Thursday 25 October 2012

once more unto the breach..?

So I eventually received a response to my LinkedIn fury from the other week.

Actually, I got a response over a week ago - since then I've been slowly chewing over my options.

First up, I got this response who from the guy that prompted my initial message (hereafter known as Mr Reasonable):

Steve, would that the person in this instance behaved exactly as you do, articulating your needs in response to a particular situation to enable a service provider to ensure that one is able to enjoy equality of access to a service. As you say in this instance, no opportunity to understand how one might offer a service was offered, only a citation of the DDA which could only be addressed by immediately granting tickets ahead of everyone else. We have mechanisms in place to respond positively in precisely the situations that you personally describe but were never given the chance. Reasonable?

Fair enough I thought (but I don't really get why this comment gets 'thumbs' - what gives? No 'thumb-love' for the righteously-peeved disabled person?)

Anyway, a couple of minutes later, this appeared:

Sadly as in other aspects of life there are many who abuse disabled access, Birmingham NEC has introduced charges for disabled parking for this reason. The other night I attended the cinema and watched a middle age couple park in the nearest disabled parking bay, place a disabled badge in the wind screen before rushing away up a stopped esculator, I assume abusing use of non present elderly relative/child parent badge?

Gaah! Just When I Thought I Was Out, They Pull Me Back In!

So this is where we are – I’m weighing up whether I really need to get myself embroiled in this.

Below is the response that I would send if YOU, DEAR READER deem this to be a sensible use of my time:

Matthew - yes that sounds reasonable.

But as we're all – in one way or another – working in Customer-facing environments, and as some of us may also be publicly-funded, my issue was with the language you used in this group - which implied an attitude and a lack of awareness that was unfortunately mirrored in Roger's subsequent comment.


I know this is a closed forum but (ta-daah!) I’m a disabled Marketing Professional and I'M reading it so there's at least one of us.

It took me a long time to get up the courage to use my disabled parking permit and i do get the odd dirty look when i park in a disabled bay. I’m not a wheelchair user yet and on my good days I can pass for 'normal'.

People’s conditions can fluctuate - I know that mine does. Also DISABILITY does not automatically mean WHEELCHAIR USER.

However, I am entitled to use my parking pass without being judged or (God forbid) being abused if i walk into a building normally after parking.

If someone holds a lift for me, I’ll try to get to it as quickly as possible - that's just being polite, isn't it? Should I hobble slowly from my Blue Badge space (ideally using my walking stick for added effect) so people don't assume that I’m abusing the system?

Or should people:

a) Give me the benefit of the doubt in a 'there but for the grace of God' kind-of way
b) Mind their own business

I know this is wildly 'off-topic' for this group. BUT we should all be careful about the language that we use, even in non-public environments.

So what do you think should I publish this comment? Or should I let it alone?

Thursday 11 October 2012

benefits and MS | Multiple Sclerosis Society UK

MS Society awareness talk: benefits and MS | Multiple Sclerosis Society UK

This is another talk we're going to be at - according to the website, it wil feature, "An overview of disability benefits including Disability Living Allowance/ Personal Independence Payment, and Employment and Support Allowance".

Incidentally, two days after my LinkedIn rant, not one comment on the original thread!

Crazy - these people work in the relam of Customer Relationship Management! They should really have the balls to respond, don't you think?

Tuesday 9 October 2012

i love the smell of righteous fury in the morning

Always nice to start the day off with a rant!

I'm fairly active on most social networks, one which I don't necessarily see that much of a point to is LinkedIn - have I totally got this wrong but isn't this basically just Facebook-for-career-minded-adults?

Anyway, I'm in a number of groups that are relevant to my work - one of them, which sounds as dull as ARSES, is a closed-group called Thinkaboutpricing.

A DISCLAIMER: the guy running this is Tim Baker, who is a bit of a god in the UK Arts scene - I've worked with him occasionally over the years.

Earlier today, I picked up on a thread which was responding to an article in The Guardian about the concept of "Paid-for Queuing" - which is surely the only outcome from tickets for high-demand events only being available on the day of a performance, and which opens up all kinds of issues as far as accessibility is concerned.

One comment went thus:
Full Comment: "We had an interesting take on disability and queuing when we secured Michael McIntyre to perform at The Maltings. One person claimed discrimination because their condition did not permit them to queue. So, I know know that there are at least two types of claustrophobia: there is one type that stops someone from attending a queue, taking a numbered ticket and sitting in a warm spacious room until their number is called and then there is the other one which permits the same person to come into a jam packed 100% sold out venue and happily negotiate crush bars and corridors. funny that!"

I immediately got on my high-horse - I think it was the jokey little "funny that" comment at the end, which is a particularly pernicious kind of disabled-person bashing, is it not?


Speaking as someone who has a chronic disabling health condition (MS), i'm sorry to say that i find the last jokey comment a little ignorant and misguided. i sincerely hope i'm misunderstanding you!  my condition fluctuates, so i can find standing in long queues very difficult. but i also like to see shows / gigs, etc - just like a NORMAL person.  and i don't feel that i should have to stay away from events where there's a danger that they might actually sell out!  my trips frequently necessitate a degree of planning beforehand for me - getting as much information as possible about the venue / parking / facilities in advance. and i will frequently book tickets at the ends of rows so i don't succumb to feelings of panic or claustrophobia.  (as an aside, i would probably book online wherever possible to avoid queuing.)  in this particular situation, speaking personally I don't think i would automatically jump to a 'discrimation' charge (as the potential ticket-buyer).  most likely i would contact the venue to discuss my condition - this has been particularly useful when booking for outdoor cinema screenings for example.  your comment is one step away from accusing disabled people and those with chronic health conditions as 'fiddlers' and 'benefit scrounging scumbags' - i think we have to face enough discrimination in the outside world (particularly with the current government) without it infiltrating the supposedly liberal and open-minded world of the arts.

Did I overreact? I don't think I did.

Thursday 4 October 2012


One of the many handouts we got at the Working With MS day the other week was one called Shrinking The Monster. Here's the description from the MS Society Website:

Written by Jo Johnson, a neuro-psychologist, this workbook can help you recognise, name and tame the ‘MS creature’ who takes up residence, uninvited. This way of thinking about your MS doesn’t suit everybody, but many people who have used this approach seem to find the idea of shrinking the monster increases their feeling of control. Drawing on cognitive behavioural therapy and narrative therapy, Shrinking the monster tackles serious, personal issues, but can be used and discussed with the whole family including young children.

Now I'll be honest (and I'm speaking as someone who's a bit of a newbie-convert to CBT), when I started looking at this I didn't think it was for me.

But when Emma looked through it, she got a lot out of it. Plus she named my monster: Gaucho.

This comes from my unholy interest in and fondness for the smooth jazz-rock stylings of Steely Dan. I'm not proud, I'm a man of a certain age.

Please Note - I've never had anytime for so-called 'Guilty Pleasures'. To my mind, you either like something or you don't. End of.

Emma thought the lyrics of their song Gaucho summed up the feeling that MS is a slimy, unwanted presence in our life - something ugly and creeping that is always there, skulking in the background:

Who is the gaucho amigo
Why is he standing
In your spangled leather poncho
With the studs that match your eyes
Bodacious cowboys
Such as your friend
Will never be welcome here...

I quite like this. Especially the fact that this is one of my absolute favourite Steely Dan tracks.

Talk about putting a positive spin on my condition!

For the last week I have been living alone. Emma and Evie were offered a free holiday, and I thought that I'd taken a lot of holiday in August. So off they went.

It's been cool to spend time catching up with friends but I'm very much looking forward to seeing my girls!

Monday 1 October 2012

mind = officially blown

Just a short post to relate an interesting thing that happened at my last CBT session.

NB - I feel the need to couch some of the following in vague terms - apologies if this reads a bit weirdly.

I work in Arts Marketing and one of the things I work on is an annual arts festival. This year's festival was last week.

A couple of days later we received a complaint from a member of the public who had attended an event with her young son - just to ramp up the complaint a little further, her son has a developmental disability.

Now whenever I or any of my colleagues receive any messages like this, we automatically go straight into "mega-apology-mode". Then I read her email a bit closer.

Her complaint was (essentially) that the event, which took place at night, was in a location that she didn't know. And that being in unfamiliar surroundings, amongst crowds of people, late at night, can make her son panic.

HUMBLEBRAG - for this particular event, we got an estimated audience of 25,000 people.

So I pretty much spent all of last week completely full of sympathy for her son - who will undoubtedly have had a SHIT time - and raging about his mum.

The basic thrust of my rant(s) was as follows:

With my relatively low level of disability, whenever I go anywhere unfamiliar, I PLAN like it's a military operation.

How am I going to get there? Will there be parking? If I'm getting a lift, where am I going to get dropped off / picked up? Have I got my stick / orthotic support? Where are the toilets and where can I sit down?

Y'know, that kind of thing.

And if she's her son's primary care-giver, she should really have done (at least) that level of research in advance. If she had, she might have realised that this particular event was not the best one for her to attend.

So I relay all of this to my therapist. And she asks, Why am I so upset about this? If anything it sounds like she's deflecting her own feelings of letting her son down, I'll probably never meet him. So why have I been so angry?

"Are you just angry about the fact that you feel that YOU have to plan that much before you leave the house?"

So she totally called me out on it!

This sort of revelation is probably not that big a deal to anyone who has had any kind of therapy before, but my third-eye was well-and-truly squeegeed.

It goes back to something we talked about at the MS Seminar the other week: I need to pick my battles.

And I need to examine my motivations for involvement in any potential skirmishes more closely! The mind is a slippery beast indeed.

Shaw Taylor says....


a word of explanation for our younger and more 'non-English' viewers:
"Keep 'em peeled" was the catchphrase from 'Police 5'.

Police 5 was a pioneering, early version of Crimestoppers and Crimewatch, presented by former continuity announcer Shaw Taylor and produced in association with Scotland Yard. Local versions were also produced by ATV and then Central and also Southern Television.

image and description from Ultimate LWT