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Dining room

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Christine is one of our regular writers – she focuses on topics related to eating disorders.

My toes feel cold against the blue linoleum floor. I smile as I think of the word – linoooleeeium. How it curves and gloops along my tongue like the spread on my overly buttered toast.

This is my new hobby. Saying words verrr-yyy slooooow-ly. Feeling everything verrr-yyyy sloooooow-ly. Doing it all slowly. There is a lot of free time on the ward, and it needs to be filled. I fear that it is turning me more mad.

I have been here for eight days now and time is etching by at a frail pace. So I have to find ways to fill the time. It is almost a game – getting rid of the eating disorder but creating new disorders and habits and oddities. Just to amuse myself.

Although there are plenty of eating disorder habits to be picking up too. It was like chucking an alcoholic into a pub full of people intravenously consuming vodka, or asking a gambling addict to go cold turkey on an all expenses trip to Vegas. A strange place to put someone struggling so.a

My spark is being snuffing out. Not like a candle. Nothing so poetic. More like I had been a sizzling firework threatening to skid in any direction, uncontrollable perhaps, but exciting. And now, now a dog pissing down on me to keep me quiet.

I count the crumbs on me plate. 17 small white bread flecks. Not too many. Not too few. Slowly.

A crash alarms me. Turning round I see that the new girl Alison had thrown the bowl at the wall. ‘I’m supposed to have 200g of beans.’ she screeches. ‘That looks like 220g.’

The autumn murk outside seems about to burst through the window panes as the dense pressure builds in the room. I panic, as I simultaneously roll my eyes. I was going to turn crazier here surely.

The poorly tuning radio crackles as the introduction to ‘Walking on Sunshine’ kicking in. I feel a surge of positivity ignited by music. I start to tap my feet under the table, moving, a surreptitious piece of defiance.

‘What’s your favourite song?’ I ask Joan, sat opposite me, trying to distract myself from Karen’s plate of mushrooms, the beans dripping down the wall and Mark counting out every pea before he would eat it.

‘I don’t like music.’ she said, pulling out a cheap condiment packet from me pocket and squeezing neat lurid mustard from the plastic packet on to her tongue. I can’t help but stare at her. I know I don’t eat normally, but surely?

Oh. I’d already tried films with this one. Holidays. Books. Names. Fruits.  She didn’t like anything. Miserable cow. Although she had a point. This was a pretty rubbish life, especially if you had been living it for 43 years like Joan. I wonder if Joan had always had puckering lips, or if they had just become an habitual expression. Like the wind had blown in the wrong direction one day and she had been stuck with a perpetual expression of gloom. If Joan was a cartoon character she would be one of those pictured with a grey cloud above her head at all times. She has a deep obsession with American crime programmes, and liking nothing better than a script filling with the words murder, savage and brutality.

She pulls out marmite from her other pocket, peels off the lid, and sticks her tongue in the little brown pot.

Mark on the other hand is a talker, but as a man institutionalised through and through, his talking is all about the system. He knows everything and how it all works, and loves to remind the other patients of his superiority. It was weird how the usual hierarchies were subverted. I knew they would be competing over who could eat the less, but was surprising at how much being in a hospital was seen as being a good thing. It is a complex system. Karen gets points for having been in a unit for the longest time all told, 46 years. Mark won for the most admissions, 34 throughout his life, although this was partly due to the fact that he has discharged himself so many times. The young Egyptian girl Sarah had been on the tube for the longest time before this particular admission, although Litz had once been a coma for seven weeks, so is ahead in that way. Clara was eating the least, so was the sickest right now. Or maybe the new girl was, looking thinner than us all.

It is so tough, to keep looking out of the window. To remember that every bite is a bite closer to freedom. To not get sucking in. To leave the lifers behind and break out. Voices whirling around me. I won’t listen, and I don’t want to. Outside pigeons tiptoe down the tiles on the sad looking roofs. The sky is heavy, like a grey handkerchief all creasing and sodden with tears. The wind blows through the branches with little leaves flickering like coins in the glint of the wet raindrops. Towering chimneys and severe brick walls make it look like factory, not a place of warmth and nurture.

The nurse supervising us looks away. Clara shoves a handful of creamy potatoes in her pocket. I look around to see if anyone else has noticed. Or cares. Mark was trying to cut his meat into exactly a dozen pieces, Sylvia had counting all her peas and was now counting them back down again as she ate them one by one. The nurse was still in a daze.

I stare at me plate, the people around me, and the place. Shuffling along in cheap slippers, with eyes sapping of life and weak with fatigue, limbs that no longer working and a mind wrapped up in the ferocity and malice of an eating disorder.

Fuck.

 

Prototyping Supertitle

A few months ago I showed you this project for school students with English as an additional language. It was designed as a subtitling intervention to boost both educational standards and community integration.  I’m quite excited about it. Today’s article is about the initial prototyping stages, I’m going to talk about both the things that went well and the things that went wrong.

Finding Schools
For White Water Writers I regularly visit groups of teachers to talk to them about that project.  Over the last few months I started adding an part to the presentation that  essentially said “Hey, so that project is cool and tested and reliable. If any of you are interested in an completely untested and possibly-won’t-work idea, then here’s a 30 second elevator pitch.”
A few schools contacted with me to say they would be interested. I picked a local one in Islington talked the ideas over with the co-ordinating teach and I started to pilot the project with a group of Polish girls (it’s an all-girls school).
The first pilot session
For our first pilot session I provided a few handouts and wrote some simple code to assist. The test case was an episode of ‘The Musketeers’ and I produced a lesson plan with a suggested workflow. I had a very small group (only three) who worked in Google Docs to directly edit an XML file.
Screenshot 2015-05-21 12.02.19You can look at the original file here if you really like.
Students broke down the meaning of the English wording by working as a team, then they discussed the translations, the sense and the meaning. They chose words that were relevant to the age of the characters and their social status. It was clear that they were stretching their knowledge of both languages while also developing their narrative. It went better than I could have imagined.
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Iterating the process 
The initial attempt was wildly successful, and the fact that we piloted on a weekly basis has meant that each week I was able to present the students with a more and more streamlined process.  So on the second week they were editing a more structured Google Spreadsheet rather than a XML file.
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By the time of third week I had added some scripts to make the transfer to a moving image easier and some highlighting code to make things easier to work with.
For the last few weeks (as the group grew) I added some examples of machine translation of each bit of the subtitles (I’d noticed that the students were occasionally resorting to looking up words) and while the machine translations are wrong very regularly, they do allow the students to get that word that is on the tip of their tongue when they are translating properly properly.
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That’s the technological changes. We’ve also changed the workflow. The translation method that instinctively appeals to me is to keep playing small clips of an episode to hear the tone, or to work from a handout formatted as a script,  but this was some distance away from the way the translators wanted to work.  If anything the students would rather do the translation and then watch the episode –  so we changed how we present information.
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Each week I’ve been able to get a stronger idea of the level of television program that works well, and the amount of text that a group can get through in a hour.   With our prototype group we started ambitious and worked down until we found a level that the kids could really manage in a one hour session.  I now realise that was backwards. What I should have done is started with some really simple programs – preschool and primary school style (perhaps several in a lesson) and worked our way up as the kids got used to the methodology.
Co-design
This prototype phase is an important part of our co-design strategy.  For example, one of the things that wasn’t obvious to me or the co-ordinating teachers was that students aren’t necessarily totally bilingual. Depending on how recently they came to the country they have a greater or lesser proficiency in either Polish or English.  This manifested in a very instinctive ‘production line’.   The students who had grown up in the UK provided much of the English context around the words and the students who had moved here recently provided much of the subtle distinctions in Polish.  It was a fascinating thing to watch happen.
Screenshot 2015-05-21 13.47.53
Showstopping
For the final week of the prototype (at which point I think we’d reached nine translators). The translators picked a episode from a TV series and invited parents around to watch it with subtitles.

There are several great things going on here.  Neither I nor the teacher had any knowledge of Polish, and so the student knew that  a) we weren’t going to be any help and b) we weren’t going to get the blame if someone snuck something rude into the translation. We were trusting them completely. More to the point – the deadline is a hard deadline.  There parents are definitely turning up, and it’s going to be a pretty noticeable if the subtitling goes a bit quiet…

The students performed amazingly.  The translated, proofread, rewrote, altered, worked thought. Some of them took on organising roles and every so often there would be a quick group conversation about such things as ‘Do we change character names to their Polish Equivalent?”

…and then the parents came.  We took over a glassroom with a dataprojector and… everything worked. It just worked.

Screenshot 2015-05-21 13.58.48As a group we watched right the way though an episode of ‘Eve‘ correctly subtitled. It was wonderful.  Once it finished I read the audience (with translation) the audience a congratulations message I’d got from the Series Producer of Eve, which got a really sweet reaction.

Next Steps
What’s been clear so far is that, like TooManyCooks, there’s a minimum size of group for this process to work.  However, we’re yet to work out exactly where this is, and how much it changes with different age groups.  I’ve also got to do a little bit more work on making the technology usable.  Currently I need to be at the school every week to have the more complex bits of the workflow working, but once that’s out of the way the teachers will be able to run the system directly.  And once I’m out of the loop we can expand much much faster.

Hidden Disability Symbol

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Laura Bryges talks to us about the Hidden Disability Symbol.

In 2009, I introduced the Hidden Disability Symbol on Facebook. This was four years after a car accident that left me with a traumatic brain injury, prolonged post concussion syndrome, major depression, fibromyalgia, and chronic pain. And now, in 2015, I am proud to say that the symbol is thriving.

The symbol was my attempt at making my independent forays into the world feel a little more safe and enjoyable. Noise and busy places cause neuro-fatigue, leaving me slow to respond, overwhelmed by my senses – especially movement and sound – and needing to find a quiet place. Restaurants, stores, buses, waiting rooms were all overwhelming to me. Add in muzak, babies, or people making requests, and I shut down.

So, applying my limited desktop publishing skills, I designed a symbol on a wallet card to help me communicate my needs for me – just in case I couldn’t do it myself. The result was the first hidden disability symbol. A figure filled with black and white checkers on a disability-like blue background. But the checkers soon had to go – they were too much visual information for many people.

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With lots of input, I developed a number of alternate designs, and did an on-line survey to figure out just how good the whole symbol idea was. That was in 2010. The survey results told me people liked the idea, and felt that both a symbol and a wallet card would help. From 6 proposed designs, the current one  — number 2 — was the most liked.

 

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Back in 2009, while attending a conference about accessibility to art exhibitions, I was informed that it was politically incorrect to label a person as disabled. I have no idea what the politically correct choice is now. But, in truth, I do not care. I need to label myself as disabled if I am going to be able to go out into the noisy and busy world, on my own and feel safe and secure. And it seems that 5.4k followers feel the same way. There has been no hesitation to use the symbol and the ‘Hidden Disability’ descriptor on their part.

image4Born in 1960, I witnessed the 1969 introduction of the International Symbol for Accessibility (ISA). I saw formerly house-bound or institutionalized people enter a more welcoming and accommodating society. I witnessed how steadfast and effective advocacy brought social awareness of the needs of the visibly disabled, and how that awareness became acceptance, created legislation, and evolved into societal support. But now, with 10 years of hidden disability experience under my belt (or should I say hat?) I must ask if societal support has gone too far. Two of the most common issues page followers have made comment about is having been verbally and physically accosted by ill-informed members of society who take it upon themselves to protect ISA parking spots or seats from people who are not visibly disabled.

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Thus, many users of the Hidden Disability Symbol are happy to use the label and the symbol – and are now printing it as a window decal for display in their car, or pull it out of their wallet when being challenged. I think they appreciate the versatility, adaptability, and individualization of the symbol. Descriptions of the user’s needs can be printed on the back of the wallet card, and words of the user’s choice can be printed below the symbol. My wallet card says “Brain Injury”.

People using the card are expressing thanks, with an intense level of excitement, or relief, that something out there is going to help them. I have been moved by degree of appreciation people have sent my way. And all I did was have an idea and post it on Facebook!

The digital file for the symbol can be copied and used for personal, non-profit/non-commercial use. And it is being well used. Following some recent media coverage in Canada, the symbol is now in use in North America, the UK, China, South Africa, Hungary, Australia, New Zealand and one user in Belgium commented that she passed another user’s car with the symbol in its window. Small world! I have complete faith that the symbol will continue to go where it is most needed and useful. I want it to find its own path.

If you, or someone you know has a hidden disability and wants to use the symbol, just go to my Facebook page, Hidden Disability. Please post a comment about where you live, and share your success (or not) story.

For those who may have unique uses, questions, comments, or ideas for the symbol – please email me at hiddendisability@rogers.com. It may take some time for me to get back to you, but I eventually will. I really want to get feedback and start discussions about the symbol’s future.

Low point

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Christine is one of our regular writers – she focuses on topics related to eating disorders.

 

‘You need to be seated girls.’ Carly says. She points to threadbare chair lent up against the wall. We’ve gone for our ten minute fresh air break, but it is raining and so we can’t go to the bench in the garden. Instead we are stood in the foyer of the old entrance to the hospital, next to three abandoned vending machines and a poster advertising the benefits of regular breast checks dating from 2009. Only one vending machine has anything in it – a squashed bottle of water. Even the food facilities are anorexic.

‘If we sit on that chair’ I reason, ‘then we don’t get fresh air. I thought that was the point.’

Carly pauses.

‘If I stand here,’ she says, positioning herself in front of the automatic doors, ‘then the doors will keep opening and the air will come in.’ She stands, arms outstretched, the doors etching inwards 8 inches, then back again. In 8 inches, then back again.

I look at her, a slightly stunned expression on my face.

‘Or you could take the chair out.’

So we pick up the chair and position it in front of the double automatic doors, under the awning. Two psychiatric patients sitting on a thrown out office chair in front of a once busy, now deserted hospital, staring blankly at the long driveway ahead of them, where glimpses of brightly coloured adverts on the sides of buses occasionally pass into view.

A grey mist of fine drizzle fills the air.

‘I wish I was that pigeon.’ says Laura. ‘Free.’

I laugh. I want to cry.

‘That’s how bad things have got. We want to be a pigeons. ‘This is a low point. I hope my life never gets any lower than this.’

We burst out giggling, the caustic humour of the situation striking us.

‘It’s so depressing.’

‘We can’t even take a photo of it.’

From the other angle, the blue sign, on the other reading ‘Mental Health’ creates a nice frame around us. It’s perfect. Terrifyingly and depressingly so.

‘I wouldn’t tag myself in Facebook if we did.’ I say.

A police van drives up the road towards us. This happens periodically, when someone on a section doesn’t return from their leave. The side door slides open and out jumps Sadie, in a white t-shirt and dirty jeans. ‘Come on then, let’s take you back to the ward’ says the policeman with her. She smiles and waves at us. This is apparently a normal occurrence.

‘Jesus.’ I sigh, sat on my seat, staring into the rain. Even he can’t help me now.

 

IsoSketch: read about and win!

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This year I was somewhat grumpily wandering around BETT (it having changed very little from last time) when I was accosted by a stallholder.  I grumpily tried out the product and found myself actually quite impressed with it as a simple but solid idea.  I’ve invited Mark to talk about the design process here, but I’m first going to show you the ‘what it is video’: 

https://www.youtube.com/watch?v=o8ua0UhvAMM

 (there are lots of other great YouTube demos)

Even better, at the end of this post, you’ll get a chance to win one! 🙂

 

Now, over to Mark! 🙂

 

It was a bleak northern October morning at the end of a long half term. Being the most technically proficient teacher in the D&T department, I’d been asked to demonstrate our new laser cutter for an upcoming open evening and was mulling over possible freebies to cut and give away to parents. Key rings? Spaghetti measurers? Trolley pennies? They had mostly been done, badly and predictably by other local schools doing the very same thing. Our laser was a branny. Clean, shiny and only recently installed by the bloke who goes around to schools showing them they can now make their own plastic rulers. There was the spark – why not create a drawing tool that was actually relevant to our subject and put some useful little design quirks into it at the same time? I was a Product Design graduate after all; time to kick the design brain into gear.

 

‘EasySketcher’ was the product of that morning, and was an overly complicated and easily breakable concept, albeit with the seed of an idea that would later become a tool dedicated to 3D drawing. I’d included a 120° angle for doing quick isometric drawings when it hit me that this function alone could be used to create and modify a cube shape, thus underpinning any 3D sketch through the simple but effective principle of ‘crating’. A door swung open in my mind and revealed an opportunity for a product that simply did not exist in a capacity that kids this age could access. A cure for “I can’t draw”!

Prototype

IsoSketch was born on a laser cutter soon thereafter, with several more prototypes being produced from ‘scrap’ acrylic that was conveniently under my control. The testing process then began with my own pupils – 4 ready made focus groups per day! Needless to say, they quickly realized this was a good idea, confirmed with cries of “that’s sick sir”. Lots of head scratching and 19 versions later, we had a winner.

 

I just had to work out how to afford an injection moulding tool. Luckily a group I’d been attending (Manchester Inventors group – MIG for short, or ‘the Masons’ as I lovingly referred to it) put me in touch with a gentleman who created the justification behind me being allowed a grant to help fund such an investment. Needless to say I smiled, shook his hand and took the quota that he was under pressure to shift from the Local Council’s regeneration budget. Production began in Blackburn in 2014 and hasn’t looked back since.

 

So that’s how it came to be, now for the why. IsoSketch was born out of teaching Design & Technology (Product Design, RM & Graphics) from Key Stages 3-5. The product addresses a part of the design process that is easy to overlook with an abundance of digital technology producing end results; the creation of a concept. Kids have varying amounts of patience, usually ranging from little to none. A kid who thinks they can’t draw will adopt that mindset until they see solid proof convincing them otherwise. A crap drawing looks crap, and this will continue to cement the mindset that D&T is not for them, despite the core purpose of design being the creation of ideas, not artwork.

 

The product works by providing a foolproof isometric guide to allow pupils to create super-accurate 3D sketches in very little time, which can easily be realized onto CAD thanks to their inherent accuracy. At the same time, the product works to teach the user how to construct a 3D shape with the ultimate goal of creating better sketchers and thus, confident designers.

 

Digital is everywhere. Schools are forking out for laser cutters, 3D printers, augmented reality software, exotic plastics and so on. It’s a crippling cost structure for a subject that used to revolve around relatively cheap materials and cheap, durable tools. I’ve been using the analogy that if 3D printing is the wedding, a good 3D sketch is the first date. If we want kids to produce meaningful products on 3D printers, we must equally encourage the development of 3D sketching skills. Without this, we’ll be laying the foundations for a nation of programmers and system controllers rather than designers and engineers. Drawing won’t go away, it won’t become old-fashioned. It will remain (as it was for cavemen) a vital form of immediate, recorded communication between the imaginary and physical worlds. It’s a critical stage in the process that ultimately ends in a finished prototype.

 

There. That’s my case for sketching, it’s as vital today as it was 50 years ago and 500 before that. Professional designers all sketch and so should our design students. The problem is we lose so many potentially great designers because they never get past thinking they can’t draw. That’s where teachers have become stuck in the past, with only so much as a piece of isometric grid paper to offer the “can’t draw” pupils.

 

IsoSketch is the old, new again. Breathing new life into a skill that is easy to forget when you’ve got snazzy machines spooling out mini-models of famous landmarks and people’s faces in 3D; but just as important – if not more so. Having an expensive wedding is one thing, but you’ll never forget the first date.

 

IsoBlister(1)

So we’ve got two IsoSketches to give away to a couple of lucky readers. On the 31st June I’ll generate a couple of random numbers and use those to pick a blog subscriber for the prize. So if you’d like to get your hands on one of the copies – then subscribe!

 

 

Bank card design for disability.

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Note from Joe – I get a lot of press releases in my inbox and I generally ignore them (my goal is content that is both original and timeless, and most of my readers are technical enough that I need pretty technical content; so press releases really aren’t the way to my heart)  On this occasion though I was interested in enough in a Natwest press release to contact them and offer the designer the chance to talk about the technical challenge of creating an accessible bank card.

Cards can be marvellous things, the comfort of knowing you can pretty much go anywhere and your card will work. You could be in a remote village in Africa, 35,000 ft. in the Air or maybe using one of the two cash machines at the South Pole (yes they really have those in the South Pole Base, they dispense US$). Have you ever wondered how it is all possible?

A typical Visa or MasterCard can be used at over 29 million locations and over a million cash machines worldwide. In order to make this possible the card schemes have all agreed to adhere to global standards for cards and the machines which take those including cash machines. In order to make sure issuing members and terminal manufacturers follow those standards each card design or terminal design needs to be certified by the card schemes. There are what is known as ISO standards for card shape, size, embossing areas and thickness and something called the EMV standard for Chip Cards.

Normally when you design a new card you are just thinking of the colour and branding, but any project where you propose changing the agreed global shape or physical attributes can prove challenging for a number of reasons. Firstly you need to prove that what you are doing won’t cause an issue with any of the terminals or cash machines globally and secondly you need to have the design approved by the card schemes to allow you to issue it. There is actually a third factor too, can it physically be done? Inside the card are electronics, for example a Contactless card has an embedded antenna which runs round the edge of the card. If you cut into that it won’t work for Contactless.

The impact of a card not meeting global standards can be significant. Not only may the card not work in certain locations or types of terminal or cash machine, but the card can actually damage the device or the device can damage the card. Cash machines in particular are sensitive to the card shape and embossing since they have ‘feelers’ to ensure the card is position correct and can be pushed back out safely to the customer.20150306_132628

In designing the Accessible Debit Card we worked extensively with our card manufacturer and the Visa card scheme to understand what was possible given the constraints. Visa suggested the notch size and its position since they had already done some tests which indicated at that location and size it would not cause an issue for card use. What had never been done before however was adding an embossed identifier near the edge of the card. Ideally we wanted it to be able to be felt without removing the card from the wallet. We looked at the top of the card but that area is fully utilised by the Contactless antenna and the magnetic stripe, neither of which can be embossed into with causing usage issues. The location we choose meant the embossing we well clear of all the card electronics but as near to the edge as possible for use in a side loading wallet. Even so we needed to produce a number of prototypes with different embossing positions and configurations. We tested those in a lab in London which has all the different makes of terminals and also in cash machines, initially RBS ones only on bank premises.

Once we had a number of concept cards which we knew would work we took them to the RNIB and they supported us in conducting customer tests where blind and partially sighted people tested being able to identify them accurately and gave feedback on the design. We worked together with them to agree a final design which met the needs of our customers and also the card scheme requirements. One thing which came out of that research was that many blind and partially sighted customers don’t read Braille so actually generic markings using a series of dots where the preference. We looked a layering ink to create ‘feelable’ markings but many blind or partially sighted customers also suffer from diabetes which effects their ability to feel very well so embossing was the preference.

One important consideration was that we wanted the card to work for blind as well as partially sighted customers so using colours and ink to define an identifier or a card orientation aid was not an option. We also wanted our blind and partially sighted customers to be able to have the same card as everyone else rather than a special ‘disability card’ which perhaps labelled them as being different. So for example if a customer has a Black Account they get the same ‘Black’ branded card as everyone else but with the supple features added to help them use it.

 

 

 

 

CommuniKate, AzuleJoe and the Awesome Foundation.

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The idea of launching CommuniKate as the first open licensed AAC page set was conceived exactly here, when Kate and I had dinner after BETT2014 (you can read my opinions of the event itself here).
So it was kind of nice that, exactly one year later, that Kate and I were invited to pitch CommuniKate to the Awesome Foundation.

The Awesome Foundation

If you are unfamiliar with the Awesome Foundation it’s worth learning more. Here’s the blurb from the website.
The Awesome Foundation is a global community advancing the interest of awesome in the universe, $1000 at a time.
 
Each fully autonomous chapter supports awesome projects through micro-grants, usually given out monthly. These micro-grants, $1000 or the local equivalent, come out of pockets of the chapter’s “trustees” and are given on a no-strings-attached basis to people and groups working on awesome projects.
(The UK version is £1,000 rather than $1,000)
The pitch events are wonderful.  Kate and I pitched alongside Board of Media, a performance poet, people with a concept for reusing food and Soundcastle. For most of the evening you are mingling with these guys and the trustees (who are all people who’ve made very cool things in their own right). So you have an evening of chatting to driven, open, wonderful and emphatic people.  In every conversation you find yourself saying “oh I know a guy who can help you with that” or people saying “Try Fund X, they are interested in what you do”.  To paraphrase Terry Pratchett “there’s nothing like being near happy startup people, it’s like giving your brain a hot bath”.
You absorb all the passion, drive and energy;  it really lifts you.

The Contest

After all that, the contest element appears a little bit separate… you’d certainly go home happy if they just didn’t bother to announce the winner.
Luckily, they did announce a winner, and even more surprisingly it was AzuleJoe. (and it really was surprising – no false modesty here, the other groups were good).
So we had a bit of a party.
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The Speech

For two reasons, firstly because we like transparency, and secondly because I like the speech, I’m putting the speech I gave to the evening here. It was very much under-rehearsed on the night and most of the best interactions of the evening were unscripted.  I like to think the pitch clearly sets out the problem, what we want to do to solve it, and what’d do with the money.  Beautifully, when the trustees announced the awards they said: “We’re giving you the award, but we don’t think you should spend it on that.”.
 
So. This is Richard.  He has severe learning difficulties, many physical issues, and behavioural issues that often result in violence.  
 
He’s also my little bother.  
 
Richard can’t speak or read. Until he was about 19 we managed on maybe 90 signs, mostly nouns.  It’s worth considering what your life would be like if you only had 90 words.  
 
Then, when he was 19, he got this.  It’s an AAC device.  AAC devices work like this: 
 
(Show this video) 
 
 
Suddenly Richard has 5,000 words,  it ab-so-lute-ly changed his life.  
 
The problem is that Richard isn’t alone. There are 32,000 people in the UK that would benefit from powered AAC.  Unfortunately there are only 9,000 people who do.  That means that there are 23,000 people who can’t choose what they want for dinner, can’t tell a doctor their symptoms, can’t tell their family that they love them.  
 
If you are wondering why do these people not have access.  This device was £5,000 at the time.  I saw devices at BETT today that were £15,000.  Communication is priceless, but there are families who have to choose between heat and food right now.  
 
So last year Kate, who has worked in AAC for about 15 years, came to me and said “I have a page set that has been working really well with my clients – I want to launch it worldwide, can you help?” and I said “Let’s talk about open licensing”.  
 
So ten months later we launched CommuniKate, a completely free, Creative Commons licensed page set that people could use on their own hardware.  Complete with manuals, online versions and testimonials. You’ve actually already seen it in this video. The response was amazing.  We’ve now got volunteers working on the code to improve it, and we’ve got teams translating it into Portuguese, Spanish, French, Swedish, Urdu and Arabic.   Kate had people she didn’t know the name of hugging her in the street.
 
I can give you a link, and you can play with it yourself inside of 20 seconds.  We think this is going to make a difference to thousands of people in the UK and we hope it’s going to make a difference to many more outside.  
 
So here’s the problem.  Free text to speech software sounds like this:
 
(play first recording) 
 
   and doesn’t support languages like Urdu and Arabic. 
 
A decent commercial service would sound like this:  
 
(play better recording) 
 
and it would be much faster.
 
But a decent commercial service and all of the licensing for this sort of thing costs around £700 and we don’t have that money.  We were hoping the awesome foundation might be willing to help.  
 
 
 

Waking up for the first time

Screenshot 2015-03-17 17.29.25A bell rings out. I slowly come to. I have slept surprisingly well, all things considered. I reach out my hand to search for my phone and do a time check. 7.50am. The light stings my eyes, and there’s an uncomfortable warmth moistening the small of my back. This quilt sweats.

I cast my eyes around the standardised room.

Rounded corners for safety, and beige walls, the terrocotta curtains, stark blue floor all slowly blurred into a sense of bland immobility. The bed is comfortable enough, its central position in the room surely being deliberate so as to ensure that no activity could take place around it. There was a wash basin, the tainted aluminium bowl sink reminding me of run down public toilets in faded sea side towns. Like those washrooms, the tap didn’t work. ‘To prevent washing away.’ Safety precautions mean that the windows don’t open, making for a warm stuffy fug. There’s an extra bar, to ensure that if we do force them open we can’t slip through. The bar is only 3 inches off the surface of the glass. None of us are that thin.

It suddenly hits me with force. I am here. In that place they had warned about but I thought would never come.

I’d tried hard to enforce my own personality on the room, and already there were piles of paper in the corner, clothes over the back of the chair, books lined up, their mismatched spines as varied as the content, and photos and pictures all over the wall. Rather than see this collection as sign of a young girl with varied interested, dabbling in them all, exploring the world and the city, and indeed the body and mind in which he found myself, but now needing a little help, I see them as failure. Debris. Like my life.

—

Yesterday had been so hard. A well rounded individual with lots of potential was what I’s school reports had said. My bosses could not praise me enough. I lived in London. My calendar was full. Mum and dad loved me. Friends tell me I am bloody brilliant. Yet for some reason I could not feed myself.

And now here I am, my life being stripped down to the essentials – essentials as defined by the hospital. As the nurse searched my bags, removing my tweezers (what, in the fear I pluck myself to death?) I tried to make conversation, but I could not help feeling judged. These people clearly thought that I was a failure, incapable.

I worried for my parents, and wanted to scream out ‘They didn’t do anything wrong. They loved me. They still love me!’

I had been on psychiatric wards before, and had a vague idea as to what to expect. I knew the vacant looks. The pacing shuffle. The anxious shiver and the potent tang of bleach. But it was all new for my parents. I could see them trembling. Dad was trying to be strong, and I loved him for it, but I knew that this was breaking him. Tears rolled down his cheeks whilst he pretended they did not.

He tried to be practical. ‘Your tap doesn’t work, we’ll get that fixed.’ The thoughts of water loading, or washing away the dregs of a meal just doesn’t cross his mind.

‘You might need to be here now.’ Mum had said as I clung tightly to her, ‘but you don’t belong here.’

—

A nurse bursts in, carrying my breakfast. As I sat eating my Weetabix, I wondered what belonging in a mental hospital looked like. Were there certain behaviours that were expected of my? Should I start crying over my cereal? Why was the nurse staring intently? I ran my fingers through my hair. I had brushed it quickly when waking, but now wasn’t sure whether it looked a mess, or was too tidy. Were crazy people meant to bother with their appearance? Not that I was bothering I thought, looking down to my dishevelled pyjamas and screwed up bed linen upon which I sat.

I hadn’t slept at all well, screaming and banging coming from the room next door. Curiosity was one of my virtues. Or vices it could sometimes be said. I wanted to know, but I was also scared to find out what was going on.

I wasn’t really sure what to do with my breakfast. I mean, what they expected me to do? Meals in the first week are very small, and the primary source of nourishment comes from milk. I wonder whether I should refuse. Throw it around. Stomp and squeal. But the truth is I am hungry. I’ve been hungry for so long. I’ve been starving for a decade. This is my chance, permission granted.

‘So what happens now?’ I ask, when the final crumbs and drops of my breakfast have been consumed. The battered plastic tray and carefully measured portions, labelled with scrawled biro on shreds of lemon yellow post it notes reminded me of my grandfather’s nursing home. I really am a patient, adult responsibilities removed. I am to be observed whilst eating, watched on the toilet, and not to leave my room without getting permission. As the days go by I find myself squirming as my bladder fills, so reluctant am I to traipse to the toilet with a nurse in tow.

‘You wait.’ Said the nurse, not smiling.

‘Wait?’

It is like I have been told to sit in my room and think about what I have done. Pure punishment.

I don’t want to wait. I want to recover, I want my life back.

 

Photo from here.

Anne Fox, Communication Trust.

Screen Shot 2014-12-02 at 12.28.59

Today, as part of our series on interviewing leaders in the third sector, we’re pleased to be interviewing the ever lovely Anne Fox from the Communication Trust. The Communication Trust is a coalition of almost 50 not-for-profit organisations that work together to  support speech, language and communication. Anne has been running the Communication Trust since 2012 and she was kind enought to make some time to answer our questions 🙂

JR: So the communication trust was created in 2007 making it quite a young organisation. It’s certainly achieved quite a lot in that time – what do you think the trust’s most important work has been so far?

AF: I think overall what the Trust has done is raised the profile of how important it is to support children’s communication, especially those who have speech, language and communication needs (SLCN).  We’ve done this in a range of ways – developing evidence, resources, running Hello – the national year of communication, running programmes to develop different models of practice and training, developing a qualification and training content for the workforce, taking up as many seats at policy tables as we could- but overall that’s been the impact- that more people are engaged with our key issues.

JR: An umbrella organisation presents it’s own challenges – do you find that you might not be as agile as the smaller organisations or do you think that you work much more as a focal point for your members?

AF: I don’t use the term umbrella organisation as personally I only use an umbrella when I need protection from the elements. Our members don’t come to us for protection they come for influence and reach.  I prefer to see us a collective – where together we bring more to people – but everyone keeps their individual identities. We’re stronger together – we add strength to one another and I get a thrill and nods of recognition when I say I represent 50 organisations- it’s an impressive number! The Trust itself is small and agile – with a core team working on projects with partners in our membership and across different sectors of society.  I think we do a pretty good job deciding when something is best done with or by our members.  Certainly our members value our influencing record and the reach we help them have, especially those organisations who are highly specialist but haven’t huge reach or resource.

JR: I’ve got a particular interest in AAC (my little brother is a user) can you reassure us that the recent rounds of company take-overs and market withdrawals amongst the traditional manufacturers are being watched closely by the Communication Trust?

AF: The Trust is here to support all children to communication to the best of their ability.  We do this in lots of ways but we work closely with our members when they hold better expertise in a specialist area.  We have in our membership a number of AAC specialist organisations and services and Communication Matters as an overall collective.  Two of the Trust’s programme board members, representing the consortium, are from organisations specialising in supporting children and young people who use AAC to talk.  So though we don’t always get involved in the detail directly at the Trust we add our voice and weight to that of our members.

JR: What do you see as the big challenges of the next few years for the Communication Trust?

AF: In a nutshell – Money, power and influence.  We have traditionally relied on statutory funding for a large proportion of our income though we’re increasingly moving into trading where we can.  There’ll be an election in May 2016 which could lead to a change of Government which could lead to changes to successes in policy terms we’ve already secured with our members through really hard work and a shift in priorities which may not give us the agenda in policy and service developments which will best serve children and young people’s communication -and we compete for attention all the time.

But we love a challenge and we won’t stop what we’re doing while we’re needed.

To AV or not to AV – that is the petition!

headshot RK

Where I grew up in rural Suffolk the bus network represented an invaluable lifeline. Without those few buses a day into town it would have been practically impossible for me to maintain a social life without being totally dependent on other people. The buses gave me a measure of independence and freedom which it’s hard for me to imagine living without. This is why I fully support Guide Dogs’ Talking Buses campaign, which aims to make buses easier to use for disabled people and many others. They have launched a new petition, which I will come to later, that I would urge everyone to sign! To make an obvious point, the importance of buses are even greater for people who don’t drive due to disabilities or age, or who are simply non-car-driving visitors to an area. Inadequate access to public transport is one of the most significant barriers to independence for younger, older or disabled people, and yet with the right technology the bus network has the potential to be a lifeline to everyone, just as it was to me. Access technology on public transport has come on a long way in the last few decades, to the point where according to the Department for Transport’s annual bus statistics (England) 2014 79% of buses outside of London now meet the minimum standards for low-floor accessibility and wheelchair space. Technology is also improving in other areas, with 89% of buses outside of London now having Automatic Vehicle Location devices for tracking them in real time, and improvements like Wi-Fi and smart-ticketing becoming increasingly common. Yet in spite of all these advances, Guide Dogs’ 2014 Destination Unknown report found that nearly two thirds of blind and partially sighted people surveyed had missed their stop at least once in the last six months. Missing a stop to people with sight can be annoying; for those without sight it can be extremely disorientating, even dangerous. The technology to tackle this problem does exist, in the form of on-board audio-visual announcement systems, yet in spite of widespread support (97% of respondents to our survey thought audio visual technology (AV) would be ‘fairly’ or ‘very’ useful) the general uptake by bus operators has been slow. Some operators have been quick to seize on smartphone technology as the future of accessible travel, suggesting that an app linked to your phone’s GPS would keep vision impaired passengers abreast of their location without “bothering” the other passengers. Clearly there’s a place for this kind of innovation, but how does this take into account the cost and difficulty for people with sight loss in owning and using smartphones? Families with at least one disabled member are significantly more likely to live below the breadline, and what of the cost of data usage, or the danger of batteries dying halfway to your destination? AV offers a level of comfort, confidence and universality that is not currently attainable through smartphone technology. It is for this reason that Guide Dogs are now launching a new petition, aimed at the nation’s ‘Big 5’ bus companies, who between them run just over two thirds of all services in England, as well as a larger number in Scotland and Wales. The ‘Big 5’ are made up of Stagecoach, Arriva, Go-Ahead, National Express and First, and while between them they run a few AV enabled services, none have yet committed to installing it on all new additions to their fleets. The petition asks the ‘Big 5’ to acknowledge the very great advantage of AV to all passengers, particularly those with vision impairments, and to ensure that all of their new buses are equipped with this vital technology. Please add your name to our petition to promote accessibility and independence for people with sight loss.