Monday, 29 September 2014

biting the hand that feeds

Long-time visitors will know that I am a bit of an arse and as such I have a number of pet-peeves – including but in no way limited to:
  • People who moan all the bloody time [a bit rich, Mr Domino?]
  • The bloody Spoon Theory
  • Inspirational aphorisms  - “I have MS but it doesn't have me” (oh really? Is this on day two or day three of your steroid infusion?)
This week, I've hilariously added the MS Society to the list...

I fully appreciate that the charity obviously does a huge amount of good work for people like me who have been landed with this crappy condition. But sometimes I do get cross with them.

The other day we received a copy of their Christmas catalogue and there were a number of items sporting the slogan, "I'm not drunk, I have MS".

I admit – in the early days of my diagnosis, I might have had a bit of a rueful chuckle at that. But now it just gets my back up.

By linking being drunk (a potentially pleasant experience which doesn't last forever) with MS (deeply unpleasant at times, no cure at present) are we not belittling ourselves and the condition we struggle with on a daily basis? Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what's the big deal?

So far so nit-picky.

But my real problem with it is that as a statement it's arsey and juvenile – and not a little confrontational. Yes, some people need educating and they shouldn’t jump to conclusions about people's situations – but is being so "in-their-face" all that useful?

It links to my thoughts about moaning above – like the Sp*on The*ry, this kind of thing just makes us look all whiny, complainy and weak. And speaking personally, if I'm talking to someone and they try to lay something on me in a similar fashion, nine times out of ten I'll make my excuses and avoid them.

I get that this kind of thing could spark a conversation which could allow us to advocate for our condition – but the slogan is on items in a Christmas catalogue. If I presented them to (for example) my mum or even work colleagues, they would think (with some justification), "oh God, Steve's banging on about his MS again – does he really think we've forgotten? We know. We wish we could do something about it."

On the whole, the people who will see this statement (on a T-shirt or a pint glass) are already on our side – we're preaching to the choir, to the people who already have our back. 

It's not as if a t-shirt is going to alter the perception of someone who makes a daft comment when we're staggering down the street – that level of education is somewhat bigger than a bottle opener. And yes I know the conversation has to start somewhere, but is this really as sophisticated as our argument gets?

I'm really not trying to pick a fight with an organisation which does so much good. But I've seen the kind-of passive-aggressive attitude implied by this slogan a bit too much in the MS community over the years. People who almost rear up to offload their symptoms in the opening rounds of a game of Disability Bingo, scoring points when they find out that I still work full-time.

And I'm not denying the cathartic power of this phrase when we're feeling a bit crappy - but on a t-shirt? As a major campaign slogan for (arguably) the leading MS charity in the UK?

One final point which my wife made - if someone is walking down the street and their gait is so poor that they look inebriated, maybe they should be using a walking stick? Or some other kind of mobility aid?

I've talked on here in the past about my initial problems with using my stick. Maybe the MS Society's time might be better spent destigmatising (certainly amongst younger people with MS) the use of sticks / walkers / wheelchairs.

FINALLY finally, here are a couple of alternative slogans – feel free to appropriate!
  • Myelin, Mai Tai… Your round [needs more work but shows promise]
  • I am drunk AND I have MS! [probably my favourite - especially if it says Let's Party! on the back]
  • I have a chronic neurological condition, therefore I drink [a bit long for a t-shirt – maybe a scarf?
And of course, my old favourite - I have MS (it is what it is)


Ms. CrankyPants said...

Ahem. I am wearing that tshirt RIGHT NOW. So this is a bit awkward.

Nah, not really. There are times when I am in a store (always in a store) with narrow aisles and I lurch around and think, "Someone must wonder if I'm drunk. F*CK, I wish I had a tshirt that would explain everything."

There's a practical problem with this tshirt: you'd have to either wear it, like, EVERY DAY, or buy seven of them to last a week. Pretty sure more days than not I'm teetering close to a wall, co-workers, or crystal vases.

p.s. LOVE the "I am drunk AND I have MS" tshirt idea. If you make that shirt, I'll buy it.

p.p.s. "Let's Party" makes it totally awesome.

swisslet said...

Count me in for the "I am drunk AND I have MS" t-shirt. Brilliant.
I've just had a rant about a "post of the week" that shift MS pulled out last week on their facebook page. It's probably wrong of me to judge, but it just came across as the worst kind of victim moaning about how "normal people" don't understand "us" and how MS steals and defines our identities.

Look, I know people are worse affected than me, but don't fucking presume to speak on behalf of all sufferers of MS, will you? Also, it only fucking defines you if you let it. I have my bad days, but personally I like to ramble about all sorts of other shit.


I'm over the MS Society too. Not as much as I am Macmillan, who seem to be like the Tescos of charities, stealing everyone else's ideas and making off with them because they have the clout to steamroller everyone else.... but I'm personally getting a lot more from the MS Trust.. who, as you know, are a smaller and more personal charity. That christmas catalogue pretty much takes the biscuit though, eh?

I'm just old and grumpy.

stevedomino said...

Ah, my grumpy sister & brother. I'm so glad to have you with me! It would be a lonely road without you both.

Incidentally, I'm with you Swiss about the MS Trust.

And I tweeted about this blog when I published it, tagging the MS Society. No comment so far!

swisslet said...

They're too important and busy, Steve. I applied to run the London Marathon with both the MS Society and the MS Trust. The Trust got back to me quickly and personally and made a case for how they would love me to run for them. Nothing from the MS Society at all yet, not even an acknowledgement. Guess who I'm running for. Plus they have showers and massages at the finish.

stevedomino said...

Ahem - I'm sure the massages had nothing to do with your decision...

There's always been something vaguely lilly-livered about the MS Soc - I remember they wouldn't retweet my posts because of the MILD SWEAR in the title.

By the same token, they seem REAL eager to retweet (without comment) anything with a #MSsucks hashtag.

And when I was first diagnosed they were the first place I looked. Do they represent me now?

I guess I won't be getting an MS Award anytime soon...

Ms. CrankyPants said...

Back at you!

-Your Grumpy Sis

swisslet said...

Shift MS put a link to this article on their Facebook this morning.

I like the guy's attitude, but the comments on the post were awful and passive-aggressive:

"this and more is possible with relapsing remitting no biggy but well done for climb"

"Firstly well done to Stuart for claiming up a mountain. However is it helpful to highlight something the vast majority of MS sufferer's could literally only dream of doing no matter how much positive thinking they use .if your legs do not work , they do not work. But again well done"

Ugh. He only has relapsing-remitting MS, so fuck him and fuck his mountain. Wanker.