The Story and the Person Behind the Article
The way my latest article on disability has been picked up in the last couple of days has been both wonderful and terrifying in equal measure. I’ve been trying to keep up with all the comments and shares, but failing miserably – social media is not my gifting!
It has brought many different responses. Most have been supportive and agree that it’s tough out there when you’re disabled, many people have been shocked to the point of disbelief. Many have said that maybe I should teach people what to do rather than complain. Some feel I’m too harsh and angular in my approach – a bit too much of an activist! I’ve also had some ‘this disability has it worse than that disability’. Well – here are some answers and a few more stories: I’ll start with the last one. This isn’t a competition. No matter what your additional need or disability, if you feel unwelcome or cannot access what you need - then the disability you have is irrelevant.
On teaching people – I’ve been writing and training about this stuff for over 25 years. I have analysed the uptake on my writing and found that stuff I write about children’s work and ‘theology for those who don’t generally do theology’, I get a higher readership. My stuff about disability in general only gets read and shared by those who are already convinced of the problem. My writing about children and additional needs fairs slightly better, but not much. This is why I’ve been a little overwhelmed by this response. The comments on being angular and an activist may be right about this post, and the occasional one in the past, but here’s what you might not know about me: I’m a shy introvert, that doesn’t like conflict. I always err to the gentle side because that is my character – I prefer diplomacy over angst. Many in the world of disability and Church think I’m too gentle most of the time!
But I've had to get mad to get this message out there. Angry or sensationalist writings are generally read the most.
If you are in a church that welcomes all and adapts to all in the sense of true belonging – this is a wonderful thing – relish it and be thankful. But remember that your situation is a rare thing.
If your church does it well because you are a small fellowship – again, give thanks! But not all small churches do it well. In my timeline this morning I had a post telling me that smaller churches get it right, and just below that was a post saying their (small) church had made a decision not to welcome a child with additional needs because they were too small as a church to cope.
So – there is no easy answer to this. It's a mixed story weighted to the not so good. The biggest need is compassion followed by empathy. What I didn’t say in the article is what my disability is. For years it was a hidden one until it got worse. I am now a wheelchair user with a visual impairment. My disability gives me various sensory issues too (I struggle with very loud noise, bright light, strong smells and draughts). So I don’t fit neatly any where on the disability spectrum.
But I am also in ministry – and there lies a whole new can of worms I didn’t even cover in that article!
Here’s some of the things I get told/asked (All in a Church/Christian context):
“People in wheelchairs get fat, you need to stop using it so often.”
“People like you shouldn’t be let out”
“You’re too pretty to be in a wheelchair”
“Oh, you’re using a wheelchair – have you given up ministry now?”
“You should stop gallivanting around the country now you're disabled and retire” (I’d been disabled for 10 years before this, I’d just started using the wheelchair….and too young to retire!)
“Your Husband must be a saint” (Yes he is theologically speaking – and I think he is for different reasons!)
“You’re a bad example for ministry”
“You obviously haven’t forgiven someone to still be disabled”
“It must be a generational curse”
“Why don’t you want prayer for healing? Everybody wants that!”
Whilst rubbing my arm (causing more pain) “Oh you poor thing, you’re such an inspiration” (I was an inspiration because I’d managed to park my chair without running anyone over….)
At a festival where I was on the leadership team, with the person in front of me demanding to see one of the ‘leadership team’ “You can’t be on the leadership team – your disabled”
"I wasn't expecting the speaker to be disabled"
"You were quite a good speaker for a disabled person"
And the one I get from Christian and non Christians alike – equally shocking from either: “How do you ‘do’ sex?”
I could go on to the many meetings and theological conferences I have been unable to attend – without even an apology from those organising them.
This is my life – and the life of many others. But I’m grateful everyday for what and who I have in my life. I truly believe that God is good – even when life sucks.
I am supremely grateful to all the people who cheer me on, pray for and support me and tell me to keep going. I’m also thankful for those invited mentors who challenge me, keep me accountable and show me different ways of thinking. We all need people like that!