I was going to write a ranty post about the implications of genetic screening (and it may still work out that way) but in the middle of composing it in my head, I got a message from a friend who is isolated from her church, her family and community because she is a single mother with a severely autistic child. Many Christians would talk about the value of life and speak up against abortion, but then sit in churches that exclude these ‘valuable lives’ because they are so inflexible and inaccessible to them. Changing things for the few is met with horror at the mere thought. So families and adults with disabilities are left out, excluded, not welcome.
I wanted to join in the throng of ‘all life is sacred’ with the many that have responded to Sally Phillip’s BBC documentary that I watched last night. I believe that is so true. But I also remembered that some weeks ago, God prompted me to write about forgiveness for those who had terminated a pregnancy. Especially for disability reasons.
The thing is, bringing up a child with severe disabilities is frightening. Most of you reading this may have no idea. You may agree that you couldn’t do it. It’s why we must have compassion on those who have gone through a termination. We can’t imagine the emotional strain that has put on them and their family. We can’t imagine their hidden pain and guilt about whether they did the right thing. Or guilt that they did think it was the right thing but daren’t say. And it’s why parents of children are often called special, or angels, because the rest of us are thinking “there’s no way I could do that.” These are just normal parents though. They aren’t angels. They struggle and worry and hate their lives at times. They love their children and wouldn’t be without them. They want the best for their disabled child but are terrified of their future in a world that sees them as a burden. They have to fight for supportive education, for the right to be included in society and are so often brushed aside, insulted, patronised and rejected that they are broken and defensive.
But it’s also why we need to listen to the people who have Downs Syndrome. The people who grow up and who are treated as a burden on society. The people who are ridiculed, bullied, excluded, treated as sub-human. Parents are fighting to give them a chance in life. People who can articulate their stories are fighting to be heard. Like Karen Gaffney with DS who gave a TED talk “All lives matter.” It’s why we need to speak up and come alongside people with disabilties and seek to change our society. We cannot let this continue and be complicit by our silence. If we do, then in the not so distant future, ‘screening out’ all society’s undesirable and burdensome children will be normal and accepted.
I worked with children with severe autism and learning disabilities for 10 years. I’ve seen how hard it is for them to live in a world that tortures them with rejection, sensory overload, lack of services and support and even reacting in horror when they go out into the community.. I’ve seen families at their wits end. Not because they don’t love their child, but because no-one will help them.
Anyone who has ever said, or thought that they have no disabled people in their church is either not looking properly, or goes to a very poor church. There are adults with Aspergers sitting on their own at the back. There are the elderly with early signs of dementia, there are people with mental illness, silently crying out to God whilst they pretend everything is ‘fine’ on the outside. There are families where the parents take turns to come with their non-disabled children while the other parent stays at home with their child who might disrupt or can’t sit long enough in the Sunday service. (NB. You should know by now that excluding a disabled child or adult because they might “disrupt the service” is something I very annoyed about.) there are even more families and adults with disabilities who sit at home felling that church isn’t a place for them.
Our churches should be places where everyone is welcome, accepted and included. Our churches are full of messed up, opinionated, imperfect people. That’s me. That’s you. But Jesus gave us very clear guidance on how to love one another. Forgiving one another, sharing one another’s burdens, lifting one another up, putting others before ourselves, standing up for one another, weeping with one another, praying for one another.
My challenge to you this week is to watch Sally’s documentary and listen to the value she gives to her son Olly and other people with Down’s Syndrome. The listen to the scientists and the value they give to people with DS. Then get praying.
Secondly, the challenge is for you to go and live that out and go and get to know someone in your congregation, community or network that is disabled, or a parent of a disabled child. Listen to them. Learn about their lives. Don’t think you have to wade in and solve all their problems. Just build a friendship and whatever God wants you both to do, will come out of that.
My week is always improved by a visit to a café with a friend. This week it was S, who has Downs Syndrome. To go out as friends, to share each other’s lives (and cake), to know about each other’s family and what we’ve been up to that week, to laugh and cry together. That’s the kind relationship Jesus intended. Please, take up the challenge and make positive, equal relationships. Go on then….
And maybe it’s better I didn’t rant!