This is an old blog from 2014 (and an old website) that I thought I'd repost here. I still hear similar experiences, so it's worth saying again:
I’ve thought long and hard about writing this blog post.
It’s a vulnerable one…. and I hate being vulnerable.
But it keeps screaming at me to be written, and this is my third attempt at writing it!
It stems from a seminar that Steve and myself did at Spring Harvest called “Coping With the Onset of Disability”. I wasn't totally sure about doing it, but as I've quoted in another post - God appeared to think it was a good thing!
The seminar seemed to really connect with those who came - not because we told them how to cope, (I wouldn’t presume to!) but because we simply shared our story.
In these seminars you get a mix of those with a disability, the family of people with disabilities, and pastors. It’s difficult to know where to pitch a seminar like this with that mix, but we prayed that our story would speak to all and give what each person needed to hear.
Apparently it did.
I’m a great believer in using story to teach and encourage…. well, I’m a children's worker after all!
Steve spoke about what it is like to be the carer. (Now called a “Personal Assistant”!)
I spoke about what was helpful for me, and about comments I’d had over the years that were decidedly unhelpful. I also spoke about heavy handed theology from both extremes and about how body image can affect some people who have disabilities.
Tackling how disability can affect you spiritually was a hard one!
The amount of Bible verses, ripped out of context, I’ve had quoted to me has been astronomical, and battling through piles of weird theology people quote has been exhausting.
Even with my normally happy disposition and belief in God, there are times when I have to say “What?! Enough already!”
But even that doesn’t quite cover it. The best I could come up with was a line from the Leonard Cohen Song ‘Hallelujah’. It says: “It’s a cold, and it’s a broken Hallelujah….”
But what makes my praise cold and broken?
It’s not my faith levels! But it can be my pain levels….
Sometimes it’s grief for what I have lost to these diseases - and the fact that some folk think I should be “over it by now”
It’s quite often the insensitive comments I get…. of which there are many.
Sometimes it's the list of miracle cures I'm told about!
It’s sometimes that fact I am sick of the labels people give me:
‘The Wheelchair lady’ (I have a name you know!)
‘The one that shouldn’t be allowed out’ (What?!)
‘The fire risk’ (Yes I really have had that one!)
And many more.
Sometimes it’s getting used to a new body image. (I shared in the seminar that I feel both ugly and self conscious when I use my wheelchair). It’s sometimes those accusing thoughts that I’m not really disabled, and one day I’ll get found out. (Not true - but apparently I’m not alone in getting these ridiculous thoughts)
It’s not the fact I can dance and run in my dreams (I’m not alone in that one either!)
But on reflection - it’s partly the guilt cycle that I and many other Christians who are disabled go through on a weekly, sometimes daily, basis.
Guilt for reacting to things in the list above - because we’re Christians and should know better.
Guilt about shouting at God (Some flavours of church really frown on this) Guilt because we haven’t been healed…..(Apparently some feel that’s due to our faith levels)
We are told in scripture to be content in whatever situation we find ourselves in…..
Yes, we are allowed to challenge unfairness, and we shouldn’t put up with some of the stuff thrown at us, but because we have been told to be content, we feel guilty when we do challenge or comment. (Or use the gift of sarcasm as I do!)
When we can’t worship because what we need is not available (The ability to see song words, hear what is said etc) we feel guilty for getting irritated...Rather than being content.
When the language used excludes us - not a rude comment about disability, but it shows we’re not noticed….. apparently we’re not supposed to say “Oh no we won’t” when the worship leaders says “We’re all going to stand and sing…..” and then we feel guilty for thinking it....Rather than being content.
When we hear a rave review about a theological book only to get excited and then find out some Christian book sellers don’t put books into ebook (large font!) formats (especially theology books!) - despite repeated requests.
Then we feel guilty about complaining - because we’re supposed to be content. (And disabled people can’t understand theology….. sorry that’s my sarcasm gene kicking in again!)
When the church is accessible from the outside - but less than accessible inside…for many reasons. We feel guilty because more than one of us wants to sit in the only accessible place in the church where you can see and sit comfortably…and WE want it. We should give it up to someone else and sit in another seat that will cause pain for the whole service...and be content.
Most times I can rise above all these things and more, but there are days when I can’t. Usually only Steve is aware of those days.
And on those days my worship turns into a cold and broken Hallelujah. And you know what - God doesn’t frown and point an accusing finger when it does. Thankfully - He ‘get’s it’.
I am content - But I am not content with the way the world sees and treats disability. I am certainly not content when the church does the same.