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.


  1. Kay, I am soooo glad you posted this! Just be encouraged that you are not alone and others are as passionate as you in standing up for those who want and need to be included in our churches. It is so true that we need to examine what we are doing, not for the sake of 'progress' but so that all people can come to Jesus. I hate the phrase "It might ruin the experience for other!" (STAMPS FEET TOO) - church is not an 'experience'!!! It is a coming together of God's family for support, edification of everyone and service to one another. Grrrrr!
    Lynn x

  2. Thank you so much for writing this. It reminds me that I'm not alone in caring so much about including children with additional needs in church, or in getting angry when they are so often excluded, laughed at, shushed, or ignored. It makes me want to shout and scream too.

    Yesterday I had a group of students in church from our local special school for students with PMLD. We used our senses to explore the church: putting oil on our hands, sniffing incense, feeling vestments, looking at candles, holding the chalice, etc. We wondered together, smilied together, laughed together, and it was fantastic.

    We started our session just as the weekday Eucharist congregation were making their way out of the Lady Chapel. I didn't particularly notice them passing us, but I've seen several of them since and all have commented on the visiting group. Comments equally divided between the patronising ("It's such a ahame, so good of you to do that for them") the unwelcoming ("What were they doing here?") the ignorant ("Surely they can't get anything out of coming to church?") and of course the "funny" (too offensive to repeat). And I challenged each of them, gently I hope, to think again. But inside I felt like screaming.

    And these aren't bad people, they're lovely people, who care for their neighbours, volunteer for charity, serve the church. But they just don't see people like our visitors yesterday as their brothers and sisters, children of God, equals in Christ, deserving of respect. There is still so much to do, and we need people like you to keep saying things like this. Keep on screaming and shouting!

    Ruth (Children's Minister)

  3. That sounds amazing Ruth :o) Thankyou for commenting - it was really encouraging. And thankyou for what you do too.
    Are you part of the additional needs alliance on Facebook? If not, search for us and join :o)

  4. I am totally passionate about including families (and adults of course but like you my passion lies with children. There are always so many things to consider in meeting the differing needs of all children and those with experience often don't even realise until someone who is less experienced doesn't consider something. With regard to sensory overload I'd say that is totally variable in my church dependent upon who is leading the music/ on the sound desk. I am in the privileged position of having incredibly sensitive hearing and carry ear plugs for this reason, so am able to act as a intermediary around this issue but this is not always met with the most fantastic response. That said we have tried to make adjustments to the environment that support access e.g. there is a video link to the service int the entrance hall which means people can see and hear if too loud, but can walk in and out of service (you can see and hear from the entrance anyway but this makes it easier) it is also often frequented by dancing children running in and out of church as there is not a huge amount of space inside! We also have a sitting room style room with video link up for the same reason but if this is accessed a member of the congregation offers support in the room. That all said the sound is generally not too loud (except occasional feed back from being in such a small space for band- and they do try to address that) We have also opted to have standard (no mess music) some songs are signed but unfortunately consistent!

    We do not use an order of service and it's constantly on my "to do" list to have symbol supported order of service for children and those with additional needs in order to know what is coming/ when they are going out to their smaller groups.

    I would say our biggest issue during the year with regard sensory over load is the one thing that I actually have the most hand in planning is holiday club which is loud, lively, visually over stimulating etc. whilst we seem to have dealt with this with poisoning of children, individual support, and planning order of songs/ activities so if issues are expected the children won't miss out on the whole session e.g. come in when the noise has quietened or given another option. And actually we have never had a major issue, the unfortunate thing is we had one child who attended holiday club (he has sever autism) with no issues enjoyed experience and a great relationship established with mum. Now a few years later they have started attending church on a sunday, because the now young person is no longer afraid of organs! I had no idea this was an issue and that they had wanted to attend church previously but this issue had stopped them. Had I have known there could have been appropriate adaptions made we don't even have the organ played each week. This however has really highlighted how much we need to ensure people are made aware of the adaptions that can be made to support and that it would not be a problem (although it may throw up issues, theres enough stubborn people to make it work with the family never knowing there is an issue). I'm pleased to say the young person is doing well within the young peoples group, some consideration needed to support further but work in progress.

    Well haven't I gone on, sorry! I really love the post and gave me a good time to think through these issues.

  5. Thanks for your brilliant comment :o)
    Sorry I took a while to to publish and say thankyou - I was away and serving at Spring Harvest!
    I raised some of these issues in a couple of seminars I did, with some interesting feedback. Fodder for another blog post I think!


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