives (YES - over 90%!) - this is worrying.

I don’t believe most of the conferences deliberately only ask white able bodied men to speak - they just don’t think! (There may be one or two who are intentional on only having men, but not all)

And I don’t think speakers who are disabled are deliberately excluded - it’s just not on the radar…. but it should be.

Policies on equality/inclusion for churches, Christian conferences and organisations should include disability.

But for conferences and festivals, this is how it usually goes:

Many conferences like their speakers to be sponsored by either their organisation or their publishers - this means good speakers whose organisation has no money, or who don’t have a publisher are overlooked; Unless they use their own meagre savings to sponsor themselves. If you are disabled this can cost even more - especially if the conference is in London.

Many conferences will go for “crowd puller” speakers - this means great speakers who are lesser known miss out - and so do the hearers. 

We are still suffering with a hangover from a male dominated world when it comes to speakers, and so, in some circles the male speakers are better known.
Add the disability issue and we are even further back than the women speakers issue. In our church history those with disabilities were either hidden or at best “looked after” with the assumption they wouldn’t lead, speak or even contribute. Hence - most platforms and pulpits are inaccessible, the worship is often inaccessible, and the language we use is excluding (at best!)

The thing is - I’m not good at badgering people about this - I’m too polite and worry about upsetting people. I could do with a few more people….. who are ‘not disabled’, speaking out on my behalf.

Why ‘Not disabled’? Because people assume I am fighting for myself - and I’m not. I was fighting for disability rights BEFORE I became disabled.

I thought those with disabilities had a raw deal in church at at conferences BEFORE I became disabled.

It is pure coincidence that I am, myself, now disabled.

Will you speak, shout and metaphorically stamp your foot with me? Please? Thankyou.
(I'll also be at CRE on Tues/Weds, in the 'Churches for All' zone if you want to say hello!)

Those who know me well will probably be thinking “But you regularly serve a well known Christian conference/festival thingy”
Yes I do  - and they are fantastic in the way they support me. They are intentional in finding accessible locations for meetings, and they make allowances for my expenses being a little higher due to not being able to use some public transport. I also know that the disability word is high in their consideration on all things…..and… there are folk with disabilities on the speaking team.
I advise them on making this particular conference as accessible as possible for guests -  with the resources we have. Plus, I am supported and cheered on by all involved in making that event happen. And they are also intentionally diverse with their speaking teams - Yay!

Wednesday, 30 April 2014

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!

The seminar seemed to really connect with those who came - not because we told them how to cope, (I wouldn’t presume to!) but because we simply shared our story.

In these seminars you get a mix of those with a disability, the family of people with disabilities, and pastors. It’s difficult to know where to pitch a seminar like this with that mix, but we prayed that our story would speak to all and give what each person needed to hear.

Apparently it did.

I’m a great believer in using story to teach and encourage…. well, I’m a children's worker after all!

Steve spoke about what it is like to be the carer. (Now called a “Personal Assistant”!)

I spoke about what was helpful for me, and about comments I’d had over the years that were decidedly unhelpful. I also spoke about heavy handed theology from both extremes and about how body image can affect some people who have disabilities.

Tackling how disability can affect you spiritually was a hard one!

The amount of Bible verses, ripped out of context, I’ve had quoted to me has been astronomical, and battling through piles of weird theology people quote has been exhausting.

Even with my normally happy disposition and belief in God, there are times when I have to say “What?! Enough already!”

But even that doesn’t quite cover it. The best I could come up with was a line from the Leonard Cohen Song ‘Hallelujah’. 
It says: “It’s a cold, and it’s a broken Hallelujah….”

But what makes my praise cold and broken?
  • It’s not my faith levels!
  • But it can be my pain levels…. 
  • Sometimes it’s grief for what I have lost to these diseases - and the fact that some folk think I should be “over it by now”
  • It’s quite often the insensitive comments I get…. of which there are many. 

  • Sometimes it's the list of miracle cures I'm told about!

  • It’s sometimes that fact I am sick of the labels people give me: ‘The Wheelchair lady’ (I have a name you know!) ‘The one that shouldn’t be allowed out’ (What?!) ‘The fire risk’ (Yes I really have had that one!)
  • Sometimes it’s getting used to a new body image. (I shared in the seminar that I feel both ugly and self conscious when I use my wheelchair).
  • It’s sometimes those accusing thoughts that I’m not really disabled, and one day I’ll get found out. (Not true - but apparently I’m not alone in getting these ridiculous thoughts)
  • It’s not the fact I can dance and run in my dreams (I’m not alone in that one either!)

But on reflection - it’s partly the guilt cycle that I and many other Christians who are disabled go through on a weekly, sometimes daily, basis.

Guilt for reacting to things in the list above - because we’re Christians and should know better.

Guilt about shouting at God (Some flavours of church really frown on this)
Guilt because we haven’t been healed…..(Apparently some feel that’s due to our faith levels)

We are told in scripture to be content in whatever situation we find ourselves in….. yes, we are allowed to challenge unfairness, and we shouldn’t put up with some of the stuff thrown at us, but we still feel guilty when we do challenge or comment. (Or use the gift of sarcasm as I do!) 


When we can’t worship because what we need is not available (The ability to see song words, hear what is said etc) we feel guilty for getting irritated - we’re supposed to be content - right?

When the language used excludes us - not a rude comment about disability, but it shows we’re not noticed….. apparently we’re not supposed to say “Oh no we won’t” when the worship leaders says “We’re all going to stand and sing…..” and then we feel guilty for thinking it, because we’re supposed to be content - right?

When we hear a rave review about a theological book only to get excited and then find out some Christian book sellers don’t put books into ebook (large font!) formats (especially theology books!) - despite repeated requests. Then we feel guilty about complaining - because we’re supposed to be content - right? (And disabled people can’t understand theology….. sorry that’s my sarcasm gene kicking in again!)

When the church is accessible from the outside - but less than accessible inside…for many reasons. We feel guilty because more than one of us wants to sit in the only accessible place in the church where you can see and sit comfortably…and WE want it. We should be content to sit in another seat that will cause pain for the whole service - shouldn’t we?

Most times I can rise above all these things and more, but there are days when I can’t. Usually only Steve is aware of those days.

And on those days my worship turns into a cold and broken Hallelujah. And you know what - God doesn’t frown and point an accusing finger when it does. Thankfully - He ‘get’s it’.

I am content - But I am not content with the way the world sees and treats disability. I am certainly not content when the church does the same.

Friday, 25 April 2014

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!)

“…..Worthy of Honour and Respect”

We talk about honouring God, but rarely talk about honouring those around us. We talk about respect in the context of church and how we do church, but often fail to give respect to some of the people who come to the church.

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

A number of years ago Adrian Snell wrote a concept Album about the journey of  a family with a child who was disabled, called "Beautiful or What". A brilliant album.

One of the songs is a dialogue between the child with a disability and God (via her Rag doll)

One line sums up a lot of what I want (& probably fail!) to say in this post.

(God to Child): "Who dares to steal your dignity away when you're mine?"

When you are diagnosed with a illness that is determined to be 'disabling', dignity is often one of the first things to go. 

In recent seminars that Steve and myself did on coping with the onset of disability, and working with children who have disabilities, this is one of the things we didn't cover. But it came out in many guises, we just didn't name it as 'dignity'.

So, I wanted to look at it here in my blog.

As an ex nurse, the dignity of my patients was high on my agenda - even for the youngest and sickest of those I cared for. Even babies born with only hours to live deserved my honour and respect. In other words....dignity.

As I prepared for our seminars and delivered them, I heard the stories of others coping with disability - either theirs, a relative’s or their child’s. It became clear in those stories that many were mourning the loss of dignity - not just in the medical sphere, but also in their communities and their churches.

As I listened to their stories I was both angry and extremely sad. "Who dares to steal your dignity away when you're mine?” Apparently lots of churches do. And they’re missing out on so much by doing so.

Is turning a family away from a church because of the additional need/disability of their child treating them with dignity?

Is saying a child can’t join in with an activity they could easily do with supervision and then refusing them access to Sunday school treating that child with dignity?

Does keeping church services and worship inaccessible because we don’t want to change, give dignity to those who would dearly love to worship?

The song I quoted goes on to say “I celebrated the moment I gave you life”. The families and individuals with disabilities I spoke to don’t feel celebrated - they feel like an inconvenience. They have no dignity.

I know how they feel.

I do a lot of writing to churches and organisations to try and help them make what they do accessible - especially for children. I spend much time crafting my letters and emails to make sure they are not angry or accusing, but rather, supportive and offering help. I give the recipients dignity. But sadly that dignity is often not returned and I’m not even graced with a short (or long) reply. My communications are largely ignored.

I feel like an irritant.

After hearing all the stories, I did the only thing I could when I’m that angry and sad - I prayed. 

The next day a lovely gentleman (also disabled) stopped me and said he felt God wanted him to say something to me - something neither of us would normally have happen! It was just one sentence: “It won’t always be like this”.

God graced me with dignity by giving me a reply. He gave me and the families I represent hope.

He doesn’t see me as an irritant :o)

Those who have additional needs/disabilities often face another problem: When they are not treated with dignity, they feel really guilty if they complain or inwardly moan...... but that’s tomorrow’s blog.

For now - let’s give dignity to the people who come across our paths - disabled or not.

And if you’ve received an email from me……. please answer.

Wednesday, 5 March 2014

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.

Facts from the United Nations:
  • Mortality rates amongst girls with disabilities are much higher than for boys with disabilities
  • The World Bank estimates that 20 per cent of the world's poorest people have some kind of disability, and tend to be regarded in their own communities as the most disadvantaged.
  • Women with disabilities are recognised to be multiply disadvantaged, experiencing exclusion on account of their gender and their disability.
  • Women and girls with disabilities are particularly vulnerable to abuse. A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 per cent of women with intellectual disabilities had been raped and 6 per cent of women with disabilities had been forcibly sterilized.
  • The global literacy rate for adults with disabilities is as low as 3 per cent, and 1 per cent for women with disabilities, according to a 1998 UNDP study.
  • In Europe, North America and Australia, over half of women with disabilities have experienced physical abuse, compared to one-third of non-disabled women

From "WorldBank":
Despite the high numbers of women and girls with disabilities – especially in developing countries – many women with disabilities report feeling “invisible” in the development context and largely absent from the development agenda. Even when gender considerations are incorporated into development projects, the specific perspectives and needs of women and girls with disabilities are seldom sought or incorporated.

Women with disabilities make up a sizeable proportion of the global population, and a majority of the population of persons with disabilities in developing countries. Although firm statistics have been difficult to acquire, current researches estimate that:
  • Literacy rates for women with disabilities globally may be as low as 1% (UNDP)
  • Women with disabilities make up at least 10% of all women globally (WHO)
  • Women with disabilities comprise three quarters of all disabled people in low and middle-income countries (USAID)
  • 65-70% of women with disabilities in low and middle-income countries live in rural areas (USAID)
  • Women in general are more likely than men to become disabled because of poorer working conditions, poor access to quality healthcare, and gender-based violence (ILO)
  • Only 25% of women with disabilities are in the global workforce (UN)
  • Because of increased risk of gender-based violence and lack of access to reproductive health care services, women with disabilities face unique challenges in preventing HIV infection (WB)
Nuff said.......

I'm Not Blind, But I Can't See.

I've been tweeting about websites with small print this morning.

My motives for this are two fold - and has nothing to do with being a grumpy old woman!

1: There are a lot of people out there, not always with specific sight loss problems, who find reading difficult, and would find it easier to read websites and blogs if the owners made just a few simple changes. They may not have access to the things that would help them do the adjustments themselves.

I also have a sight problem - I'm not blind and I can see better when things are a long way away! (I need longer arms!) But I struggle to read many websites.

My problems are a combination of three things:

1. I have a fine nystagmus - a side effect of the conditions I have. This causes text on a page move around making words a moving target. The smaller the text, the harder it is to target it and read it. Large clear fonts help with this. Heavy patterns around a page or behind words make reading almost impossible.

2. The conditions I have also cause spasms and weakness in all the muscles around my eyes - this makes reading painful after a short space of time. Larger fonts can double the time I can read for. If I read for too long it will be difficult to keep my eyes open.

3. The fog that comes with the conditions I have, sometimes causes a form of dyslexia, including auditory dyslexia. (Listening for a long time can make words muddle). This is worse when I'm tired. It also means using text to speech isn't always the answer - I need either the words and the speech together, or the speaker in visual range as they are speaking. (It's why I dislike speaking on the phone)

There are lots of people like me out there. Not classified as blind or partially sighted, but still struggling to read stuff.

I'm thankful that with all my contacts, I've managed to put together a good armoury of gadgets and apps to help me carry on as normal. Some of my readers were probably quite surprised to read the information above! I'm able to hide it well.

Not everyone has the help I have found.

It doesn't take much to take away the need for so many gadgets and apps for reading on line. To make a blog or website visually accessible makes it easier and more pleasant for everyone to read. It's a win win situation!

In this blog I'm talking mainly about websites, blogs, and apps.

And here's what you can do to make things easier to read:

Does your website override the settings on a user's computer/device?
I have my browser permanently set to an 18pt sans serif font and my magnification at 150%. This allows me to read most blogs and websites...... unless.... the site overrides my settings.
Then I try to use the cmd/+ to enlarge what is in front of me, the page enlarges...... and the text stays the same! Some email settings do the same.
(cmd/+ is Mac speak - the combination of these two buttons enlarges what you see on a screen. Windows has similar button combination to do the same. Using the enlarge gesture on your mousepad does the same thing)

Check your settings and have a play, try using the cmd/+ keys on your site and see what happens - does the font stay the same? If you don't know how to change your settings, get a techy person to do it for you. If the web hosting people don't give you the ability to change this - contact them and introduce them to the idea of accessibility.

Does your website merge/overlap the enlarged text?
Some sites don't override the font setting, but the settings on the page mean that text, buttons and menus overlap making it impossible to navigate.  Or the column sizes stay the same and you and up with one word on each line!
(I get this on some HTML emails too)

Again - get someone to check your settings or talk to your host/provider.

How visually busy is your site? We understand that you want it to look good, but patterns that are visible behind text makes reading really hard. (Especially if the font won't enlarge!) Overly patterned borders tend to 'move around' on the edges of our vision, and so end up detracting from the text in front of us

What colours do you use? Some colours are generally accepted as not accessible; Red and orange being two of them.

What combination of colours do you use? Use a good combination of background colour and text colour with a reasonable constrast. Red on blue, as you know are horrible, but combinations of blue and green can be illegible to many too.

For mobile phones and tablets, it really helps if websites and blogs are set to work on mobile devices. (With the settings allowing devices to override font sizes etc) When all the settings work together, reading blogs on a phone is great! (Doesn't always work on Apple devices - they tend to do their own thing, which is why I own an android phone!)

If you use an app - does it allow user defined font settings, and does large mean large (For most apps, enlarging font means changing it from super tiny to very small). Does it also increase ALL the font? Social media apps that allow larger fonts don't enlarge it for writing posts, or on the name of the person who has posted on your time line etc. It only enlarges the post content. It doesn't seem to occur to them that if you need large font for one thing - you need it for it all!

Please lobby app writers about this - I do!

If you are a person who struggles with reading blogs - try using Evernote Clearly on your laptop browser. It won't work on visually busy sites or social media sites as it is primarily designed for blogs.
Using a 'read later' type app can help too as you can set fonts for reading later.

Check out the text to speech options on your laptop too. They're clumsy on an iPad and take a lot of getting used to - but have a go - it may work for you (I use them for the Kindle app if I feel I need to listen rather than just read)

I may come back and edit this and add more ideas, but that's all for now.

If you want to see some good examples of visual accessibility, take a look at:
Krish Kandiah's Blog
The Evangelical Alliance Website
The FIEC's Website
(I've been asked to check out some new sites.... so I might be adding those when they go live!)

Happy blogging/blog reading :o)

Sunday, 23 February 2014

'Something' for Lent

I don't tend to do 'something' for lent  - It's usually such a busy time of year for me that it often passes me by.
Some friends give up chocolate, others give up tea, coffee or even diet coke. Some even give up Facebook!

But this year, I have decided to do 'something'.

My word for the year is 'Thankfulness', and I've been trying to write down/make a note of what I'm thankful for at least once a week.
I've just put them in my thankful book - one I've set aside for my thankful notes, and it's quite a list already!

What I've found is, once you start looking for the good, you start to let cynicism and the grumps go.

I'm like a lot of people - nine people can say nice things to me, but my brain will go to the one who said something unkind, and in a day where five wonderful things have happened - my mind will lock on the one thing that was bad - forgetting the good.

I want to do 'something' about this.

So - for lent I won't actually be giving 'something' up!

But I will be doing 'something'.

I'll be making a note of what I'm thankful for every day, concentrating on the good things rather than the bad stuff. Intentionally only doing what I have to do to deal with bad stuff (You can't just ignore it and hope it goes away can you!), but I'll try to choose not to dwell on it. Instead I will try to dwell on the things I am thankful for. On some days this will be an act of will - living with two chronic pain conditions tends to put you in a dark mindset. But I'm determined.......

But in doing that, I'll be attempting to give up that 'woe is me' attitude that hits us all from time to time, and the habit of looking for the thinks that 'suck' instead of the things that were great. I hope it will keep cynicism at bay and add a lightness to my days too.

At the same time - I'm real. I know there will be days where it will be hard to find those things to be thankful for.

I won't post them to social media everyday - just some of them..... occasionally. Some of them will be personal, and I will keep them and ponder them in my heart.

Sometimes constant explosions of thankfulness can be hard on others who are having a tough time - I want to be thoughtful towards them too.

So quietness and not releasing my #LentThankfulness comments doesn't mean I haven't been thankful - I'm just being thoughtful.

Feel free to join my in my 'Something for Lent'.... and let me know how you got on.

I'll try to update after Easter.