Friday, 4 April 2014

Cannon balls are dangerous

Seriously. They are. Don't ever even touch them.

It wasn't my fault. I was at The Museum of Somerset yesterday and in one exhibit they had a sword and cannon ball which you could handle.



My wrist is still whining. And every now and then it yelps and I think "OW! what did I do to deserve that?"

Followed quickly by a sheepish grin.

It was possibly entirely predictable and slightly silly. But I'm not entirely repentant. How would I have known how heavy it felt?

Tuesday, 18 March 2014

Yesterday I took my boots to visit the House of Lords.

Yesterday I took my boots to visit the House of Lords. My hot pink Dr. Marten boots.

They were a little bit disappointed because the House of Lords entrance is small and dull compared to the House of Commons entrance. Instead of waiting around in a vast area of catherdral like splendour, we waited in a pokey little waiting room that resembled an underground train at rush-hour. Well, almost.

But as my boots received several compliments, and I was armed with my cooling vest, we didn't mind too much.

We were there for the 'Pain Champion Award' presentation. An award for someone making an exceptional contribution to helping the pain community, which was created buy Pain UK (I am on the advisory board of Pain UK, and hoping to do some awareness/fundraising stickmen work with them too) in conjunction with the British Pain Society (BPS) and the Chronic Pain Policy Coalition (CPPC)

The winner was Peter Moore - he's definitely earned it! As a patient learning to live with Chronic Pain, he came up with and developed the 'Pain toolkit' It's a really good, simple, straight forward and empowering approach to pain management, which has won a huge following and is now used across the globe. I highly recommend taking a look. They're even going to bring an app later in the year (or was it next year?)

And I was delighted to find that Peter himself was a down to earth, plain speaking kinda guy with a great sense of humour. And I was delighted  that when I said I was from Stickman Communications he instantly knew who I was.

My boots initiated several conversations as people approached me with 'I love your boots!' - or confessed at the end of the conversation that they had come over because they'd seen my footwear.


Who knew that pink boots would help me network effectively? They never stopped, even on the train home!

All in all a great day, and I look forward to working with Pain UK in the future, helping to raise both public and professional awareness and understanding of pain and it's effects.


Wednesday, 12 March 2014

Disability, ability and false assumptions

As some of you know, I was recently in a dance performance 'Moving with the Times' at the Pegasus Theatre in Oxford. I'm hoping to get some photos and video of it eventually - rather than ones taken from my rather inferior camera. But this blog isn't about the dance, it's about what I learned in the process.

It was, for me, a truly beautiful and unique experience, because the whole piece was choreographed around my physical limitations (lots of floor work, some lying down doing nothing, minimal 'arms above head', etc.) And although other dancers occasionally did things outside my capabilities, the net result was that some viewers didn't realise that I was a wheelchair user until the end - and I was judged as a dancer, not as 'isn't she good for a disabled person'.

And during it I learned a lot about disability, and inclusion, and how easy it is to assume.

I am hypermobile (i.e. overly flexible). While this can be highly inconvenient when attempting to pick up a kettle or walk in a straight line, when dancing it can also enable some beautiful positions that non-hypermobiles simply can't do, and means my natural mode of moving is different.

I started out with the assumption that all 4 of us in the piece should be able to do everything I could - because I was disabled and they weren't. My suggestions were unthinkingly from my point of view. When it concerned the moves I was to make, giving a frank response as to whether they were doable was important, but in the process I realised how many little things I assumed that I now realise I shouldn't have.

Like socks. They were really slippy, which for me was a huge plus as it meant I could dance with maximum floor contact and slide rather than 'step' - minimising strain on my joints and maximising proprioceptive feedback. Perfect. It wasn't until the dress rehearsal that I realised the other dancers struggled with them at times - their brief patches of standing choreography, and their default 'travel' being step rather than slide meant the socks were a hindrance, and something they had to concentrate on compensating for.

I, in my ignorance, had never thought of that.

And then there was the 'snail' move - hard to describe, but a move using a lot of back and shoulder strength and control, and involved being in a 'press up' position then sliding the feet towards the hands with the backs of the feet on the floor. With my hypermobility and years of physio and wheelchair use it was totally easy for me, and quite comfortable. But for some others it was a totally alien move and really rather tough.

Again, it never occurred to me that others were having to make extra effort to do stuff that was totally normal for me.

So I have made myself a promise: to cut people some slack when they make false assumptions about what I can do, because there will be times when I need them to return the favour.

Wednesday, 26 February 2014

Going Global....

Wow!

Just a two months ago, my products being stocked in the USA was a long term plan - maybe 3 years, possibly 5.

Then suddenly it became a 3 month plan!

I have a stockist lined up - although we are still finalising the details so I can't post specifics yet - you'll have to watch this space. (Needless to say, I will be telling the world somewhat enthusiastically once everything is sorted)

But in the mean time, any US people who would like to be able to buy my stuff in the US please let me know which items you want most. (via comment here, twitter (@stickmancrips), facebook or via my website) The full range won't be stocked in the US initially, but it would be nice to be able to stock the 'Most Wanted' first. (Don't worry, expressing an interest or product preference will not be seen as 'promising to buy' or 'placing an order', but it may mean that you are contacted when the products you suggest are available in the US.)


Who would have thought that those stickmen I first drew to explain my conditions and keep myself entertained during a hospital stay would have grown into this!

Monday, 17 February 2014

A busy week!

Last week was busy. Very busy.

Not only am I rehearsing 4 hours/week for "Moving With The Times" (dance choreographed by Mame Yasane) - which of course takes lots more than 4 hours of energy despite my pacing and kipping on the floor several times mid-rehearsal, but I also released some new keyring cards designs.

They were all heavily influenced by requests and feedback from customers. Perhaps the most requested of these is the 'EDS and Local Anaesthetics' card.

Many people with Ehlers Danlos Syndrome struggle to be believed about local anaesthetics being less effective than in most people. I mean, how do you make a dentist believe that you are stating and known medical fact and not just being a paranoidly over-anxious patient? And even if you do hand them medical info of the internet, how often is the response 'well you can't believe everything you read on teh net!'? Fortunately the Hypermobility Syndromes Association has been is Information Standards Certified (meaning that the evidence base behind information provided has been scrutinised to a suitable degree and the NHS is confident that it is up to date and accurate.) so I was able to create a card which just had the basic information - but also refers the reader to the HMSA's IS accredited information - meaning a better chance of being believed.

I am really glad I finally got around to writing the Chronic Fatigue Syndrome / Myalgic Encephalomyelitis card - because it must be one of the most misunderstood conditions out there.

I particularly like is the ASD and eye contact one - I hope it makes a difference to people.


But my overall favourite is the 'Heat Intolerance' - I suspect because it is such a major issue for me personally that I can't wait to have to use it.

Friday, 14 February 2014

What is a perfect venue?

(Originally written for Really Useful Stuff)

The trouble is, it's different for everyone - some prefer modern, some traditional, some want alcohol in abundance, others want a quiet cup of tea.

In this day and age, our ever-present internet solves the problem - we search, look at photos, menus, maps, details. Then decide. Then book. Simple.

Unless you have any non-average access requirements. Then it's endless phone calls with lists of questions, waiting for calls back because they aren't sure, and hoping the information eventually given is relatively accurate and not missing anything essential. So few websites have any accessibility info, but it would make SO much difference to us customers with disabilities.

It doesn't surprise me. I am fully aware that for many business owners, especially small businesses, disabled access is a complicated, technical, confusing and expensive legal thing. And having sat through a 'Disability Awareness Course' and 'Equality training day' - quite frankly, I understand why. (This was actually said. I kid you not.)

[image description: stickman lecturing "There should be tarmac paths to all remote beautiful locations! To disagree is discriminatory." Class thinking "that's just silly." Wheelchair user thinking "..but I don't want tarmacked countryside. Why not an off road wheelchair or a monthly day with firefighters to help you?"]

But I bring you good tidings!

It's actually straight forward to write access information.
Here's my quick and easy guide:

  1. Write a bullet point list of everything you have deliberately done to assist with accessibility.
  2. Look at the key areas of your premises: e.g. external path/route to entrance, entrance door, toilet, bar/restaurant area, reception etc and describe the access in literal terms, paying special attention to the floor surfaces and space - e.g. "One 6 inch step to front door, with grab rails. Portable ramp available. 1 inch high threshold between entrance hall and restaurant, accessible bathroom*, crazy paving path to entrance, staff available to assist with access where needed."
  3. Combine the two lists into bullet point descriptions. Avoid flouncy words and attempts to make it sound technical and politically correct - your average individual with non-standard access requirements wants the info, not the jargon.
  4. Put the list on your website.
  5. Add photos. Lots of photos. Not pretty, posed photos - but practical ones which clearly show the path surface, or the toilet layout, or the amount of space for getting between tables etc. Every person will have slightly different abilities and needs, and letting them see for themselves whether your venue will work for them is the best way to approach it.
  6. Add a phone number to contact with questions or feedback
  7. Any questions or feedback you get on accessibility, ask yourself "would this be useful for others to know" - if so, add it to your accessibility info list, making sure you keep it up to date with any layout changes. (You won't pick up everything relevant first time. Just keep learning, using your common sense, and listening to your customers.)
  8. Wherever negative issues are highlighted, use your problem solving skills. You might be surprised at how cheap and effective solutions can be.


Voila, you will have made my day and there is a good chance you will have got my custom.
[image description: manual wheelchair user stuck in a gravel path.]
Note: from a wheelie perspective: gravel is evil. Think 'wading through treacle'. If you have a gravel car park or pathways, please please make a more solid area for wheelies! 

Even if some things are not 'ideal' in terms of access, don't hide it - describe it. Because you might be surprised to find that when people know about it and are prepared, it is workable for more people than you thought.

I recently went to a fabulous restaurant (my mouth waters every time I talk about it!) - in an old country house (Fallowfields, Oxfordshire). They'd had no accessibility info on the site. I thought access would be poor. It wasn't. Some parts weren't ideal - other parts were perfect. I got chatting to the owner and got the impression he had has a similar 'disability awareness training' experience to me. He couldn't rebuild the rambling old building to be a perfect wheelie heaven, so it couldn't be accessible. It almost felt as if he was ashamed and depressed by the lack of access. We chatted, and I think he realised that I, as a wheelchair using individual could access everywhere I needed to and things could be even better with relatively little expenditure (an external light, a tiny portable ramp for the 2inch back door step, tidying up the accessible bathroom and some minor path repairs). The outcome was that the above procedure was followed. He wrote a list of stuff deliberately done, and stuff planned as a result of my visit (much of which is already done). I added a few things I'd noticed and appreciated like the low height reception desk. AWESOME! I could actually see the receptionist when I spoke to her!

And hey presto - one of the most useful accessibility information pages I've seen. Yes, I might be slightly biased as I helped write it and it features my 'Positive Accessibility Logo' (not for use without my express written permission and payment of a suitable fee), but it works. Because it has the kind of info that people with disabilities find useful.

And whatever happens, please don't tell people your premises is 'accessible' without providing further detail - because everyones 'accessible' is different.
[image description: Electric wheelchair user having a face-palm moment at hotel door, door has a step. Standing person saying "But we are accessible! It's only one step and see, we have installed a grab rail!"]

*'Accessible bathroom' used to describe a 'larger than average, has grab rails, step free access, easy-to-use taps and privacy lock' bathrooms is one of the few times the use of the word 'accessible' is moderately useful. However, given the huge variety of set-ups in these I would strongly advise putting a photo of the accessible loo and the area around it.

Tuesday, 4 February 2014

"Most Welcoming Station"

On the wall near the assisted travel helpdesk at Paddington station is a poster saying that they intend to be (amongst other things) the most welcoming station.

They weren't doing badly. I mean, the staff looked up and greeted me, and checked what train I was catching etc in a friendly, professional, and yes, welcoming manner. But it stopped short of being the most welcoming.

Because, in my books, that title is currently held by Didcot Parkway.

Yes, there is a stupidly long detour needed to get step free access to platform One. (looking on google, I reckon it's nearly 0.5km longer than the stairs!) and is not an easy route to push. It's a route I need assistance for.

And the current improvement works mean that being dropped off near the ticket office is a nightmare.

So how come it is still welcoming?

Here's how: It was windy and cold and rainy and generally 'stay inside' weather. But 4 staff had a fight over who got to take me the long, outdoors route to platform One.


(OK. slight exaggeration, they didn't actually fight.)
Then once they'd decided on 2 winners, one pushed me, the other fetched an umbrella and we braved the storm. 'Brolly position meant the chap pushing couldn't see where he was going so we travelled to a soundtrack of "left a bit, right a bit, dropped kerb coming up".

Once on the platform, they stayed (with the umbrella incase the heavens opened once more) and we chatted until they put me on the train.

Usually the unobtrusive help is best - and what I usually get at Didcot. But sometimes, when the help involves people going out in hideous weather, having staff fight over who gets to take you rather than who gets to stay inside, and then go the second mile in ensuring that you are as comfortable (and dry) as possible, is, quite simply, the most welcoming thing I could have asked for. It made me feel special - not as a person with disabilities, but as a valued customer.

And they are interested in my views on access and assistance etc. In a 'talking about stuff so we can do better' way.

And not only that, but a few weeks ago I got told off for running in the subway at Didcot. Which is awesome. Why?...well, I might have been going a little fast. It is down-hill and on the smoothest, most marvelous-for-wheeling floor. Most places no-one says anything because I'm in a wheelchair. Eyebrows might be raised, but no-one says a word. Perhaps they think I'll be offended. But no, the good natured yell reminded me that I might be on wheels, but I am also just one of the crowd of commuters who occasionally hurry a little more than is appropriate.

So Paddington, although I applaud your efforts, Didcot still holds first place.