Disability Parents and the Church: Do Not Be Afraid

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We heard it again this week, in a casual conversation. As so often happens, it wasn’t even solicited, a pre-emptive answer to a question we didn’t even ask, for goodness sake: “Oh, our church couldn’t cope with your children. We wouldn’t know how.”

It’s hard not to come away from stuff like that feeling angry and frustrated. It never gets any easier, seeing your children ‘Othered’ so casually. So many churches like to believe they love everyone equally; the truth is, we love some more equally than others.

The thing is, I don’t think this is rooted in prejudice or deliberate policy. I genuinely think this stuff happens because people are scared. Scared they don’t have the resources, scared they don’t know sign language, scared they won’t know what to do in the event of a meltdown, scared they don’t know how to talk to someone who communicates in grunts and shouts. And when people get scared, the barriers come slamming down.

But here’s the thing: fear’s only helpful if you’re being chased by a rabid grizzly and his mates and you need your fight-or-flight impulse to kick in before you’re eaten. Meanwhile, biblically speaking, “do not be afraid” could almost be God’s catchphrase – he shows up and it’s often the first thing he says:

In the face of danger? “Do not be afraid.”

In the face of a difficult future? “Do not be afraid.”

In the face of your enemies? “Do not be afraid.”

In the face of angels and miracles and the Holy? “Do not be afraid.”

When you’re sitting in a room with children with disabilities? “Do. Not. Be. Afraid.”

Look, I’ll be honest here: sometimes I find life terrifying. I’m scared of how we’d stay afloat if I got made redundant or couldn’t work. I’m scared of what would happen to the boys if/when something happens to me or my wife. I’m scared I’m not good enough at this whole parenting thing because I look around and other people seem to be so much better at it than me. I’m scared that statutory authorities are throwing disability services under the bus as part of their ongoing cuts. I’m scared of the phone call that announces the next bout of mickey-taking random lunacy. “Do not be afraid” is often easier said than done.

But that’s external stuff. My children? They’re not frightening. They’re intelligent, loving young people with individual personalities, quirks, likes and dislikes.  They have additional needs, sure, but they’re far more than their disabilities. The Church Universal and Triumphant doesn’t need to be scared of them, because like everyone else they’re made in the image of God and he loves them, cares for them and wants to see them integrated into his family. All those times Jesus reached out to those considered to be on the fringes, out of the mainstream, the marginalised and the “scary”? He’s our role model. If he’s not, if the Holy Spirit isn’t working to constantly make us more like Jesus then our churches are just social clubs and they won’t change a damn thing.

But beyond that, I need to trust that God has our backs, that he prepares a table for us in the presence of DLA forms and austerity cuts and societal ignorance. When we’re clinging to the cliff face by nothing but our fingernails, I need to trust that God will catch us. And I’ll be honest, I find that so hard because in this jenga-esque life it feels like we’re just one wrong move away from everything crashing down.

And yet we’re still here. We’re still standing, still laughing, still eating and paying the mortgage and looking after two wonderful children who are growing up safe and healthy. God has brought us through a hundred storms, and though I still get nervous every time I see a cloud, he’s there beside me whispering “Do not be afraid.” Even when the clouds are dark and the lightening flashes. Even when I’m not listening.

Maybe I should listen more, right?

Maybe we all should.

Do not be afraid.

Disability Parents and the Church: Pentecost

pentecost1In the last season of Doctor Who, it was revealed that the TARDIS, which translates all known languages, both human and alien, couldn’t handle British Sign Language. And although I understand there were production issues to consider, and while it was great to see a deaf actor playing a major role, the Doctor’s inability to sign still bugged me. It felt like a failure of imagination, almost an ‘othering’ of BSL, especially as it was previous revealed that the Doctor speaks both baby and horse. It’s like we’ve limited what language is and can be, and that’s a very real issue when it comes to Pentecost Sunday.

Today we celebrate the moment that the Holy Spirit descended on the disciples, and in a moment that undercuts toxic disunity and ancient curses, the assembled pilgrims suddenly start hearing the disciples speaking a hundred different languages, barriers being broken down as the church is born.

“Hear.” That’s the magic word isn’t it? Because it makes some assumptions – sorry Dr. Luke – that we might not make today. There are other languages, other forms of communication that we need to consider.

My eldest son is profoundly deaf; his first language is British Sign Language (BSL). At the moment, the house is covered in flashcards to help him learn to read English, but effectively his communication is entirely visual.

And this should be a lesson to me personally, because when I preach, it’s entirely verbal. And part of that is not always having access to a Powerpoint screen, but I’m kidding myself if I don’t think that has the potential to be exclusionary.

(I live in Derby, which has the second largest deaf population in the UK. However, statistically speaking, only 1-2% of that population will be Christian, with much of that being put down to this issue of communication and language. There’s an assumption that sign language simply substitutes hand signs for English words, but that ignores the fact that the grammar is completely different, BSL has regional dialects, and there are lower literacy levels among the deaf community because of the way in which language is taught in schools. There’s a Pentecost issue here – how much preaching and teaching material is available in sign language? Is it exclusionary that ‘worship’ has been so conflated with ‘music’?

Alongside this, both of my sons are on the autism spectrum, and that’s a whole other set of communication issues. Again, it’s not always a spoken thing. My youngest son finds it difficult to process language – he gets the input, but his brain doesn’t always process that input in a way that gives it meaning, and so that affects how we need to speak to him. There’s also the use of visual timetables, which often help kids with autism to orientate themselves in time and space. Maybe our orders of service need to be translated into pictures so that those who need this sort of communication can get a grasp on our services. That’s certainly an experiment I need to carry out next time I’m worship leading.

(There’s someone out there, right now, reading this and thinking of churchsplaining* things to me: “That prevents spontaneity! You’re putting restrictions on the rest of us for a minority! What if the Spirit moves? Do you want to quash the Holy Spirit?!” To which I say: No. Don’t be ridiculous. But a) if our services are inclusive by design, people will be better equipped to handle the unexpected when it happens, b) the Spirit doesn’t just speak English and sing, so have a wider consideration of how He may be communicating with people other than yourself, and c) stop making excuses for having a limiting view of worship, the church and the Holy Spirit in the first place.)

(Once we were on a church weekend away and our eldest son – deaf and autistic, remember – came out of the children’s activities and made a beeline for the guest speaker, who had spent two days talking about the Holy Spirit. Eldest walked straight past his mum and I and stands there in front of the speaker before we knew what was happening, and the poor bloke doesn’t know what to do, and I have no idea what was going through Eldest’s mind, and none of this is really anyone’s fault, but what if that was the Spirit at work and none of us knew how to respond? Or what if the Spirit was making a point? That was five years ago and I still have no answers, but it still feels significant somehow.)

There are other non-verbal forms of communication that our churches might need to consider – braille, Makaton, lip reading – and that’s before we consider the difficulty some autistic people have with the literal interpretation of language – imagine what it’s like trying to interpret the central metaphor of eating and drinking the body and blood of Jesus when you struggle with metaphorical language. Maybe we need to develop a literal liturgy.

But in a way, this is all logistics. The first thing that needs to be considered is the theology of all this. Pentecost is the reversal of the Tower of Babel story, with the Holy Spirit overriding an ancient curse and bringing together people from many different backgrounds in order to birth the church. In this context, language is both a symbolic and a practical necessity. The church has always been good at sending people out to translate Bibles and to preach the Word in different languages, but there’s an opportunity here that we’re overlooking, one that’s not only on our doorstep, but in our families and our workplaces and even in our pews already. And overlooking it we are – it’s interesting that people accused the apostles of having had too much wine that first Pentecost, because often when you take to people about stuff like this, they look at you as though you’re drunk.

So, if there’s an opportunity here, are we going to take it? Are we going to prioritise it in our mission statements, our budgets, our worship gatherings, our hearts? Are we going to let the Holy Spirit to reverse this particular Babel?

Are our churches going to be different?

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*’Mansplaining‘ is an internet-coined word describing how a man will sometime condescendingly explain to a woman how she’s wrong about an issue she has personal experience of. I’m a bad person, because I couldn’t resist coining an ecclesiastical equivalent. I appreciate that, as an non-disabled white guy, I’m probably doing a bit of churchsplaining here myself.

 

Disability Parents and the Church: Gifts

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“Calling” isn’t something I’m good at; I turn 40 in November and I still don’t know what I want to be when I grow up. I work on the assumption that I’m called to preach, but that just raises other questions about how that gets worked out over the months and years to come. And, as autism parents, my wife and I have to help our kids navigate those same questions.

Here’s the thing: we’re all made in the image of God. And so, wherever possible, our children deserve the dignity of being able to figure out their place in the world and in the church. And that means focusing on what they can do rather than what they can’t do.

That’s important, because churches and other institutions can often focus on the ‘duty’ of dealing with disability rather than embracing the gifts and talents and insights of disabled people as part of the wider Body of Christ; there’s a danger of seeing projects, not people.

Okay. So. My eldest loves tidying up after services (Ironically, he also hates tidying his bedroom. Either that or he’s trying to catch me in his Lego death trap, but I digress.). He likes putting away mics and chairs and Bibles. He also likes doing the collection. And it’s possible to look at that and say ‘aww’, but behind all that is a gift of service.

Now some of that is rooted in him wanting to organise his environment, and he can get stressed out when something is ‘wrong’, but he’s the thing – he’s autistic, it’s part of who he is, his gifts and calling and everything else are tied up with that. We’re not able to separate it, nor should we try. And one day, fairly soon, he’s not going to be a little boy we ‘aww’ at, he’s going to be an ten-foot man who needs to be respected and honoured as someone who has gifts to offer the church, even if he can’t articulate and ‘spiritualise’ that without our help.

(That’s really just a case of catching up with where God is already.)

The same process is true for my youngest, who loves art (but melts down if his art project goes wrong) and who loves reading. And those are gifts that need maturing and developing, because God can use them to build up the church; God sees beyond the meltdowns.

There are other gifts the church needs to think about nurturing (and I’m talking to church leaders here – this is a pastoral thing and shouldn’t just be the concern of disability parents). I’ve met people who seem to have an innate ability to engage with disabled children. I’ve met people who make sure Santa is up to date with BSL every Christmas (because of course Santa and his helpers should know sign language).

Heck, if your church has a few autistic kids in it, maybe one of the elders needs to be speaking nicely to the adults who like making train sets. Autism parents know what I mean!

Think outside of the box; there are gifts and talents and interests that aren’t listed in the Bible but which God can use. One of the Holy Spirit’s roles is to build up the church through the gifts he gives; that includes gifts of (and for) disabled people. And those gifts may not always look the way we’d expect, but they’re there, and the church is impoverished without them. And we discover the existence of these gifts by having genuine, caring relationships with people; we discover these gifts by talking to them.

Let’s look for the gifts the Spirit has given us. That may be where we start to see an exciting – and inclusive – future for our congregations.

Homeless Jesus

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Jesus lies on a park bench, covered by an inadequate blanket. You might just ignore him, write him off as just another homelessness statistic, a junkie or a skiver or a veteran with PTSD who can’t handle civilian life. But take a closer look – his feet are scarred with nail marks. We know who this is.

Homeless Jesus is a sculpture by Timothy Schmaltz, copies of which are on display in Texas and the Vatican. Currently, there’s a controversy about if and where a copy should be displayed in London (story here, petition here).

There’s something about the statue that gets to the heart of the Incarnation. Jesus doesn’t appear as a spiritual entity untouched by the world around him – he’s down here in the dirt and grime. This is someone who went through hell and spent 18 years on building sites. We tend to forget that – we put him on a pedastal as a great moral teacher and a source of inspirational quotations. And if he’s up there on a plinth, then it’s disruptive to see him sleeping on a bench.

But we divorce Jesus from the marginalised, or move him from the fringes, at our peril. This is a man who, were he here today in the flesh, would spend more than a few nights sleeping  in the doorway of an off licence or contending with security guards and defensive architecture. That’s the sort of person he is. That’s why he had such a following among lepers and prostitutes, the beaten and the broken.

And so we want to honour him as Lord and Saviour, sure, but he’s the Servant King, and so it doesn’t feel appropriate to put him next to luminaries such as Churchill and Nelson. Homeless Jesus has the power to be prophetic, to speak truth to power, to remind us that whatever we do for the least of these, we do for him.

I’ve signed the petition to get the statue displayed in public. Because we don’t need a stained glass Jesus, we need the disruptive Jesus, Jesus of the margins, Jesus of the nail scars, Jesus of the benches and the doorways.

We need a homeless Jesus.

Autism Parents and the Church: Exile

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There are times when raising children with disabilities is like walking through a wilderness, like an exile from the communities around us, to use a biblical image.

That’s not because of the children themselves, nor is it the disability. Don’t get me wrong – things get tiring and frustrating and nerve-shredding – but it is what it is, and acceptance is the first step you have to make in getting your family through this. No, the Wilderness is something else.

The Wilderness is all those people who think you’re exaggerating your experiences, or even that your child’s difficulties are all in your head.

The Wilderness is filling in brutal government forms that ask you to justify every scrap of support you get while writing down, in black and white, every single negative aspect of your child’s life, balanced by none of the positives, the successes, the joys.

The Wilderness is reading of the desert experiences of people with disabilities who lost their support and saw no other option than to take their own lives.

The Wilderness is when people think you must not be praying hard enough for your kid to be healed.

I’m a step-dad, and coming into this late, these things have shocked me. I was naive enough to believe that support was there for those with disabilities, that people were treated with, if not respect, then with a sort of well-meaning bumbling empathy, the sort of clumsy sympathy I’ve found myself doing over the years.  I’ve learned the hard way that there’s a darker side to all this: when you’re stuck in the Wilderness, there aren’t that many people who’ll help you find your way out. Sadly the church isn’t always great at this either; some of you reading this feel like exiles from your local congregations, through no fault of your own, through no fault of your kids.

I’ve written about this a lot over the last couple of months, and I’m probably sounding repeating now. I think all these pessimistic posts, and the more positive ones sitting there in my notebook, are a way of dealing with the experience of exile.

See, there are different responses to being stuck in the Wilderness. Wandering around lost is one, and an understandable one. But it’s not sustainable; sooner or later you’re going to starve. So maybe the first thing you do is buddy up with others stuck in that same Wilderness to see if you can find a way out together.

Or you can figure you’re going to be there for a while, so you start to adapt to the terrain; the image of The Autistic Gardener team making a weird oasis in a desert wasteland is stuck in my head; creating something new is sometimes the only way to survive.

(One of the first things we learn about God is that he’s a creator.)

Or, by ingenuity and good navigation skills and sheer bloody mindedness, you figure out how to escape the Wilderness, how to find your way back to civilisation and convince those you find there to provide signs and fences and provisions and shelter to prevent others from getting lost in the desert in future.

But here’s the thing – whatever path you end up on, God’s always been in the Wilderness, wandering with his people. He may light the way out in a pillar of fire, or he may just pitch his tent next to us – either works. But he’ll be there. That’s one of the things that need to be accepted, even though it’s damn hard at times.

Still, the church isn’t just a monolithic organisation, nor is it just a bunch of local congregations singing and holding coffee mornings. It’s the Body of Christ and we’re all part of that Body – whether we’re disabled, whether we’re feeling lost, we are the church through our relationship with Christ.

And so I have to believe there’s a way out. Because we’re part of the Body not brcause someone gives us a membership ticket but because Jesus says we are. Because while I’ve had many doubts in my life, and been eaten up by resentment, I’m sure that God loves my kids, and I have to trust he loves me too. And while his church may sometimes, either by mistake or through willful ignorance, be silent, the God who camps in the desert won’t be.