Thursday, 21 March 2013

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.

Saturday, 9 March 2013

The Discrimination On Our Doorsteps

There's a lot being said about rights and discrimination - especially with recently having International Women's Day.

That's great - fighting for rights is always good, especially when we hear stories in the news from countries like India.

All over the UK I've been watching women talking about rights and discrimination, all motivated with one common aim - Brilliant.

I must admit that on that day Twitter felt like a mass 'back slapping' exercise with all the in crowd of 'wonderful' people quoting the names of other wonderful people - a world I definitely didn't fit into. 

I then went over to Facebook to look at the various forums I'm in: One for parents who look after kids with additional needs - mainly mums, another for people who want to see church more accessible - many ladies on there. Then there are my female Facebook and twitter friends who are either carers or have a disability/additional need.

No one was celebrating them.

One lady talked about her heart ache of not being included in church life because of not just her additional needs, but her child's too. Still another friend struggling to gain access to what she needed to be able to worship. And yet another wanting to serve, but being passively discriminated against because of her disability.

There is discrimination on our doorsteps, but the church largely remains silent, preferring to fight the corner for more 'fashionable' causes.

People are hurting, gifted people are being over looked and many, many people can't even hear the Gospel because of this discrimination.

What are we going to do about it?