Tuesday, 25 November 2014

Two offers of help

The other day in town I had 2 offers of help.

The first I was about to put my chair into the car. A man approached and asked "Would you like some help?"

Something about his body language and sincerity of expression rang all my alarm bells. In that split second I knew, just knew, that he would be one of those who tried to insist on helping even when it wasn't helpful, and wouldn't listen to my answer.

So I steeled myself for a fight and gave my first line of defence "No thank you. I'm fine thanks" with a confident smile. I could almost feel the more assertive lines queueing up ready for use.

And then...

He smiled back, wished me good day and carried on past without a pause.

It was perfect.

It was unsettling. I must not make snap judgements about people!

The second was in a small shop. A really tiny space. A 3 metre long, 1 metre wide corridor of floor between the door and the till. I had just paid and was leaving. A gentleman entered and was standing by the door.

The door is fabulously light and easy to open. I wish more doors were like that one.

I approached the exit and the gentleman said "Allow me" and opened the door.

"Allow me". Such a charming old fashioned saying! No pity, no assumption of inability, just respect - and as he was standing by the door it made sense to hold it open.

There was only one possible response: "Why thank you!" accompanied by a slight bow and a huge grin.

And there you have it. 2 perfect offers of assistance within an hour. One offered sincerely but listening to and respecting my answer. The other was simple charming politeness, with no connection to my disability.


Thursday, 20 November 2014

To the young lady responsible

To the young lady responsible for the diabetes cards,

I would like to thank you on two counts:

Firstly for asking for these cards - your Mum was really fun to work with and I am glad you like the results.

But secondly, and more importantly: For reassuring me that when people don't listen to me, it isn't my fault.

You may not know this, but when I was chatting to your Mum she said how you were bright and perfectly able to speak up for yourself, but that sometimes you found it difficult because people would assume they knew better, or just not listen.

Well, ME TOO!! Sometimes it's like I can't get people to understand, even though I know what I'm saying is right. I hate it. It makes me feel small inside, and it can be a bit scary when what I'm saying is important and if they do the wrong thing it could hurt me or make me worse. Do you find that people not listening makes you feel less confident about speaking up next time you need to? I do.

So it is very reassuring to find that someone else with a completely different condition finds the same. It isn't because of us, it isn't because of our conditions - it's because people are people. And sometimes people aren't good at listening.

I am really glad that your keyring cards help other people listen to what you have to say, just like mine do for me. I think perhaps the fact that they are written down and look official makes people take what they say seriously. And perhaps the little stickmen make the message happier so it gets into people's brains more easily.

Either way, I hope you are proud of yourself for your part in creating these cards which can help lots of other people like us be heard and to approach life's challenges with confidence.

Thanks again,

Hannah Ensor.

[Note: photo used with kind permission of the young lady's parents.]

[See here for the full range of keyring cards, covering a wide range of topics including diabetes, pain, fatigue, hearing difficulties and autistic spectrum disorders.]

Wednesday, 19 November 2014

Can't, Can, and everything in between



A friend posted this image on Facebook.

I love it. It allows for difference, and it allows for achievement.

To achieve the best we can always takes effort, courage and persistence. When it comes to us with disabilities, a little ingenuity and perseverance means we can frequently do more than expected. We may do things differently, we may use customised equipment, but we can still do awesome things.

But we all have our differences and our limitations. Real limitations.

Which makes the 'You can do anything you put mind to' and 'Everyone can achieve their dreams if they want it enough' phrases nonsense.

For example I cannot sing well.

If my dream was to become a professional opera singer, no matter how much I trained, no matter how much I worked and practised, I would at best be the 'scrapings at the bottom of the barrel' when it came to casting. And I would have devoted my life to something in which I had no real prospect of success.

This doesn't mean we see a barrier and assume we can't, but that we consider it and decide whether we go ahead with finding ways round it, or we look around at our options and head of in a new and equally interesting direction.

It was by doing this that I found my new and much loved career in stickmen cartoons. I was an Environmental Health Officer and loved it. I had to medically retire. I looked at ways I could continue in the field around my limitations and I looked around at what I really wanted, and what other options there were. And I found stickmen, and in using my stickman skills while considering Environmental Health options I ended up deciding that actually, stickmen were more fun and more suited to my lifestyle. If I had clung to my dream of being one of the top EHOs in the country I would never have found my stickmen, would have had to make huge sacrifices in every other area of my life, including with my health, and it is doubtful that I would ever have achieved my dream - a lifetime of struggle for very little reward. Instead I found a new dream: an international stickman business which helps break down the barriers of misunderstanding and miscommunication around disabilities.

Admitting 'can't' doesn't mean weakness when it is replaced by things we 'can' do. Nor does it somehow reduce our value to recognise our limits (whether temporary or permanent.)

In life, 'Can't' happens. So what? Let's be too busy with 'Can' to worry about it.




Monday, 3 November 2014

Little things

I love being able to wear snuggly jumpers, and thick slipper socks.

I love warming stews and hot punch.

I love cosy evenings with the candles lit.

And I love how easily amused my 18yr old sister is.....





Tuesday, 28 October 2014

Hypermobility type Ehlers Danlos Syndrome: Progressive or not?

I've noticed this discussion recently on social media.

The problem is that there is a difference between 'a progressive condition' and 'a condition which can cause progressive levels of disability'. With the former, deterioration is inevitable. It will happen in every case. In the latter, it will happen in some cases.

With hypermobility type Ehlers Danlos Syndromes (which many experts consider as the same as JHS and BJHS), the genetic fault that has caused the faulty collagen remains constant. It doesn't change. It doesn't progress in a medical sense of the word.

But the symptoms can get worse. The level of disability can progress.

Mine got worse. Lots worse. I deteriorated from a 20 year old with a few quirks and vulnerabilities, to a 28 year old wheelchair user, retired on permanent ill health grounds, with unstable joints throughout her body and who struggled to hold a conversation or eat.

With the benefit of hindsight and everything I have learnt since being diagnosed at 24, I can see that the reasons for my deterioration were 3 fold.

1. I was overdoing it. I was doing more than my body could cope with, and ignoring all the signs that my body wasn't coping. Because I didn't think they were real symptoms, and I didn't want to 'give in'.

2. With injuries and pains I often rested more than I should have done, causing muscle wastage - and more pain and instability. (some rest post injury is important, but I now know that keeping moving and slowly increasing use is important.)

3. I lived in positions where my ligaments were being stretched (slouching at the computer, twisting my legs into 'comfortable' positions, poor shoulder posture etc.)

So my condition progressed. I deteriorated.

But since then, I have improved - HUGELY.

No, it was not a magic cure.

But I have improved. What happened? A combination of factors.

1. I started a medication for POTS which meant my body could cope with the basics of eating and talking without throwing a compete hissy-fit.

2. I learned about managing my HMS/EDS, much of which was through the Hypermobility Syndromes Association (HMSA).

3. I crashed out. Big time. 5 weeks in hospital time. There I learned (the hard way) that when my POTS symptoms started building, I should take evasive action (cool down/get my core and leg muscles working/lie down/drink rehydration stuff) instead of waiting for symptoms to reach avalanche status and swamp me - In short I learned to pace. To put into practice what I'd learned from the HMSA.

And I built the confidence to communicate about my management choices rather than just do what I thought I was being told by the next medical professional I saw. Learning to communicate about my  choices in a way they understood and could respect, so we could work together to improve my management.

When I went home instead of trying to do as much as I could to prove I wasn't 'giving in', I started listening to my body. I learnt that I couldn't cycle for 10 minutes - it made me unable to function for days. But I could cycle for 2 minutes provided I concentrated on keeping my joints in good positions and my muscles nicely activated. 'cos that only tired me out for an hour. (By slowly building up, I now can cycle for half an hour and more!)

And I worked at living with poise. Not like I have a poker up my...spine. But upright, strong, and ready for movement. Like a gymnast about to do a run-up for the vault.

I admit I tend to go in cycles. I start committed to my exercise regime, careful with joint positions, I pace well etc - and improve. As I improve, other things start taking priority....business, housework, socialising. And I start to deteriorate again. Then I suddenly realise, feel a little foolish, and start being good again. - and as I am good, I improve. Until I get complacent and the cycle starts again.

But the important thing is that I don't go so far over my body's limits any more. I recognise the warning signs so that when I start being good again I haven't caused new damage to my ligaments.

And at 32 I would say I am stable. Not because my condition has fundamentally changed, but because I know how to live well with it.

If we keep doing more than our bodies can cope with, we will get worse. If we consistently do less than our muscles need to in order to stay strong, we will get worse. But if you think about it, this is actually true for everyone. That is what happens to every human being who does too much or too little. It is why athletes retire young - and frequently with a long list of injuries and why people get injured doing 'unaccustomed exercise' all the time.

During those pre- and early post-diagnoses years, many bits of me have worsened - been more stretched. And I expect I'll stay stretched. But I don't expect to pick up more outside of the general deterioration that happens with life in general unless I have a bad accident or significant illness or develop another condition which makes managing my HMS/EDS even harder - and thinking about it, those types of things can happen to healthy people too and cause a deterioration of their physical condition too.

It is more, as a friend 'Flick' said to me "relapsing/remitting (flare/rehabilitate), with some cumulative tissue damage. Un-managed it mimics progressive."

My body will never be one that can cope with 'average'. It never has been. Finding the right balance and maintaining it will always be harder for me than the average bod, but it is doable.
And I am extremely grateful to the HMSA, the hypermobility clinic at UCH London, and my cardiologist for helping me learn to manage my condition, so that I can respect and understand it instead of fear it.

To all you who have not yet been able to find the right balance, don't give up. It is hard work, but also very, very rewarding.

(Images are extracts from the book "You know you have HMS or EDS when..." by Hannah Ensor.)

Sunday, 26 October 2014

ASC - creating a keyring card pack

As some of you will be aware Stickman Communications (R) has a number of cards which are relevant to people on the autistic spectrum. Some are specific, like the one about difficulty making eye contact. Others are more general, like the card saying "Thank you".

I am in the process of putting a set of cards together as a 'starter' pack of the cards which are relevant to most people with ASC, which will then be sold at a discount (compared to buying the cards individually). This pack will go on sale on Tuesday 28th October (the delivery date for the new designs). The aim is to have a simple 'starter' set of the key cards that people can customise by adding other cards relevant to them.

The 'traffic lights' card set is already available at a discount, and so I'm not planning to include them in the ASC starter set. (But I'd be interested to know your thoughts on this.)


So far, my ASC starter pack list has the following cards:



But which cards do you think belong in the ASC starter pack? There are many more cards in my shop, and the ones I think may be relevant to ASC are here. (The full keyring card range can be seen here (Scroll down the page).)

If you'd like to leave your feedback in the comments, on my facebook page, or by email, I would be most grateful. I won't be able to do exactly what everyone says because everyone will have different opinions, but at least I will be able to get a better idea of what most people will find useful, and therefore end up with a good selection.

Also let me know if you think there are products on my site which are not keyring cards which would be useful to include in the pack.

(and if you have ideas for cards that I haven't yet made, feel free to make suggestions. I can't always make the cards suggested, and sometimes it takes a while, but I do my best.)

Tuesday, 14 October 2014

Type 1 Diabetes: Let me manage my condition

I've spent the past few days working on some type 1 diabetes cards, at the request of a group of parents of children with the condition.

I knew little about the condition, but as I read through the parents requests I realised that actually, the condition might be different, but the communication problems were the same. Assumptions and disbelief. And well intentioned things which REALLY don't help - even trying to force me to do something which I know I can't. These are barriers that I have encountered - and ones which I know the stickman keyring cards can help break down.

The scenarios described, like people not believing that a child with diabetes could enjoy the food at a birthday party, and simply taking their plate from them. Or assuming that they caused their condition through an unhealthy lifestyle etc were not ones which I had experienced personally, but they resonated with my experiences - and next thing I know I've finished the drafts in 2 days rather than the week I had planned!

So here are the drafts:
The text for the first one isn't easy to read in this image, so I've copied it here:
"I have Type 1 Diabetes, a life-long condition where my body can’t regulate my blood glucose levels. It is not caused by diet or lifestyle, but an autoimmune reaction destroying my insulin-producing cells. I don’t have to follow a special diet, but I do have to take varying amounts of insulin. Treating episodes of high or low blood sugar immediately is really important for my long term health so I may need to check blood glucose, inject insulin or eat a sugary snack. Please don’t ask me to leave, but let me treat my condition wherever I am. Any delay will make things worse. I know what to do. It is my normal." 
(each card is 110x80mm, laminated, durable plastic, and come on a keyring.)

As I once heard someone comment, the keyring cards aren't for people who can't speak, so much as for people who won't listen.

A way to state requirements with confidence - and in a way which people accept far more easily than when spoken, and are equally effective with both adults and children. I'm still not sure why. Perhaps it is because they are professionally printed and official looking. But I wonder if Terry Pratchett was right when he wrote "Laughter helps things slide into the thinking."

And while discussing the cards with one of the parents I realised that one particular aspect of their treatment was very familiar. For several months (or possibly years, I can't remember!) I had to inject myself 3 times a day. And sometimes I really wanted to say "actually, I need it NOW and don't have then energy to waste getting to somewhere 'private' just to make you feel 'better' about a young person needing injected medication!" - so it became a more general 'injections' card.


So if you have any feedback, suggested improvements or errors spotted, please let me know by this Thursday - as I will be sending them off to the printers then :)

Saturday, 27 September 2014

Bruised Knees

I have bruised knees.

Both knees.

Many bruises.

They kinda hurt. but they make me smile.

Because every time I feel the ouch I remember Tuesday night. 'Dugout Dance' had been closed for the summer, and Tuesday evening was my first session back.

I decided to dance not in my wheels, but from sitting on the floor. That way, when I fall I don't have far to go, so I give all my muscles a good workout and make full use of my flexibility - an asset when dancing, even if it has stolen my ability to walk properly.

It is really hard to explain just how alive it makes me feel to dance 'floor based'. It means that my Postural orthostatic tachycardia Syndrome doesn't complain too much - because I move at my own speed, can switch to lying down whenever I decide to, and there is no need to attempt standing poses or ones with my arms above my head (Both huge triggers for my POTS). The result is bruised knees and 2 hours of exercise at whatever intensity I feel able to do, and where I feel truly beautiful and at one with my body. A moment where there is nowhere else I'd rather be.

So I feel the bruises and remember the beauty.

And and all is right with the world.


Saturday, 20 September 2014

To ask, or not to ask, that is the question.

Last Saturday there was an article in The Guardian by Robert Hoge called
Don'ts' aren't helping: here's five things you can say to someone with a disability
It makes some important points - not least that many people who aren't used to disability are so
terrified of saying the wrong thing that they are almost unable to relate to people with disabilities, and this does need to change.
Description: A scared looking stickman in a cloud of politically correct angst sat next to a stickman in a wheelchair saying Hi. Caption reads "Differently Normal, not the PC police".

But I'd have to agree with Mik Scarlet's response that actually, no. Some of those are not things people should be encouraged to ask.

Mik is totally right where, when addressing the 'tell me about your disability' question, he  states
"...for every disabled person who is in a place where they can answer this question there are just as many who are not. "
There are times when asking this question is cruel and extremely upsetting. Don't ask a random stranger this, just don't.

Even so, Robert makes this excellent point:
"If we want to bash through barriers confronting people with a disability, we need the community to have a better understanding of us. This probably means some uncomfortable conversations – for others and for us. Focusing on what people shouldn’t say isn’t the way to build good relationships. If we can face living our lives in these bodies, we can face some difficult exchanges along the way."
But this doesn't need to be said to the non-disabled public. It needs to be said to us people with disabilities, so we can support each other in finding our own ways to open up the lines of communication, and find ways to let people understand our world. It is why I started Stickman Communciations - communicating about disability in ways that both disabled and non-disabled can relate to.

So: What should be said to the general public? (Other than Rob's much needed observation that it is OK to say hello.) To me, it is simple.

Forget about disability.

There are various phrases which are routinely used for 'random stranger' conversations.

1. "Lovely/Awful weather isn't it!"
2. (In a shopping centre, to someone with many shopping bags) "Managed to find some good stuff then?"
3. (On public transport) "Looks like the train/bus is late again/on time for once."
4. "Having a good day?"
etc.

The reply to these is usually
either 
Chatty, encouraging more conversation - in which case carry on chatting. And over time chat might contain more slightly personal questions (about work, life, health, family etc.). But not overly-personal (i.e. toilet habits, sexual issues etc.)
or 
Blunt, annoyed, or they turn away from you. In which case, don't attempt to carry on chatting cos they aren't in the mood.

And if we put the disability issue back in? It's exactly the same. 

(No. it isn't OK for a random stranger to walk up and ask me how I use the loo. Yes, this really happens.)

As to when is it OK to ask about disability...well, it is a personal matter. Some parts of a disability might fall into the 'slightly personal' category, some the 'overly-personal'. So, if you've got chatting to someone and would like to ask about their disability, the best option is to say:
"May I ask you about your disability?" - and then respect whatever answer you are given, whether a yes, or a no.

But can you offer help? - again, take out the disability. Do they look like they are struggling? Yes? - offer help. No? - Don't offer help.

And as to telling a person with a disability that they are inspiring....guess what.....take out your perception of disability, and then consider whether the facts that you know give rise to the inspiring or not.
For example:
I get on a train, and wheel myself expertly into the wheelchair space. A gentleman leans over and says 'That is really inspiring'. No. It isn't. It is a basic skill that is well within my physical ability, and no more notable than an average non-disabled person sitting in their seat without squashing their neighbour. Unfortunately all this comment told me was that his expectations of my were almost non-existent, so his praise was, at best, extremely patronising.
Another example:
I get on a train. I chat with the chaps opposite. During the conversation my wrist dislocates and one of them helps me relocate it. I then manage to choke spectacularly and can't speak. I roll my eyes, and signal "I'm OK" - and use my keyring cards to explain that 'My ability to speak coherently is temporarily missing, please try later.' My part of the conversation switches to hand gestures. As they help me off the train at my destination, one of them says "You are inspirational."
Fair enough. They had seen me fall apart and deal with it calmly. They had seen my body do things which I hate it doing, and stay positive.

So before you tell someone that they are inspiring, just ask yourself "do I know from what I have seen and heard, that they have pushed their limits in an exceptional and inspiring manner, or am I making assumptions?" - and when you have your answer, you will know whether it is appropriate to say it or not.

[Edited 22/09/2014 to add: Perhaps the reason there are few 'what to say to someone with a disability' lists because they would be so long the brain would melt half-way through. Topics from space travel, to 'Lost' via whether Elvis really died, and where do odd socks really go?]

Monday, 11 August 2014

The best of conversations

When fatigue is playing up, conversations decrease. Word finding isn't easy, sentences don't happen and word order becomes increasingly creative.

On Saturday I was facebook chatting with a Carla. Who was also a fatigue zombie.

Minions to the rescue!!

What happened next was one of the best conversations I have ever had.


Thursday, 7 August 2014

It's been busy!

I know my blog has been quiet.

July's offline stuff stole all my energy -it's been quite a month!

New products, attending Warrington Disability Awareness Day, more new products, helping with the Hypermobility Syndrome Association's residential conference and.....new lycra.

Lycra?

Yes, lycra. from www.dmorthotics.com

You see, some of the way my POTS and EDS have affected me include: lots of blood pooling in veins causing reduction of blood supply to the brain, very poor proprioception and lots of unstable joints. To help manage the blood pooling I've been wearing standard compression stockings plus sports compression wear plus abdominal binder for years, and been on various meds (including Octreotide - an injection every 3 weeks in the butt). They have helped but not enough. So I grabbed the chance to try a custom made lycra outfit (socks, leggings, T-shirt) with extra compression in relevant places.

I wore it on the Saturday of the HMSA conference. Yes, this is me:


How awesome is that!?!


Funnily enough, this was me the next day:

(My wheelchair is out of shot. Or possibly being sat on my the photographer. I can't remember. I didn't mind what went on around me so long as I was left in peace.)

It's not a cure, but it is a really useful management tool - even if I currently have no idea what my capabilities are and consequently am totally failing on the pacing front. Moments of 'LOOK I can have a conversation standing up! Isn't this amazing!!' followed by flat on the floor moments where words are not a viable prospect at all. But balance will come with time and experience.

The next few months will be trial and error, discovering whether can I wear it everyday without trashing my skin, without injuring too many joints while putting it on, and possibly hardest of all, learning where my limits are and what I need to do to manage my conditions as best as I can.

This will definitely have to include not sitting upright and relaxed for more than 30 minutes without doing something to get the blood moving (says me after 2 days of going 'whoop I'm alive', doing an hours work on the computer, then crashing for the rest of the day. I try to be sensible, but sometimes I end up learning the hard way!)

So it's no cure, but it is an exciting new tool which should improve my condition management and help me maximise my abilities.

And as I am now off all my POTS control medications.....my butt cheeks are most pleased not to have an elephant sized needle attacking them every 3 weeks!

[Edited to add: this is also a result of 8 years of physiotherapy, pilates, adn working really hard on posture and joint control ;) ]

Wednesday, 16 July 2014

Warrington - and difficult questions.

I spent Sunday at the Warrington Disability Awareness Day celebration. It was a lovely event - very well organised, and with a lovely atmosphere. I really enjoyed it.



But there is one question I found really difficult...

"So what is it that your company does? Is it aimed at people with disabilities, or carers or the general public?"

Look: My business plan is "Draw Stickmen about life. Sell stickmen about life. Create stuff that makes communicating easier and more effective. Have a positive mindset, but ALWAYS draw real."

I'm not sure I've consciously created anything specifically for people with disabilities - I have created many many things for the people who meet someone with a disability and don't know how to react, or don't understand or respect the persons limitations or abilities, or go all weird - forgetting basic common sense, assume disability is inferior, or even worse, that disability is automatically some terrible, terrible life which must be constantly full of awfulness.

So although most of my stickmen products are owned by people with disabilities - they are mostly aimed at helping the people they meet to learn to relax around disability - respect but not fear. Disability is not the end of the world, it's just a different normal.

"But is it aimed at people with disabilities? or the general public?"

No. Just no. It is aimed at people. It is aimed at helping people with totally different life experiences to understand each other a little better. It is communication. And there is no point in aiming your communication at one half of a conversation and not the other!

Thursday, 26 June 2014

Yoga stickmen!



I love these. They are variations of my keyring communication cards and are created in partnership with Kay from yoga2calm. True, there are probably thousands of people who do yoga out there who will think "why do you need laminated cards with these on? I just remember what to do!" But for those of us who can't "just remember" (brain fog, cognitive issues, learning difficulties etc.) it simply isn't that easy. And if you struggle with reading, you need an image which reminds you what to do.

Kay came up with the idea having taught yoga and mindfulness to adults and children with special needs for many years - wanting to provide a simple, durable, easily transportable and easily understood way of reminding people of the exercises. 

They are laminated cards, 110mm x 80mm with a hole for a keyring in one corner, and this initial set of 7 cards (1 breathing/relaxation and 6 yoga poses), with the image for instant reminder of what to do on the front, and a simple explanation on the back, is available for £14 from www.yoga2calm.co.uk 

I love them because they make me smile about physio :D As someone with HMS/EDS I have to be very careful not to overstretch, and to focus on control and not flexibility, but the positions on these cards are well within my range of movement - and are actually harder for me than some of the more advanced ones because they make me have to control my muscles rather than just flop into extreme bendiness. The triangle, tree and tiger are all exercises I've been given by physios -and these cards are so much more fun than anything the physios have given me to use as a reminder! If you aren't familiar with how to do them correctly I'd advise getting a lesson or 2 so that you know you are doing them correctly. (Kay is seriously clued up on HMS/EDS which is probably why these work for me!)

My personal favourite is the breathing one. I have found myself using this exercise to help me sleep and when my POTS kicks off an adrenaline rush. I don't have an expanding ball but even just holding my hands as if there were on an expanding ball or imagining the ball as I breathe seems really effective for me - with the image of the happy, serene little stickman in my head. And it can be done anywhere and in any situation. I can't help wondering whether this card might help people with anxiety by being such a positive and visual reminder of something which can be done to help calm down.

I'm really hoping that these are a success because then we will expand the range, and although the breathing and relaxation exercises are definitely more difficult to depict in stickman, those are the ones I am looking forward to most.

Wednesday, 4 June 2014

My Awesome was on strike.

During a particularly rough patch in May (which was EDS awareness month) a friend (Carla Spear) made a comment about it being OK to hide away and return to being awesome when I can.

I loved that concept. That our individual awesomeness can go missing and that's OK and a normal part of life. Well, it is certainly part of my life!

So this happened:
Awesome on strike T-shirt. (c) Hannah Ensor
[image of a stickman in bed with the covers over his head. Text reads: "My awesome is on strike. So I'm searching for it under my duvet."]
There is a significant drawback to creating images that resonate with me personally. Especially when people say "I want that on a T-shirt". Because...well, my awesome was on strike, so doing proper work wasn't going to happen, but playing with colours and stuff on a picture was the perfect pass time.....

And suddenly I NEEEEEEEED the T-shirt. 

Awesome on strike T-shirt. (c) Hannah Ensor
[image of a stickman in bed with the covers over his head. Text reads: "My awesome is on strike. The duvet is overseeing essential negotiations."]

My business plan doesn't involve T-shirts for a few years, but due to my NEEDING this T-shirt I have made an exception to the rule.

So from now until the 1st July 2014 I am accepting advance orders of this limited edition in a range of sizes and colours here, then I will do a single print run of the T-shirts ordered, and then send them out at the end of July. (I don't plan to keep them in stock, so if you want one you need to place an advance order.)

So by the end of July I'll have one. The perfect T-shirt for raising a smile on a bad day. And so will all the other people who order one before July!

.....well, that is the plan. Only..... I might end up deciding I can't wait that long and getting myself a printed sample T-shirt early....I know, I know, is it really worth £40 for a single T-shirt?....well, no...but this T-shirt is special! So maybe......

Wednesday, 21 May 2014

Wristbands and Unicorns

Everyone working in the world of printing will be able to tell you horror stories of  misprints, spelling mistakes, pictures that reverse themselves etc. Normally you keep quiet and don't tell anyone your mistake....

But this was too cute.

When I ordered the new 'differently normal' wristbands, as always I got the proof through - and did some colour tweaking....and then it hit me.

My happy little people had morphed into....

Unicorns.


Slightly distorted, but still cute.

Unicorns.


Both I and my account manager from ideasbynet laughed - then spent half the phonecall discussing the merits of the new unicorn style, before we returned to reality, discovered that the file was corrupted and solved the problem.

Despite having seen the correct proofs, it was still a little nerve racking opening the box of wristbands yesterday....

....would I be faced with a herd of unicorns?

I needn't have feared: a box full of colourful, happy little wristbands grinned back.

And I immediately adopted one of each colour in the childs size -because they are possibly the most happy wristbands in existence:


The moral of the story? Always check your proofs...

....And unicorns can turn up in unexpected places.

Monday, 12 May 2014

Pain: Common Misunderstandings

Talking about pain isn’t easy, but it’s even harder when the phrases used mean different things to the patient and the medical staff trying to help them.

I've experienced  plenty of misunderstandings when trying to discuss my pain and medical conditions with doctors and physiotherapists – and seen it happening to many others too.

My first memory of total bewilderment when it came to communicating about pain was when I was 10. I was shown a piece of paper with the numbers 10 -1 down the left hand side, and 1 - 10 down the middle. She pointed to the top of the page and said "this is no pain" and pointed to the bottom and said "This is the most pain you can imagine." And asked which number my pain was. I sat there is shy silence unable to work out whether 10 was high or low - it was at the top AND the bottom! I chose 3. What I meant was "not screaming, but bad." But we had misunderstood - so the nurse said 'That's quite good then' and walked away.

I didn't correct her because I was 10. And I didn't want to complain. Or be told I was attention seeking or making it up.

And today, as a confident young woman, I still run into trouble when talking about pain. It has taken a lot of time, effort and error for me to learn that what phrases mean to me isn't necessarily what they mean to someone else. Often on facebook I see comments from patients really upset at something a doctor has said and part of me wants to shout at the doctor for saying such a stupid thing - because I know how it feels. But part of me wants to shout at the patient that they’ve misunderstood!

When a doctor says “I'd like to refer you for psychological help” did they mean they think you are mad - or are they trying to say they recognise how tough things are because of your pain and want to support you?

It’s a recipe for disaster.

So I turned to my stickmen and, in association with Pain UK, created the leaflet “Pain: Common misunderstandings between patients and medical staff”. The end result is a simple, straight talking, A4 double sided leaflet which puts opposing meanings of commonly used phrases into one place and will hopefully give everyone who reads it a better chance of communicating effectively about pain.

 £0.10 per leaflet sold through www.stickmancommunications.co.uk will be donated to Pain UK (registered charity in England and Wales, no 1145561) to support their vital work, supporting small charities dealing with pain-causing conditions, and working to make treating and managing long term pain a priority for government and the NHS. 

Chris Huges, Trustee for Pain UK says “Pain is rarely talked about and we are always seeking ways of helping people explain and discuss their pain. Hannah's approach is simple but effective, and manages to be very accessible with out being patronising or confrontational, while spelling out the difficulty of discussing pain from both sides of the fence.”

The leaflet will be launched on Friday 16th May, but is available for advance order now from www.stickmancommunications.co.uk


Thursday, 1 May 2014

The Tree of Achievement

Looking at my stickmen I realise just how many of them have their roots in personal experiences. 

And yet they seem to resonate with people across the globe.

My latest product is no different.


The "Tree of Achievement", just released as a poster,
 has been one of my most popular cartoons online, yet it is just a simple depiction of an outing with a friend. We came across a tree and both decided it needed climbing.....a few minutes later and there was an abandoned wheelchair and pair of crutches on the floor and two very happy people sat in the lowest branches. 



For us it was an achievement, and as such we found it beautiful. The memory of that has often reminded me that achievement isn't about other peoples abilities or expectations, but mine.
If it was a challenge for me and I did it anyway, then it is an achievement to be proud of.




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.

Wednesday, 15 January 2014

Why is trying to be 'Normal' so exhausting?

I've seen this topic mentioned several times recently and it made me think.

Attempting to be normal is exhausting. It really is. Frustrating too - because you never succeed. I've been there, I know.

I remember a conversation at Uni about haircuts. One lad's Mum had always cut his hair when he was a child, the other had always gone to a barber. Both found the other's 'normal' exceptionally
weird, and a highly entertaining conversation ensued. I've never forgotten it - because it made me realise that 'normal' was a pretty useless concept, and somewhat deluded.

But it didn't change the fact that trying to be a 'normal' young woman (work, socialise in the way I think everyone else does, study, feel guilty for not managing it all etc) was automatic. And as I became disabled my life became even more distant from my view of 'normal' and I fought this, trying to force myself to sit at my office desk for long enough, to behave 'like everyone else' when I could be seen - and crashing out entirely the moment I was alone.

I didn't actively choose to do this - it just happened by default. Attempting to live the life I thought I should have rather than the life I actually had.

But now, years down the line, I know better.

I realised what I was doing. A 5 week hospital stay with staff regularly telling you off (in the nicest possible ways) for being ridiculous isn't exactly a subtle hint.

So now I don't try and be normal, I try and be differently normal.

By that I mean I am learning what my body likes and doesn't like. How it copes with things. And it turns out, I am really quite different from many people:

  • I can't function in warm environments
  • lying down on park benches is essential in order to enjoy a day out
  • I can't eat chocolate
  • I can sit with my limbs in extremely obscure positions
  • I'm 31 and medically retired
  • I run a business based on stickmen - but only when I feel up to it.

But despite all my differences, I am also totally and utterly normal:
I go through life using the skills that I have, learning new ones where I can, and getting assistance where I need it. I bring my uniqueness, the same as everyone else does, and it makes for a richer life. Sometimes I give, sometimes I receive. [Note to self: never underestimate the power of giving a smile or positive comment. They are some of the most influential things you have experienced, so never despise your ability to give the same to others.]

Now I don't make my lifestyle on my personal delusion of "other people's normal" I live it by my normal, basing decisions on my capabilities. And in doing so I didn't get the fallout of people thinking I'm weird that I expected.

Instead I found a differently normal, rich and fulfilling life.



Thursday, 9 January 2014

Success!

Success is a funny old thing.

You make plans, and then something happens and you can't follow them, so your brain tells you you failed.

Yesterday was one of those days. Body strop meant I didn't even get my basic physio done and most of the day was spent half awake.

However, take a step back and think:

I put toothpaste on my toothbrush and soap on my hands.

I put the teabag in my mug and the laundry soap in the washing machine.



I put dinner in my mouth - which I successfully chewed and swallowed.

I used heat, relaxation and distraction to help manage my pain.

I read some things on face book and wrote a few relatively coherent comments.

I successfully spent periods of time hibernating from the world.

I changed channels on the TV, and I watched a DVD too - successfully operating all the necessary technical kit.

And best of all, I got through it in a way that means to day is a better day.

There was a lot I couldn't do, but that doesn't take away these truths. I didn't do a single thing from my ToDo list, but I sure was successful all the same!

Friday, 3 January 2014

Surviving winter with heat intolerance.

But surely winter is fine when you are heat intolerance - winter is cold, right?

Yes.

And then again, no.

Outside is cold, but inside people put the heating on!

And when outside is too cold for T-shirts, how do I wrap up enough to be avoid hypothermia, but not enough to collapse?

Some things I have learnt:

Always take the cooling vest when visiting people/restaurants and the like. That way the cosy atmosphere won't floor me.

My torso is the most important thing to keep cool. Never wear a gilet.

Arm Warmers are the best invention ever. At home I wear them instead of a jumper [sweater]. When outside I wear them with a light jacket or cape - so they make the sleeves into a winter coat, but don't overheat my body :D (we are, of course, talking about English winter here. I am not suggesting you venture out in to artcic winter with only a light jacket!!)

And I got 2 new pairs in the post today. Mmmmmm, lovely.

There aren't many in the shops at the moment, they aren't fashionable - especially as I like long ones which go above the elbow (leg warmers work too, but they aren't widely available here either), but fear not, there's at least one good shop on Etsy.com - and although I had to be patient as they came from Poland, it was worth it.

So I sit here in my cool office: in jeans and T-shirt, light scarf and arm warmers.

Life is good.