Friday, 31 January 2014

your call is very important to us

Earlier this week I was called at home by someone doing some research on behalf of the MS Society. They wanted to get some feedback about various services that I'd accessed.

Now obviously I'm DOWN WITH THE CAUSE. But they called at half-past six. I'd not long come back from work, my parents had just brought Evie home after looking after her all day, and we were in wind-down before wine-time mode.

So I asked if they could call back. They said fine.

At half-past six the following night they called again, right in the middle of the wind-down once more.

I explained that I'd been through this the night before and that I'm more than happy to do any survey for the MS Society, but could they email the questions to me?

No, it had to be done over the phone.

I explained to the (perfectly lovely) caller that this wasn't ever going to be a good time of the day to speak. Work, child, etc.

It's (mostly) a finely-tuned machine (sometimes). 

So she said (again, she was perfectly lovely about it), "Ok, I'll call you in the morning".

To which I replied, "But I'll be AT WORK". 

I'm probably being insanely over-sensitive. And I know the society published findings which said that “It is estimated that between 23 and 32 per cent of people with MS are in employment”- so basically only a quarter of us are still in any kind of work. 

But still it saddened me that the person calling - on behalf of the MS Society (not from them) - would make the assumption that, if a person has MS and they're talking about work, there's NO WAY that work will be full-time. 

I've been a bad mood about this ever since - if this is the attitude of people working in the name of one of the biggest MS charities in the UK, will the fact that people with MS don't feel able to remain in employment become a self-perpetuating prophecy?

People who are newly diagnosed could read these figures and go, "OK then, I might as well give up now". And I do appreciate that some people have a considerably greater level of disability than I do currently.

But still, it's not THEIR FAULT that they're disabled. 

What is society going to do to make them feel that they have a RIGHT to contribute and be fulfilled, doing whatever it is they want to do? * 

In my head I keep going back to the different models of disability - it's not the individual's fault, it's the Disabling World. 

(* the irony is that I HATE work, have never a had a completely fulfilling job, and would happily jack it all in tomorrow if my numbers came up. But still... Raah!!) 

I'll stop working when they stop issuing plush anniversary box-sets of key musical-texts of my young adult life - it's not going to buy itself now, is it?

3 comments:

honeysuckle said...

How many people who work for 'disability 'or 'illness' charities actually have the eponymous 'disability' or 'illness'?

Once listened to the radio programme 'In Touch' for visually impaired people and was stupefied to learn that (at that time-before I'm sued) there were no, you know, visually impaired people working at the RNIB.

Maybe the same goes for the MS Society or perhaps the perfectly lovely caller had a fixed number of calls she had to get a result from.

Hurrah for shift.ms.

swisslet said...

“It is estimated that between 23 and 32 per cent of people with MS are in employment”??

Fuck. That's a depressing statistic... but I'm calling bullshit. I know that lots of people are terribly affected by MS - of course I do - but I find that number very hard to believe. So there's something like 100,000 people in the UK with MS, right? And we reckon that only 25,000 of them are in work? MS is such a nuanced condition that is both cumulative and different in everyone. How can they be so confident of that stat? I think it does more harm than good to toss numbers like that around
FWIW, I think you're being a little over-sensitive too. They try to deliver parcels to everyone during the day too, even though most of us are at work. I think it's a statement about how brainless most of these organisations are generally, rather than a reflection on anything else.

As for boxsets....I'm hungrily eyeing up the Blur boxset and notice that Suede are re-releasing their albums on vinyl this month too.

ST

stevedomino said...

yeah, my bad - over-sensitive to a fault, that's me!

i think you hit the nail on the head with this:

"They try to deliver parcels to everyone during the day too, even though most of us are at work. I think it's a statement about how brainless most of these organisations are generally, rather than a reflection on anything else."

apologies for venting, it's probably because the Slint box-set i linked to is SO BEAUTIFUL, and it's so very expensive!

i swear that statistic is true - they talked about it a lot during MS Awareness Week last year - and the MS Society is redoing the Working Yet Worried toolkit and that stat is part of the proposal - see http://www.mssociety.org.uk/ms-research/projects/services#8