A few weeks ago I was invited to help lead a YMCA learning hub on the subject of “Disability and Special Needs” -also in attendance was Rev Katie Tupling who offered a timely reminder that in any civil rights cause “Nothing about us, without us, is for us” and she of course is right.
I’m not a person with a disability, and can’t therefore with any legitimacy start to speak of that experience, but I am a Dad (in this case technically ex-foster parent) of a young man who has a diagnosis of Autistic Spectrum Disorder (ASD) and Moderate to Severe Learning Disabilities (M/SLD). When I speak it’s from this perspective, and with this passion behind it – but my experiences are NOT the same as my sons. I’m not the one who has been kicked, and spat at, not the one who has been called vile and hurtful names, and I’m not the one who has to live it out day after day.
In his case, as with many others, we’ve had to fight and argue (and we still do) for so many of the support services he needs. Even as I write this we have no idea what staff will be around (if any) over Christmas to provide him the support he needs, and whilst that’s irritating to the extreme for us, not knowing the extent of support we’re going to have to provide, because those being paid and contracted to do it won’t or can’t – it’s nothing of the uncertainty and insecurity it causes him. There are some things that we (as parents) have had to deal with that, certainly as a child, he didn’t directly: like when someone had stuck the prayer book pages together to hide the “badly” almost illegible prayer he had written, or the “tuts” we got from some in the early days when he would climb over the pews in his bright green wellies.
But I don’t want this blog piece to just be another set of moans and groans (though believe me it could be) about the negative aspects of dealing with attitudes towards disability, or the difficulties around accessing benefits and support services; instead I wanted to share some good memories from living and working alongside young people with physical and learning disabilities.
One of my Pioneer Ministry roles takes me into local schools, doing assemblies, prayer days, Godly Play sessions and Chaplaincy. One of the local schools I work with is Woolley Wood School, a specialist school for children with special needs. I always say at Woolley Wood that the children there “know how to celebrate” – I can honestly say that I’ve witnessed some of the best Harvest and Christmas celebrations ever there. There is something about how staff, parents and children grasp and live every moment of those times to the fullest. Last years Harvest Festival in particular, will forever live in my memory. A group of us from the food bank had been invited to the school, we spent time in the classroom, learning new songs and the sign language to go with them, then all of us went into the long wide corridor laid out for lunch like some great feast in the nave of a cathedral. Each class had cooked and brought something to the feast to share with everyone, we sat and we ate and we drank. Then we went outside to dance and play and enjoy each others company, before returning inside for the final act.Once again, we (as guests) were seated at the top end of the corridor and the children seated down the sides, some in wheelchairs, some independently – singing and signing “Love grows stronger when you give it away”. Gradually from the far end of the corridor a small group of children, and adults pulled along a decorated wagon – as it passed each class in turn their harvest offerings were heaped into the wagon, and then each class followed on behind it. For the full length of the corridor it came, piled higher and higher with food for the food bank, and the singing grew, and the laughter and the tears. My few words of prayerful thanks added nothing – all had been said, sung and given already.