A highlight of my Christmas season was the chance to work in partnership with Unique, a charity, whose mission statement is to understanding chromosome disorder and to work with families thus affected [www.rarechromo.co.uk]. Together we put on an inclusive carol service Christmas service for children with special needs. The Service was a joy with children delighted to be able to read themselves rather than always have to listen to others do so. The parents were relieved for not having to face disapproving stares for not keeping their children quiet. The pity was that the service could not be seen as a natural part of the mainstream provision at the Church and that the children needed their own special event. We went ahead with a specially designated ‘inclusive carol service’ for the sake of the parents as well as for the children. They were glad to meet with others in the same situation as they.
Parents of children with special needs don’t want to be patronised and met with sympathy at the church gates; much less do they want to feel blamed for their children being noisy in church. Children with special needs should be celebrated and not tolerated or felt sorry for. I have come to love and appreciate the different qualities all of the children I have met through our inclusive carol services. There are the gentleness and affection of a child with Downs Syndrome; the focus, intelligence and frustration of a child with autism; the confusion and vulnerability of a child with epilepsy.
I have learnt also from adults with special needs. The extremes of behaviour, in an adult with bipolar disorder, have taught me to rethink how I view society. Our project to feed the homeless would never have got under way were it not for the bipolar fuelled certainty, that we should do so from a member of the congregation who had himself been previously homeless.
I have learnt from the tolerance shown by people who have to negotiate inhospitable buildings with their wheelchairs. My most loyal of friends is Sam, my millennial godson, with autism. He can remember Peter Rabbit as the first film we watched together when he was a child and likes to have it repeated when he comes to stay. He played, on the piano, the music score from The Pirates of the Caribbean, having heard the original only once.
As someone myself with a disability, I have to strike the balance between letting my ‘employer’ be aware of my condition but yet retaining their confidence that I can do my job properly. I face the same conundrum as development agencies. They want to establish the need for their services yet have to avoid poverty porn in order to do so. I may need an employer to make reasonable adjustments for my condition but I don’t want them to feel sorry for me because for them to feel pity for me would be a judgement that I am worse off than they.
Christianity is not simply lighting a candle and feeling better about ourselves but confronting the selfishness and possessiveness in all of us. We all have different types of need and compulsion within us. I am grateful to my disability for helping me to confront my instinctive desire to have things my own way.
The subtle nature of God’s reign is not about power but about a relationship of love and care in which God is identified as being in league with the most vulnerable in society. The children overturn the natural order and teach us how this might be done.
God’s mission, says Pope Francis (2013), is for a ‘revolution of tenderness’ through the Church. People will learn the joy of relating to Christ as the guiding light through whom all things make sense. It will be a Church that is vulnerable, bruised and hurting because it has been out on the streets and not stuck in a confine. It will be a Church that feeds the homeless, befriends those who have been divorced, and welcomes the marginalised, the disabled and the lonely.
The Church stands alone in creating a climate for social change. Once we have committed ourselves to relationships with people who do not reflect back to us our own world view, we are admitting to a wider set of concerns than simply our own. This was the opportunity we missed. A special feature of our inclusive carol service was the chance for parents to meet together and draw strength from others in their same position. A special sadness for me was that the wider church did not have the chance to learn from the example they set.
This article first appeared in the Church of England Newspaper