Saturday, 28 December 2013

Christmas Walks #2

On Boxing Day I went on another walk with 2 sisters, 1 brother and 3 of his kids. And learnt a bit more:
Down-hill slopes never loose their awesomeness.

 Benches are fabulous for POTS management. And I make a good cushion.

Temporarily vacated wheels will be hijacked.

And argued over.

But returned when asked - so small ones get to push me.

Life is never dull.

Friday, 27 December 2013

Christmas Walks

We have a tradition of going for family walks around Christmas time.

This year was no different in that respect. A walk with Mum and siblings on Christmas afternoon. But I did learn a few things:

Teenage sisters will fight over who gets to push me.
 Being pushed changes my centre of balance. This is very important when speeding on a brick paved pathway.

I can do a good superman impression.

So can my sister.
(we escaped with minor grazes and major giggles)

My family is awesome.

Wednesday, 18 December 2013

How to respond to an access complaint

After becoming stuck in a hotel loo (see Toilet Traps) I had a quick word with reception who promised to send the message on. Later I called the hotel, and was pleased that the member of staff I spoke to was aware of the issue and knew it was being addressed by management - and gave me an email address to write to.

I sent the email. 3 times - because I hadn't heard anything back and emails can sometimes end up in spam.

Yesterday I called, and was put through to the Health and Safety team. The manager was out but the assistant was able to confirm that my email had been received and was being acted on, and the manager would call me later.

Sure enough, a few hours later the Health and Safety manager called. He'd investigated and found a solution: the internal door to the ladies would be removed forthwith. And he thanked me for raising the issue because otherwise they might never have seen it - sounding genuinely grateful.

And he asked me to raise any access issues I have in the future, because it was very helpful.

And offered me a complimentary afternoon tea once they've sorted the WC access.

It got me thinking: although an intial email response saying 'thank you for your email, we are working on your case, and hope to get back to you within ?? days' would have been nice (access complaints are so often ignored that unless I get an acknowledgement I tend to assume nothing is happening) the Imperial, Russel Square, got it about right.

And the best bit was that they didn't make any excuses: they said "It just never occurred to me, I'm so sorry." and got on with sorting it.

So, based simply on person experience, what I would say to anyone receiving an access complaint is:

If there is an obvious, immediate solution, like moving a bin from the middle of the access ramp, it should be sorted immediately with a simple 'sorry, I'll make sure it doesn't happen again.' (No excuse, and no fawning necessary. The customer wants to get on with their day, not waste energy arguing.)

And if a person with a disability raises an access issue which is going to take more work to solve:
1. Listen. If appropriate, ask if you can try and describe the problem back to them to make sure you have understood properly. (It is your comprehension being checked, not their ability to communicate.)
2. Apologise. Explain that you will investigate and get back to them with a plan of action. Try to avoid writing off any solutions at this stage as there might be ways they could be made to work.
3. If the issue is having an immediate effect, ask whether there is anything you can do immediately so the individual can get where they want/need to while the main issue is being looked into (e.g. alternative route, using the bathroom of an accessible hotel room, lifting a wheelchair up a step, assistance from staff.)
4. Investigate, think laterally and creatively about solutions and don't be afraid to ask the customer for ideas. Real life isn't ticks in 'accessible' boxes, it's about creatively solving issues.
5. Follow up on your promises - and if finding a solution is taking longer than expected, tell the customer. Keep them in the loop.
6. Tell your customer your plans. And then solve the access issue.
7. Invite them back to experience the improved access.
8. Thank them for their input, and encourage them to raise any issues in the future.

NOTE: Avoid excuses as to why the access issue happened. It happened. It shouldn't happen again. Excuses sound like you are trying to ignore/devalue the access issue raised - even if really it comes from nervous horror at discovering an access fail.

Friday, 13 December 2013

Toilet traps

Some of you will remember my facebook update earlier this week about getting stuck in a hotel WC.

It was frustrating, unnerving, totally unexpected...and very funny.

I was shown into the bathroom by a member of staff - access was easy. There was an adapted cubicle in the ladies with ample space. All in all, pretty good.

It wasn't until I attempted to leave that I discovered a rather effective wheelie trap. It's hard to decribe in words, so I'll leave it to the stickmen.

Being stuck in a warm room when heat intolerant (i.e. one collapses) was not on my todo list, so after dislocating my wrist in escape attempts, I moved on to the moderately embarassing 'phone a friend'.

Only to discover that my phone had 'emergency calls only.'

No way was I calling 999 to say I was stuck in a loo! NO WAY. was hot...and no passing ladies seemed to need the loo....

So I called 999. "'s not technically an emergency...I'm a wheelchair user, and I'm stuck in a loo....could you call the hotel and get them to let me out? - I only have reception for emergency calls."

Fortunately half way through the call a woman walked in. Poor woman. She was met by a set of wheels streaking past at lightening speed, to the sound of "Someones here!! I can get OUT! quick! THANK YOU!! I'M FREEEEEE!"

In my desperation to get out, I may have seemed a little rude, but should the lady who let the slightly panicky wheelchair user out of the loo at the Imperial Hotel on Russell Square, London, on Mon 9th December 2013 ever read this: You are my hero. I am extremely grateful to you.

And to any architects, interior designers, and owners of accessible toilets, please ensure that in providing access, you don't forget the egress!

[Note 1: Opening 1 door with the left hand, the second door with the right hand, and then wheeling backwards with the other hand is not possible due to lack of a third arm.]

[Note 2: The hotel's Health and Safety department are working on  solving the problem. I will let you know when it's solved.]

[Note 3: Problem sorted, see How to respond to an access complaint. Good work, Imperial.]

Tuesday, 10 December 2013

Taxi redemption!

I wrote the yesterdays taxi related post before my final taxi journey of the day. And guess what?

As I left one venue for the next, a taxi dropping some people off just in front of me happily picked me up having seen me in his rear view mirror. And then.....

Guess what this London Cabbie did?

He donated my taxi fare to the HMSA.

So, Mr Taxi Driver who picked up a cartoonist in a white sporty looking wheelchair from the President Hotel and took her to just near Euston Station, thank you. You will never know how much your actions meant.

Monday, 9 December 2013

Taxi woes.

I've been to London a few times in the last month.

I've been for business purposes, hypermobility awareness stuff, and HMSA and Pain UK charity work.

It's been fun, rewarding, challenging, useful.

There's just been one fly in the ointment.


The ones at taxi ranks are fine. Well....ok. I mean, there were several drivers who looked distressed-ly at my wheels saying their ramp was broken - to which I replied that I can get myself in if they'll lift the wheels. Or occasionally they've suggested I go to another waiting taxi which is more easy to access.

Hmmm. Reading it back, that's not a very cheerful definition of fine. But they'd at least stopped and given me a chance.

Because trying to hail a cab out on the street is depressing. I have seen drivers scanning the pavements for custom, 'available' light shining, only to suffer instant tunnel vision and a fixation on the road ahead the instant my arm is raised.
Or the light goes off the instant I am within sight. I've even had them slow down within feet of me only to drive off again without stopping. Possibly when they realised I was one of the party.

I accept: wheels are an inconvenient fare to pick up - it takes longer to get the ramp out and time is money. But guess what? It's inconvenient for me too. I have to have that longer process every single time I ever use a taxi. Every Single Time. And you are seriously telling me that the inconvenience of picking up a wheelchair user just this once is too much?

And the fact that I know I can hop quickly into a taxi if the driver will just nip round and lift my wheels in just makes it even more frustrating.

I did find 3 solutions though:

Option 1: hide round a corner while a friend hails the Taxi (thank you Donna) and only appear once it has stopped. (moderate success)

Option 2: cross the road at traffic lights immediately in front of an available taxi. When immediately ahead of the vehicle, turn and make eyecontact, then hail his taxi. Totally unsubtle and kinda difficult to pretend he didn't notice. (success - but requires vacant taxi at the front of the queue.)

Option 3: enlist the help of an armed police officer. (Perfect. If you have one handy.)

Option 3 is definitely my favourite. The satisfaction of knowing that the person hailing a taxi on my behalf is one who no-one wants to annoy.

But really, truly, what I would really like is not to need strategies and cunning plans. I just want to hail a taxi like everyone else.

Saturday, 7 December 2013

Stickmen at the House of Commons

There is a great company called 'Really Useful Stuff' which highlights really useful stuff from all over the place. It is great because although much is really useful for people with a range of disabilities, it doesn't have the dreadful 'hospital' feel - just cool stuff that is useful in getting round ones quirks. They also have a panel of disabled and older people or user testing, mystery shopping, product feedback etc - essential work to my mind.

They recently did a survey on how accessibility of the high street has changed over the past 5 years, and to launch their results they had a cannape reception at the House of Commons, and invited me - of course I said yes!

It is an awesomely beautiful building. And Westminister Hall, where the general public are allowed, and where you go through to watch debates and suchlike, was almost like a cathedral. And it was lovely and cool (yes, of course I lay down on one of the benches using coolness and horizontal-ness to give the best chance of keeping my POTS under control later.)

But before you reach there you first go through the main gate (having told the police the purpose of your visit.) And then down a ramp to security. Everyone else went through the revolving gate and joined the back of the queue.......They opened the wide gate specially for my wheels. The 2 gates had separate ramps down to security. There was no queue on my side.

And it was a beautiful, long, gently sloping ramp. I was good for all of 2 metres. But then I realised I would never forgive myself if I failed to make the most of it.

(Please note I stopped well short of the security staff and remained in full control of my chair at all times. Honest!)

The event was on The Terrace - overlooking the Thames and accessed through the maze of corridors (smelling of a cross between school corridors and hospital disinfectant). It was a fabulous networking opportunity - with suppliers, manufacturers, politicians, charities, and all sorts of people working in different areas of accessibility. To my huge relief they weren't people interested in using the right words but people with genuine interest in accessibility. (I should have had more faith in the RUS guys.)

We also got to hear Sandra Gayer sing - she is brilliant. And Steve Day (a deaf stand-up comic) was hysterically funny. He got it just right - full of 'Oh that is so true - and put brilliantly' moments. His observations on the "ARGH it's a person with disabilities, what do I say!!!" panic - inevitably followed by doing something daft - were priceless. Despite our totally different impairments we definitely have some similar experiences with this! I got to chat with him afterwards which made me laugh even more. His humour was almost like a verbal version of my stickmen. Which may probably be why I loved it.

I even spoke to someone from the Royal College of Art (apparently Environmental Health degrees aren't standard qualifications for artists/designers) but they seemed to like my work - who knows where that might lead?

My only regret is that I didn't get around to speaking to the relevant person from Sainsbury's - I was planning on suggesting that they take a stickman cartoon approach to disability awareness training/reminding. I reckon it would be awesome for helping them maintain the high standard of disability acceptance I have found at my local store.

But I'll get over that disappointment eventually.

After all, how many people can say they got to play roller-coasters in the House of Commons?

Wednesday, 20 November 2013

Unexpectedly Perfect Storage

Over the past 6 months my product range has expanded hugely - new books, new stickers, new communication cards. As a result my office became somewhat....untidy.

It took me several weeks of research to find the right storage unit, plus several excel spreadsheets of price comparisons and space calculations. But I found the best one. The right size unit, with whatever tray sizes I needed and the colours I wanted. Customer service was excellent with quick responses to my queries.

I'd chosen 'Mount Industries'.

I was excited about delivery of the solution to my office woes, but when I got the invoice (and therefore the full company details - they are a part of Enham Trust) I realised that actually, my storage was being made and delivered by people like me. People with disabilities.

Perhaps like me they had tried a conventional work setting and found it didn't work for them. Perhaps they hadn't been able to find conventional work. Either way, I found my stickmen, they found Mount Industries. It is hard to say exactly why I love this so much. But I do. Perhaps it is something akin to searching for a product, buying the perfect one - and then discovering that it was made by a good friend.

And now it has arrived, sturdy and well made - exactly as ordered - and been fully stocked with stickmen communicating joyously about disability. Every time I see it I am proud. Proud of the people I have never met, but with whom I feel connected. Proud to be a customer of Mount Industries.

And my heart does an extra little dance of joy because I chose Mount Industries because it was the best value, the best customer service, and a professional approach with flexible choice.

I made no special allowances. I searched for the best, I ordered the best, and I got the best.

And it came from people with disabilities.


Saturday, 16 November 2013

12 tips for dealing with able-bodied people

Having read a few blog posts recently about how to interact with people with disabilities/not be able-ist which I didn't entirely agree with, I thought this one (written to me, from my perspective, based on my experience and observation, with a bit of silliness. May not be applicable/relevant to all.) was overdue:

1. You are an ambassador for people with disabilities.
Whether you like it or not. You might be one of very few people with visible difference that an individual meets, so how you react will colour there perceptions of disability and future interactions. Your reaction matters to your future, so be nice.

2. Offers of assistance can be refused politely.
Even when it is the 9th offer and all you've done wheel easily round your favourite shop. Sometimes you will need help, sometimes others will need help so you can't afford to make people scared to ask. Assertive is fine, but aggressive is not. It helps to start by thanking them for the offer...then give a firm, respectful refusal.

3. Kids are curious
They are learning about the world, and when they look at you they are usually trying to learn. Have a simple answer to the "why are you in a wheelchair" ready. Like "I can't walk very well."

Usually the kids are not judging, just learning, so even though it can get tedious, try to react nicely because that will be one less future adult who panics at the sight of wheels.

4. Not everyone is comfortable around wheels.
Political correctness may have taught them not to say lots of things, but forgotten to tell them "it's a person, show politeness and consideration and all will be OK. If it turns out they are truly nasty, that is nothing to do with disability and everything to do with them being human." This often shows itself in stupid comments, avoidance, patronising comments, and/or addressing questions/comments to an able bodied companion rather than you. Do not take it personally or take offence - this makes them even scared-er, awkward-er and worse-er next time. If you think you can say something that will help them relax, do so.

5. Try not to exclude walkies from your conversations.
When out with a mix of wheelies and walkies, conversation and interaction is easier with people on your level - in this case, other wheelies. Although this is due to practicality rather than a disdain of walkies and is perfectly innocent and accidental, try to remember to direct some comments up to the walkies and include them otherwise they feel left out.

6. Do not be offended by 'I wish I had a chair' comments
It might fall under tip number 4. Or it might be due to achey legs, or due to a disability you hadn't noticed. Remember that time when you were disabled but pre-wheels, and you said to a wheelie about wishing you had a chair, meaning it literally and that you were seriously considering getting one, and they bit your head off? DON'T MAKE THE SAME MISTAKE!
Or it might be because they have seen how awesome your chair is and are feeling a teensy bit put out that you just nipped past them with such speed, grace and agility. In which case, grin and admit that there and then, you had the advantage.

7. Never yell at someone for parking in a 'blue badge' space.
There are thousands of invisible disabilities which give a valid reason to use those spaces. Shouting abuse at someone who has parked legitimately can cause lasting damage. It is not worth the risk. A polite, friendly 'Have you put your blue badge out?' is inoffensive for legitimate users and can be far more effective long term for illegal users than a stroppy/aggressive reaction - cos aggression makes people become defensive so they don't actually think about their action, just about that stroppy disabled person who was totally unreasonable.
Unless that person is a friend/relative who has nicked your badge. Then yell all you like.

8. Avoid the temptation to use the word 'crip' at every opportunity.
You might be comfortable with it, in some contexts prefer it to 'disabled', and quite like the fact that it is 'un-PC' but some people find it genuinely offensive. No hard and fast rules here - many people are OK with it, just try and be aware of reactions and don't keep using it if it seems to cause offence.

9. You do not hold exclusive rights to the lift/elevator.
Able bodied people have many reasons to use them too. Like 'because they decided to.' Just wait your turn and try not to run anyone over.

10. Don't bite people who pat you on the head.
Head-patting might be infuriating, patronising and insulting, but biting gets you arrested. Don't do it.

11. People are more likely to walk into you.
They just are. It's nothing personal, it's because when in a wheelchair you are usually below their natural line of sight and not everyone is good at noticing things in their peripheral vision.

12. Able bodied people are people first and foremost.
So if they behave in an unacceptable way remember that first and foremost they are a person, just like you. They make mistakes too. Treat them with the respect with which you would like to be treated.

Monday, 4 November 2013

Word finding issues? You are not alone.

Yesterday I was giggling with my little sister about silly stuff we have said, where the wrong words pop out, or we read something and somehow read a completely different word.....I mean just how does 'customised' get read as 'Cigarettes'? (hers) or 'Husband and car' as 'handstands and custard'? (mine)

But I still find my brothers careful, focused, intensely thought out error one of the funniest. Not least because he was concentrating so hard on using the right word. (at the Birmingham Para-Athletics Grand Prix 2013):

Friday, 1 November 2013

They got it right

For the HMSA's family event in Wakefield I stayed at the Waterton Park Hotel. It is lovely - the grounds are stunning and the staff treat you like nothing is too much effort. Unfortunately there were a few wheelchair access issues, and a trip to A and E (due to a friend's anaphylaxis) but this still didn't spoil the weekend.


Because so many people got it right. Reception staff, catering staff, bar staff, leisure/gym staff, hotel management and more.

For example: between building 1 (main reception and our room) on the mainland and building 2 (bar, gym and restaurant) on the island in the lake there is a beautiful, 'listed building' cobbled footbridge, too narrow for a car. With ancient, pitted, wheel-swallowing cobbles. And it is stupidly steep. Beautiful, but the only way over for us was to ask for help....and yet....I didn't mind. Why?
Poor assistance is patronising and based on assumption.
Good assistance involves communication and respect.
But the hotel and gym staff went one better and simply made it clear they were there to serve - it made no difference whether it was 'help me across the bridge' or 'a glass of orange juice please.' I never heard a single complaint about our frequent trips over that bridge - no hint that we had inconvenienced anyone. They treated our requests as routine and totally unexceptional. Actually, it even felt like they were pleased to have been asked. Through their attitude the staff made the hotel accessible.

Because for the first time I can recall, asking for 'special' access arrangements/assistance in a public building was no more embarrassing or belittling than ordering food in a restaurant.

They got it right.

Having said that, I would still like to get across that bridge unaided....I may have suggested they get an X8 extreme. Or two.

If they get an X8 I will DEFINITELY be back.

Repeatedly. For the perfect Hannah 'relax and recuperate' holiday.

(If you have any disability/access requirements and are thinking of staying at Waterton Park or using the leisure facilities there, call the hotel to discuss it - when I booked they told me about the bridge, and that the gym is down a stairs - and sent photos to help me work out whether things would work for me.)

Tuesday, 15 October 2013

A Standard to be proud of.

When I was at uni, the constant cry of my lecturers was 'You can't trust everything on the internet!'

Which is true. But it would have been a little more helpful if they'd given us more guidance on how to know whether it was reliable information!

Through my work with the Hypermobility Syndromes Association (HMSA) I discovered an organisation called The Information Standard (IS)which is a certification scheme for all organisations producing evidence-based health and care information for the public.

My first introduction to it was a lecture during an HMSA staff training day. I was expecting a tedious, heavy going, try-not-to-fall-asleep-too-obviously session. What actually happened is a chap stood up came out with a few 'everybody knows that' statements - which when we actually thought about them, were either untrue, or easily misleading, or only part of the picture. And the rest was about taking a common sense, consistent approach to making sure that the info provided by an organisation (the HMSA) was accurate - for example, the information on the website is not just written from personal experience, or 'things the author knows', but is backed up by professionally researched and published information. Not only that, but it is also appropriate to it's audience - kids stuff presented in a way that kids can easily understand and absorb the information etc.

To my surprise, it was both entertaining and interesting. More importantly, it left me knowing that once the HMSA completed their process and became certified, their advice and information would be second to none. Yes, I am biased, but I have had some involvement in the IS process since with HMSA, and the level to which information is checked is impressive. Even articles which do not have long lists of references on them, if you need to query the information the HMSA has provided, they have documents tracing where the information is from so that it can be validated.

And now the HMSA has been awarded their certification. The background processes which most people will never see but which take a lot of work are in place and functioning well to ensure that the standard of information given is high. Having said that, the IS process is an ongoing one and the HMSA's information will be constantly evolving in line with medical knowledge.

Through working with the HMSA on my 3rd edition of 'You know you have HMS/EDS when...' and leaflet 'The use of splints and braces in the management of hypermobility syndromes.' (now available for advance order. Release date 26th October). I got to see first hand the level of dedication to clear and accurate information - and also the common sense approach. For example, my stickman products are effective because of their light-hearted, simple, clear approach. Trying to turn my book into a fully referenced essay would not work, so instead the HMSA holds a file which has the specific references for relevant healthcare information, and the rest of us get to enjoy the book, safe in the knowledge that it's humorous comments are medically accurate.

I am immensely thankful for and proud of the staff and volunteers who put so much time and effort into ensuring the excellent standard of information given out by the HMSA.

And honoured that my work has (with their help) been deemed to meet their standards.

Thursday, 3 October 2013

An understanding.

One of the best things about having friends with disabilities is that you can say you are doing fine and they understand. And you never have to explain why you don't have the energy for going out even when you've just said you are doing fine.

Because they know 'doing fine' means 'symptoms are within standard range considering that I've just eaten/had a shower/done the washing up/failed to sleep last night'.

Sunday, 22 September 2013

ReImagining Accessibility - thoughts on a logo

There is a competition in Canada open to students, aimed at redesigning the accessibility symbol. Because wheelchair use only represents a very small proportion of people with disabilities and is, lets face it, rather dull.

There was also an article on BBC ouch a couple of days ago about redesigning the accessibility logo.

On one level I like the competition. It shows that society is starting to be uncomfortable with routinely depicting disability as helplessness and passivity. Let's face it, when the standard symbol is the image of disability people see most, it isn't surprising that they see it as scary and something that must be categorically awful to live with. So hey, the change could be positive. [Part of me resigns itself to much hype and over-thinking about inclusion. I don't like talking about inclusion. I don't like people making an issue about how good it is that I am 'included'. I like to be me. "Include Hannah? What do you mean? Of course she's coming!", where no-one minds my wheels or other quirks, they are just registered as "choose venue with lift/elevator, no cobbled pavements, and good air con".]

On another level I am slightly annoyed because I can't enter - seeing as I have never been, am not, and never will be a design student.

But on yet another level, I think the competition risks missing the point.

A single symbol is not practical. For example, I, as a wheelchair using disabled person, always look for the access ramp. Someone with a hearing impairment might be looking for access where you don't have to press a buzzer and listen to a question in order to be let in. Someone who walks but finds it hard or tiring might be looking for the shortest route and not mind the odd step on the way.

In many places, these requirements will be met by different physical arrangements - different routes. If you try and make some funky symbol that includes them all you'll just confuse things. As far as I am aware, there are many different symbols in existence - I've seen the impaired hearing signs, visually impaired signs, symbols with walking sticks, and needing-to-sit-down-symbols. I've seen standard wheelchair symbols and sporty wheelchair symbols. Why not let people adapt the standard symbol to the relevant situation. The current accessibility symbol would work well on the entrance to the dentist, the sporty version I saw once would work well at the Gym. I think this is appropriate and practical and useful.

But as a symbol that represents me, I use this.

Because it shows life.
It shows joy.
It shows acceptance.
It shows a valuable member of society who's difference is no big deal.

But not everyone has a wheelchair! And not everyone can raise their arms above their head. And what about cognitive and hidden disabilities?

True: but tell me, when you see the symbol, is the first thing you think 'disability'. Is it? Or is your first reaction to smile? To see the representation of human being so clearly full of life. Yes, the image is still on wheels, but given the over-riding sense of life, belonging, confidence and value, perhaps all the wheel does is acknowledge a difference - it is a symbol not a dictionary definition. What type of difference is irrelevant. It is just a difference.

Anyway, I'm not surprised that people with other disabilities don't relate to the current lifeless symbol. I don't relate to it and I AM a wheelchair user!

I admit, I am totally biased. It is my design - of course I like it.

A symbol that says 'I'm a person, with a different normal, accept me as I am and we'll do just fine.'

But I'm not the only one that thinks it isn't just for wheelchair users. Many people who use my stickers do not use wheelchairs - some don't even have mobility issues. Like the hearing-impaired chap who cycles round London with my symbol adorning his bike and helmet.

And the kid with ASD who thinks it is awesome that he is one of the people that this joyous symbol represents.

So anyone reading this who is planning on entering the competition, please don't get hung up on the disability side of it but remember the people full of life and potential, with differences which, when recognised, accepted and common sense solutions applied, need not be barriers to a fulfilled life.

[P.S. This symbol is copyright protected. Please don't use or print it without permission. If you want to use it: ask - this symbol is my company logo but I do grant permission for it's use in certain circumstances. Or buy and use the various stickers available here.]

Monday, 9 September 2013

Cold perspective

I have a cold.

And while part of my brain laments how awful and full of cold I feel, how I can't think straight, and knows that curling up with a blanket and hot drink is the only way forward, another part of my brain is quietly relieved.

Yes. Relieved.

For the past week my PoTS has been playing up more than I'd expect. Nothing specific, just unsettling. I don't mind bad patches when I know I've overdone it, or the weather is too warm, or I haven't been doing my physio or I'm sat like a sack of potatoes - because I know why I'm bad. I've learnt roughly how my body reacts to things and it's really empowering. So when it starts being grumpy and not responding to my usual strategies and I can't work out why - this is really unsettling.

But my PoTS and EDS aren't mysteriously spiralling out of control - the brewing infection totally explains the past week. I just have a cold. Which, even better, is just a normal thing that people get all the time.

So while in one way I feel awful, in another way I am greatly reassured.

And I shall go back to my sofa, curl up contentedly with my tissues and vitamin C, and let my immune system work it's magic.

Wednesday, 4 September 2013

Living with Poise

I was trying to explain how managing my HMS/EDS affects how I sit and how I move.

Like if I am standing, it is with the kind of body awareness and concentration found in a gymnast on the beam. And sitting; to minimise my symptoms I have to sit with good posture. Not like I have a poker in my spine - in some imagined concrete casting of 'perfect posture', but like alive and ready to move with all my muscles switched on. This is how I have to be to keep my joints aligned and limit blood pooling in my abdomen (otherwise my blood avoids my brain, which is highly inconvenient.)

I concentrate on body position all the time (my proprioception isn't accurate enough to work out body position automatically)- only of course I don't remember to all the time. So I forget for a bit - reverting to the spuds position, then symptoms start to build and I remember and switch back to good posture again.  It's taken years -starting from sitting well for a few seconds -  to build up to where I am now, and will probably take work for the rest of my life. But it's worth it.

Anyway. I was trying to explain all this to a dancer, who said simply "I'd call that 'poise'".

And there you have it.

"to rest in equilibrium; be balanced." 
"suspense or wavering, as between rest and motion or two phases of motion"
(Definitions from


Balanced - but ready for movement.

That is what I do. I am learning to live with poise.

Friday, 30 August 2013

A Happy Reminder

I have medical stuff going on, but it is me, with my talents and skills in tow making the choices. I am, as Carla Spear rightly says, NOT my illness, and her 'Bus' analogy is just so apt. It is my choices that define me and shape my life.

And even if I have a patch where I cannot do much at all and find myself crashed on the sofa - I can be glad for all the things I did which resulted in me being there. And of course learn from it to improve my pacing in the future. But a day of doing very little is DEFINITELY worth spending a couple of hours helping babysit my nephews and nieces, or shopping with my little sister.

Oh, there are many "Can't"s in my life, but also many "can"s. And yes, some of my "can't" things are things which for most people are "of course" things. But I there are so many "can" things - from dancing to facebooking, from doodling to product design and sales, but one of my favourite "can" things is managing my conditions. This is something I always can do.

By managing I don't mean "Waltz around doing whatever I want when I want with no consequences". Of course I have consequences. Which can be anything from pain to a full on attack of the Zombies. 'Management' is about accepting where I am now, learning how my body reacts, and making smart choices (and in my case involves physio, pacing, wheels, medications, more physio, more pacing, salt, compression stockings and lots more). Plus I think that a degree of thinking differently - not focussing on the 'can't' and 'but I want' and 'it's not fair' (like not being able to work/go out when I want) but on what I can do - is part of managing a long term health condition. 

Life can be rewarding and fulfilled even when lived with limitations. Can't exists, but I'm too busy with Can to worry about it.

And now the wall of my office happily reminds me of these every day.

As well as reminding me that, quite simply:

I love my job.

Tuesday, 13 August 2013

'Good Deed' Smugness.

You know how annoying and frustrating it is when someone offers help, which isn't actually helpful, but they are so convinced that they are doing a good deed that you can't actually stop them or change their mind?

Well, I think I shall have to be more patient with them.

I'm not saying I'll always sit back and let them help, but I'll try and be more respectful and positive in my refusal. Why?

Because yesterday I did a 'Good Deed' helping out another disabled person.

I was shopping at a petrol station (M&S food. Mmmm.) and heard someone beep their horn. And again 3 seconds later. Then lots of times in a row. I looked through the door and saw a van with the occupants trying to get the attention of the staff - waving their blue badge and trying to ask for assistance. I went to get a member of staff, but then one walked out past me. I assumed they were going to help. But no. More beeping - I looked out and said staff member had gone off to do their own thing. And still none of the staff were the least bit interested in the beeping or the blue badge being waved at them. This time I accosted a member of staff and politely asked them 'Do you realise that the beeping is someone with a disability asking for assistance?' Staff went to help, problem solved.

And guess what? I felt all good. I'd helped. I felt needed, useful, like a good citizen. And smug. Yes: self-righteous, 'better-than-everyone-else' conceit.

But never fear, the smug delusion quickly shattered as I approached the vehicle and said:

"Hello random stranger, have a business card, you might want to buy my stickers."

Sunday, 4 August 2013

"Hello Aunty! can't walk very well."

Sometimes I wish people would keep their childish, matter of fact, accepting ways.
So comfortable with the concept of me being different and so unafraid of saying it how it is.

Thursday, 1 August 2013

Nursing, bowel movements - a patient's thoughts.

On twitter, the #WeNurses were having a chat about poo and constipation.

So, in a very random blog, because I couldn't work it out in 140 characters.

Complex patients who are on a ward for a while who are used to self managing their medical needs at home might not flag up issues with constipation. They may shrug off the issues as insignificant.

Because it IS insignificant - even though it is also really important.

I know this doesn't make sense, but what I mean is:

I have probable delayed gastric emptying, and always have issues due to bowel laxity (a common complication of Ehlers Danlos Syndrome) and medications. I also have severe HEDS (connective tissue disorder) and PoTS (autonomic dysfunction)

However, when I was hospitalised a few years ago, for 5 weeks, despite...well....concrete blocks being an appropriate description, I wouldn't have flagged it up with staff had they not asked my 'grade' on the bristol stool chart every day.


Because I was there for cardiac issues. Cardiac= I won't worry you with other stuff that is normal for me. So I would only raise cardiac issues unless pressed (or a joint had fallen off and I couldn't realign it - joys of EDS) I was there to get better at staying conscious. And satisfying though it is to do a proper bowel movement, quite frankly, when my heart rate keeps hitting 160 because my autonomic system is throwing a strop, I couldn't care less about a toilet stop!

But if you ask, I'll tell you.

I tell you 'normal for me'. Which actually can be anywhere between grades 1 and 6. And which often requires intervention at home (sups, laxatives, massage, manual assistance). So it means nothing, other than my bowels are  a little messed up on occasion.

But if you ask me what the grade is - you will know accurately, and can take action if needed.

Long live the bristol poo chart!

Yes, there really is a Bristol Stool Chart - a chart of poo.

Tuesday, 30 July 2013

All for a footballers knees

I was at the Hypermobility Syndrome Association's family fun day at 'The Village' Elstree (near Stanmore) on Friday.

That bit of the day was both fun and tiring. And I hope the parents and families who attended found it useful.

One highlight was the Spanish football team Rayo Vallecano de Madrid turning up to use the room next door - fighting their way past the crowd of hyper children and the enthusiastic kids entertainer.

So far, so good. Right up to when a group of us HMSA staff were having dinner.

Then it all went surreal.

I kid you not.

"Hannah, look at his knees Hannah, look!" Yes Donna, they are hypermobile.

And as the poor innocent footballer turns to leave, up leaps Donna, Senior Medical Liaison Officer: "Can we have a photo of your knees - I'm not interested in you, I just want your knees."

Seriously? I mean, it's not exactly the best chat-up line!

Awkward moment of complete bewilderment, while slightly embarrassed interpreter tries to explain what this mad English woman wants.

Fortunately the interpreter had asked Jeff (membership secretary) what our event was, so he knew a bit about the HMSA and the work it does - which may have prevented a call to the police and eviction from said restaurant.

He agreed. Within seconds 2 of the most senior members of the HMSA team were kneeling on the floor in the Hotel restaurant taking photos of the knees of a Spanish footballer. "Shorts up a bit please".

I have never seen such bewilderment. Nor heard such a random request.

As the reality of what they'd just done sank in, we laughed until we cried.

In the gym the next morning, with no interpreter present, who should I meet....KNEES! We grinned sheepishly at each other and pretended last night never happened.

Then who turns up half an hour later at breakfast?


(I wasn't stalking him. I was there first.)

But on a serious note, those knees are going to help explain that hypermobility doesn't automatically mean disability, that with exercise and good management many hypermobile people can still be fit and active.

Whether I will get to a stage where I don't need a wheelchair is unknown, but what I do know is that I am fit and healthy - and make it a priority to stay so through exercise, pacing, and poise (active good posture) - ensuring I give my bendy body the best chance I can.

Monday, 29 July 2013

IPC Athletics and the Anniversary Games

I love athletics. But I think I love IPC athletics more (or Para-athletics).
I got to watch most of the World Championships, thanks to Channel 4 - it is awesome to be able to watch para-sport on TV. 

As usual, there were moments which stuck in my head and ended up as stickmen:
The grin was also there after winning the 100m - when fellow racer Mel Nichols (5th) revealed that Hurricane Hannah's secret weapon was her unwashed socks.
Hannah later insisted they were clean, even posting a photo on twitter..but I'm not convinced.

And there were the most awesome displays of teamwork - the T11 longjump never ceases to impress me.
The joy on athletes faces as they achieved their goals.

While others leave us speechless as they exceed all expectations.

Scott Moorhouse asked if I could do a stickman of him and Richard Whitehead - unfortunately I didn't catch Scott in action - this happened instead:
So, 'Last leg',  Is it OK to ask whether amputees leave their limbs outside their room like shoes? 

Then I saw Richard Whitehead's 200m.

Seriously, man, don't put me through that stress again! I had to hold my breath just in case my breathing slowed you down!

Talking of suspense, Peacock vs Browne: What a contest.

(Well run JP, you make the nation proud.)

And there was Alan Oliveira. And Josie Pearson, David Weir, Scott Jones, Libby Clegg...and so many more.

I confess to knowing very little about athletics really, but you know Terezinha Guilhermina? She runs so smoothly and perfectly. I think watched every race she was in - in both Lyon and London.

And talking of London, having been there in Birmingham a few weeks ago, it was ace seeing those golden blades race to victory. Complete with 'Guns' as he crossed the line - really made me laugh.

His baby daughter's pink ear-muffs were the best.

What wasn't the best was Channel 4's attempt at guided running in the inter-broadcasters relay in Lyon. You guys need some serious training!

 All in all, over this athletic week I have laughed, cried, held my breath, willed athletes on, cheered, and have confirmed beyond all reasonable doubt that: I love para athletics, and I want a proper go in a racing wheelchair.

(Just realised I haven't mentioned the able-bodied Anniversary Games. I enjoyed them too - GO MO!)

Wednesday, 24 July 2013

Mission: X8 Freedom #1

In May I discovered the Extreme X8, an off-roading electric wheelchair. I know there are various places which provide 'all terrain' scooters - but I can't use them due to arm positioning and coordination, plus lack of seating support. An electric wheelchair type positioning...that is another matter entirely!

The manufacturers commissioned me to do a logo. I said only if I get to try one out. And if they were as good as they seemed, I would attempt to get local outdoors-y places to buy one for me (...I mean: for visitors...) to use. So Mission: X8 Freedom was born.

On Monday the mission started for real with my first test drive at Whittenham Clumps - a nature reserve run by the Earth Trust.

Armed with a risk assessment and signed promise not to be a prat (being trained to enforce health and safety comes in handy sometimes) we met in the carpark. Richard from, Andy from Earth Trust and me. (If anyone would like to see the risk assessment to help with an X8 trial elsewhere, email me)

The carpark was in the middle of no-where. Fields and woods stretching into the distance on every side. Places frequented in childhood and teenage years but now out of bounds, suddenly tantalisingly close.

Then I switched from my chair to the X8. Footplates adjusted to suit, 2 minute explanation of the controls.....and the world changed forever.

For the next hour or more, while Richard and Andy followed discussing battery life, gradients, maintenance (and butterflies), I explored: rediscovering old haunts, climbing hills, admiring the view while the walkers to caught up, through wild flower meadows and long grass up to my elbows, along the unofficial woodland paths created by wandering cattle, down to the moat of the ironage fort - now filled with butterflies.

I had forgotten how magical it can be to go through summer woodland, hearing only insects and birdsong in the soft dappled shade, then suddenly find oneself in a clearing where every leaf is vivid green against a clear blue sky, the bleached dead wood of a lighting-struck tree shining in the sun.

Sometimes fast, revelling in the freedom. Sometimes slow, taking in the sights, sounds and scents.The quiet electric motor barely noticeable. It is years since I have been able to 'walk' without scanning the ground for obstacles - constantly planning the best route for my chair, but half way through I realised: I didn't need to any more. I could just go. Paying no more attention than your average healthy walker - slopes and steps warranted some attention, but standard undulations were completely irrelevant. Unless you have experienced it this is hard to explain....perhaps it is like spending years walking on tightropes where every move has to be planned and precise - then suddenly switching to solid floors, which you had forgotten even existed.

I thought it would leave me exhausted with the effort of keeping my joints in place, but it's ride is surprisingly smooth - more gentle bouncing rather than the 'ancient Jeep' style jolting I expected. The seat is supportive, and despite being 3 inches wider than I need I didn't slide about or feel insecure at all - despite the terrain! I only used a lap-belt, but there is also a harness option.

I'd been prepared to find that some areas were inaccessible - Iron age hill forts were not designed for wheelchair users! But I went up the steepest part of the hill, and down the steepest path Andy knew of - complete with makeshift wooden steps. True, I needed a bit of help from Richard in navigating them, but that was my limitations, not the chair's, and I suspect that someone nearer to the chairs top weight capacity of 28 stone (I think) might not manage the steepest side of the hill, and the actual sides of the moat round the fort which an able bodied person would probably have to bum-shuffle down were out of bounds. Otherwise I honestly think that the entire site is accessible in an X8. Without needing a single tarmac'd path.

It was beautiful.

It was freedom.

It was, in wheelchair terms: inaccessible.

In X8 terms: it was my world, to go wherever I pleased.

Earth Trust is now seriously looking into getting one (Or two? hint wheelies sometimes have wheelie friends). It is a process that will take a while, but if I can help them I will.

I am already thinking up other places to contact about having an X8.

If anyone wants more specific or technical information on the X8, contact If you want more information from a users point of view, especially if you are considering getting an X8 for use by visitiors to your site, do not hesitate to get in touch with me via email, facebook, twitter, or the comments section below.

If you would like to encourage somewhere to provide an X8, feel free to link/refer them to this blog.

Thursday, 18 July 2013

Trains again

Every time I travel on a First Great Western cross country train, I smile.

They were designed to match my boots.

Because my boots are seriously that famous.

Tuesday, 9 July 2013

Wheelchair Athletics at Stoke Manderville

To celebrate winning the logo design competition for Hannah Cockroft (Paralympic Champion and World Record Holder) I went to a British Wheelchair Athletics Association meet at the Stoke Manderville stadium to meet her.

Loads of wheelie athletes. Wheels were everywhere. Racing wheels, standard wheels, some with people in, some without. Wheels were definitely the normal mode of transport. Although various staggers and bum-shuffles were also in evidence and totally unremarkable. The able bodied folks distinctly on the sidelines as the wheelies chatted, compared, competed and achieved.

Racing wheels!! Oh my word. Racing Wheels! I want to play!!

There was the relaxed feel of....something almost like a school sportsday. Picnics and parasols filling up the strip of grass alongside the track.

I'd just arrived and was looking round in a moment of shyness thinking 'what do I do now?' when I heard a voice "Hannah!!" I turned round, and there was Ben's mum! As in, Ben the young VIP wheelchair athlete I'd met at Birmingham last week!

I was instantly absorbed into their group. We cheered Ben on in his races. And guess what? In the 400, he did a Personal Best by 3 seconds - not only that, but his brake had jammed so he got a personal best when pushing against a jammed wheel! A PERSONAL BEST with the BRAKES ON! Well done Ben! Impressed is an understatement.

During the lunch break, Ben (who's debt I shall be in forever) allowed me to borrow his racing wheels. RACING WHEELS! Helmet and glove on, [LEAN FORWARD OR YOU'LL FLIP!]wedged into a seat 3 sizes too small...I was in heaven. Ben's coach took me to the car park [LEAN FORWARD!]. 

Where I promptly left him behind. I was flying!!...until the emergency stop before hitting the cars at the to turn around.....pull slight wheelie, hoik wheels round. Repeat. [lean FORWARD!!!!] About 15 times. Those things are not easy to turn!

Accelerating off again... hang on...that's Hannah Cockroft by her car...she can wait...this is FUN!

I can't describe it. The speed, the power, the responsive-ness of the chair, the 'play at being a pro athlete'. Sheer joy on wheels.

I could have spent hours in that carpark, playing in that chair. But alas, VIP Ben had a race to do so I sat with Hannah Cockroft, a different Ben (Ben R) and Lauren. And chatted. About all sorts. Hannah C might be paralympic champion, but she's totally down to earth.

And Hannah said I had good arm speed. Smug. And she promised to try and find out from 'fount of all knowledge' Joe if there are any wheelie racers near me/racing wheels I might be able to borrow occasionally.

And back to the trackside ready for the next round of racing.

Then I had to leave before my coolvest ran out. Which, incidentally, got a lot of interest from athletes and coaches.  (for more info on my cooling vest, see here). But not before I got a photo of me, Hannah, and a T-shirt with my 'Hurricane Hannah' logo on it.

Oh, and I may possibly have given her a copy of 'You know you've been pushing it when...' on condition that she tells everyone it's awesome and they should buy one. Shameless advertising.

It was a really lovely day, and I plan to go to more events like that in the future. Maybe I'll even race in one some day.

I don't think my joints or heart would let me take up wheelchair racing as a competitive sport, but I intend to find a way to do it as an occasional recreational activity. Please, mystical Joe, find me a way!

Spam Amusement

 I don't usually bother opening anything that looks remotely like spam, but I wasn't properly awake.

And then I laughed.

This sender genuinely thought I would believe them when they wrote "I am not a spammer - I have looked carefully at your website and know what you need" - and then wrote this:

"I thought you might like to know some reasons why you are not getting enough Social Media and Organic search engine traffic for Your website is not ranking top in Google organic searches for many competitive keyword phrases." [type in 'disability stickers' and I'm on the 2nd page of google. Twice. Based entirely on my own work - not paying for rankings boosts]"2. Your company is not doing well in most of the Social Media Websites." [Interesting definition of 'not doing well' there. Over 1000 twitter followers and approaching 1000 FB fans, many of whom spend money repeatedly in my shop, and lots of customer interaction in both places, and customer recommendations and RT's.....?]"3. Your site is not user friendly on mobile devices." [people manage to spend money on it from the mobile devices, so clearly not such an issue after all.] social media presence is the reason for my business being viable. Not only is it where most of my business stems from, it has led to commissioned pieces, my winning a logo design competition for a multi gold-winning paralypian (Hannah Cockroft), and Channel 4 paralympics wanting to use my cartoons. Are you telling me that top athletes wearing my work and national TV channels asking permission to use my work is evidence of failure? Oh, and I've built this entire business with an annual advertising/marketing budget of approx £100. Which mostly goes on posters and signage for events.

And one final piece of advice: if you really want me to believe that my ability to be found on the internet is so terrible, don't tell me "I found your site using Google search"

Thursday, 4 July 2013

"I don't see your disability"

You don't?...this could be really awkward if we meet some stairs.

On the other hand, they'll never catch me based on your description!

Ok, I know people are trying to say "I don't care if you're disabled or not. If you're interesting I'll hang out with you - otherwise, get lost." or "what's your disability got to do with this?" or "I'm not daft. I don't rate people's value based on their ability to tie shoelaces." So why don't they just say that?

Fair enough if a) the speaker has a visual impairment or b) the disability is genuinely an invisible one, but otherwise: No.

Why is 'not seeing' disability a good thing. As if it is shameful, or embarrassing or something to hide.

Disability isn't inherently negative. Nor is it inherently positive.

It is a normal.

And you can't accept something you won't acknowledge.

Disability may mean doing things differently, but it certainly doesn't stop you living a rich and fulfilled life as a valuable and valued member of society, so why this strange avoidance of it?

You see hair colour, shape, clothing - and they are all different, so why not admit to seeing disability?

Because if you STILL won't see mine, you are going to create some seriously awkward moments where the different approach I take, which works perfectly for me, collides with your inability to acknowledge my difference.

I'm differently normal.
But so are you.

Get over it.

Differently Normal wristbands from
[Edited to add: Just thought of another suitable use of the phrase. "I don't see your disability as a problem." I have no objections to that :D]