Hello!  On 18th October, Speech and Language Therapists from around England will be gathering at Westminster to highlight the invaluable work they do to enable people from infancy through to later years in life, to have a voice.  The rally is part of the Giving Voice Campaign, spearheaded by the Royal College of Speech and Language Therapy (RCSLT).

To be unable to communicate is to be denied the possibility of participating in society.  Communication allows us to access education, get a job, negotiate buying a house, to vote, and many many other things.  Speech and Language Therapists offer value for money to the Government and this is our message on 18th October.

On 13th October,  I will leave from Brimscombe, Stroud, on my bicycle, to cycle the 144 miles to Westminster.  I will be communicating for the entire trip using a lightwriter - an electronic communication aid.  I hope this will give me a valuable insight into what it might be like to be unable to participate at a 'normal' rate.  Hopefully it will be a good ice-breaker, too. Here's what it sounds like.

Many thanks to Toby Churchill for lending me the lightwriter for this trip.

I will be stopping off at Swindon, Thatcham and Slough to meet with other Speech and Language Therapists and to highlight the Giving Voice campaign along the way.

You can follow my progress over the four days on this bike blog!


Meanwhile, spread the word:

Thursday 13th October


Made it to Swindon, and now my B&B!  Set off at 9.30am and my chain came off almost immediately!  Slightly more oily, I continued, straight up out of my home valley 1.5miles up hill - the hardest climb of the whole route.


I soon began to realise that going silent isn't quite as easy as you might think.  It would be awful not to have a voice, but having one, it's actually quite hard to inhibit it.  Cyclists traditionally give a curt nod to each other, but villagers tend to give a cheery "hello" "nice day isn't it?" (well it was only spitting - not bad for October!) and it seems rude not to respond.  You can hardly put on your brakes, rootle about in your pannier, find the lightwriter, turn it on and type "yes, lovely, isn't it" - by that time the other person would have got home and cooked their dinner!!  I opted for a cheery wave and a grunt, but began to think that some kind of low tech aid for those moments might actually be the answer.


October is beautiful.  It's been so mild so far that the leaves have clung to the trees and there's that low sky you get at this time of year, and silence except for the birds - oh and the A419 in the background!!!


Managed to get off road at South Cerny for a good stretch:

Then some interesting road art!!!

and a lovely long stretch traffic free

In plenty of time ....... "spoke" too soon.  Swindon was a complete nightmare.  Sustrans route 45 VANISHED!  Oh yes, there were local cycle route signs everywhere, but they don't tell you where they lead to, do they!  In desperation I headed for the largest dual carriage way (yum!) and began looking for red A&E and H signs.  Swindon SLTs were expecting me at 1pm and I didn't want to be late for my first visit!  12.50 and not a hope in ****.  


Out of the corner of my eye I saw what looked distinctly like a fellow traveller walking along the road, map in hand, vague look on his face.  I approached eagerly and was just about to start pointing at my map and shrugging my shoulders when he spouted something that sounded rather Polish!  Unfortunately, I only sing in Polish.  I didn't think bursting into a ditty about shepherds and shepherdesses frolicking in the Tatra mountains would help either of us at that point but he was running away in the opposite direction already anyway, so that was the end of that.

Oh alright, I admit it!  I spoke!  I just caved under pressure, and asked someone to put me on the nearest road to the hospital.  I must have looked desperate as I was leaving a message for Swindon SLTs on their ansafone with the lightwriter. It just shows what pressure of time does to you.  But what would I have done if I really couldn't speak?  A sobering thought.


I did finally make it - having pushed a VERY fast 6 miles across Swindon bringing the total to 36 miles - to get to Swindon Intermediate Care Centre at 1.25 or thereabouts.


Helen Noble's team were lovely!  All there to greet meet me and take photos.  Here we are with speech bubbles.

They put on a slap up lunch which was much needed by that point.  I used the lightwriter for the whole hour and a half I was there.  Interesting experience.  One Speech Therapist remarked that she realised that she and the others were suddenly speaking more slowly and in more simple sentence constructions to me than to each other.  I had noticed this, too and it feels very odd.  It's a reminder to be aware of whether the person with the communication aid actually requires this or not.


The speed of interaction is slowed down and I often only got round to answering a question once their conversation had moved on.  As SLTs, we all know this happens, but to experience it is quite different.  I actually found that I didn't have to respond to everything with words and that a shrug, a smile or a laugh did just fine.  I also did some writing which was fine except, of course, then it had to be handed round to everyone.

They also provided me with a low tech aid - a piece of paper in a poly pocket, with "please give me time to get my communication aid out" - the obvious ideas are the best!!


Swindon are a small but lively team.  They are having their own Giving Voice event next Wednesday and it sounds like it's going to be a storm, with commissioners coming, stalls for each condition SLTs are invovled in and service users speaking.  Way to go, Swindon!!!


Thank you, Swindon team, for a wonderful welcome and good luck next week.


Much revived, I pedalled on another 4 miles or so to my B&B to a warm welcome at Brewery Farm House B&B.  I had warned them of my vow of silence as I thought it might be a bit unfair to turn up on their doorstep grinning broadly and clasping a lightwriter to my chest!!  They have been great - giving me plenty of time to respond and taking up my invitation to ask questions, and also giving me the use of this computer to keep you all updated.  They even let me take their picture!

Colin and Anne run The Brewery Farmhouse B&B (73 Swindon Road, Stratton St. Margaret, Swindon  SN3 4PU 01793 825343 if you want to stay there!).  They both took to communicating with me via the lightwriter like ducks to water.  Some people are just naturals, and Colin gave me choices of two and asked closed questions without even thinking!  Great food, nice accommodation.


Next stop, the local pub for an evening meal with my faithful companion, Leonard the Lightwriter.  I hope he's got good conversation!  


Over and out for now!

Friday 14th, October

Well, last night I set of for some grub at The Crown in Stratton St Margaret.  As usual, my heart was in my mouth at the prospect of opening conversation with the lightwriter.  I'd set up my opening gambit and had the lightwriter on ready to go.  Amazed to realise how sweaty I was.  Is this how our patients feel?


Anyway, it was fine, of course.  People are fine if you explain to them.  It might not have been so easy if it had been busy and noisy.  I had a great chat with Gareth who took himself out of his comfort zone to chat with me and ask questions.  Here he is with Clare, another person behind the bar.

 Clare and Gareth

I had a delicious meal of spinach and ricotta cannelloni and garlic bread.  I would like to have chatted more with people, but I felt shy and that I was intruding on people.  Everyone has to wait for you and it definitely sets you apart.  


In the morning I woke to realise I really didn't feel like psyching myself up to use the lightwriter.  Interesting - some have no choice.  So off I went to breakfast - and of course it was fine.  I was surprised to find how many gestures I used rather than type away.


I was very touched when Colin and Anne said they had decided to only charge me part of the price so I could donate the rest to charity.  I will probably donate to the Stroke Association who have recently set up a group in Stroud.


Colin and I had a good guffaw when as I was leaving I let out an involantary "OK"!  I wonder if that's what it feels like to have speech you can't inhibit, or to only have automatic speech left.  Let's hope I never find out!!


A gorgeous day - couldn't have asked for better cycling weather, tho' there was a pretty strong headwind.  The Romans sure knew how to get from A to B in a straight line!!

Autumn is wearing her best colours:

Coming into Thatcham as I stopped to view my map a rather dishy runner stopped to ask if I was OK.  I took a breath and fished out my low tech poly pocket.  I had a huge urge to giggle when he immediately started gesticulating at me rather than speaking!!!!  Anyway, we established that I was OK and off he went.

Let's draw a veil over the extra miles I put in at Thatcham covering the same stretch of road several times over trying to find the hospital .......


I was met by Lisa Goldsworth, Speciaiist SLT at West Berkshire Community Hospital and Fiona Cordy from their Communications team.  Lisa is part of a very small team that spreads itself super-thin while continuing to provide the very best that they can for their service users.  She had set up a great display and it was interesting to see the different ideas that SLTs come up with for communication aids.


A photographer from the local paper came and took pics so fingers crossed it will be in the paper next week.  We also both spoke on the phone to the Community Radio Station.


Lisa commented how difficult it was to communicate with me on the lightwriter, despite being a SLT.  Part of it was knowing that I could speak and she had to work hard not to try to entice speech out of me!!  She also found it difficult not to speak for me, even tho' as SLTs we all know perfectly well not to do this.  But the reality is, none of us can do it right all of the time.  We may set a good example in our clinics, but the reality of every day life is different.

Here we are having a had a lightwriter conversation (she was very jealous of my tarty up to the minute version!!!)

So thanks and hats off to Lisa for her enthusiasm for SLT and Giving Voice.


I have now landed on my long-suffering relatives and have discovered another use for the lightwriter.  My mother-in-law is incredibly deaf, and although she can't hear it, she can read it, which means I don't have to shout!  I actually prefer it!!!


You'll be pleased to know my garb is being washed, so I will be all sparkly tomorrow.  Looking forward to a good feed - g'night!

Saturday 15th October - Country Mouse hits Reading

Another gloriously sunny day and a nice leisurely one, too.  Didn't have to set off until 2pm, so I had plenty of time to lie around eating!!

Here's the start of the section from Thatcham on the Kennet & Avon Canal:

And here's a boat going through a lock!

This section of the canal got more and more busy the closer I got to Reading so the ride was punctuated by lots of bell-ringing and then mouthing thank you's and giving thumbs up signs.  I worried people thought I was rude for not saying hello or thank you and I even thought I heard someone say "Thank you" in a sarcastic manner after I had gone past, but d'y'know - I just stopped caring.  Maybe that's what happens - you simply stop worrying so much about what people think and get on with it.


I tried a wobbly one-handed video, but there seems to be a bit of trouble uploading it.  Let me know if you can see it!!

                  
Later on I came across a fisherman who had just landed a fish.  I fished out my poly pocket and presented my "please wait for me" entreaty, to which he replied "of course".  Mike - as was his name - had just landed a barbel.  No - I'd never heard of one either, but it's a beautiful fish.  Mike quickly went off along the river to put it back in and was taking so long I began to think he was staying there to avoid coming back to talk with me.  He did eventually return and was more than happy to engage in a brief conversation.  When I asked him if he had had any experience of communication difficulties he replied that he hadn't but he always had time to listen to people.  Wasn't that nice!

Here's Mike and his barbel!!

Pedal, pedal, pedal, alongside the M4 .........

And into Reading to do my usual trick of getting lost.  The signs saying west Reading and Oxford Reading Road should have rung warning bells, but it took a good 2-3 miles before they rang loud enough!!!  Back again I went, steadfastly refusing to ask anyone the way, not because of a sudden tendency towards male behaviour but because I simply couldn't be bothered to get Leonard out!!!

So .... sometime later, I turned up on the doorstep of our very own Ele Buckley!  Here she is kindly offering to cycle the final leg into London tomorrow (he he!!)

Ele has said she will be leaving at 7am so I can have a nice lie in and a lazy read of the Sunday papers .........


Good afternoon, good evening and good night!!!

Sunday 16th October
This blogger is now officially in London and offically knackered!!!  It's been a great day and Slough was fantastic - I will update you all tomorrow - the very small amount of beer I have had has finished me off!! 

Monday 17th October
Well, I'm beginning to feel vaguely human again.  Yesterday has definitely caught up with me.

So - what did happen yesterday?!  Determined not to be late for Slough, I set off at 7.30am from Twyford, to give me plenty of time to get lost.  The irony was, I got lost getting out of Twyford!!!  It was very foggy and cold and the precipitation was dripping off my helmet.  It was sometime before I realised that the visibility wasn't quite as bad as I thought and that my cycling glasses were all fogged up! 

                                                                        Foggy start

After an hour or so I was forced to admit that I was frozen and stopped in the middle of a forest to don some more clothes. There aren't many people about at that time in the morning so I was relieved of lightwriter interactions!!

Unbelievably I swung into Slough a whole half hour early!  Cause for celebration indeed.  Here I found Alison and Helen of the Paediatric Team struggling with the keys to the building, astounded to see me so early.  So was I!!

Wough, Slough!!  (They rhyme, by the way!!).  What a turn out for a Sunday morning, and the press and photographer turned up, too.  The Paediatric Team aren't so used to using lightwriters, so we had lots of interesting discussion - all electronic for me, of course.  They plied me with hot coffee and biscuits, which was just what I needed at that point.  Then it was outside for some action shots!!

 Fingers crossed there'll be a good article in their local paper.  The journalist was very interested and was scribbling away furiously.  Thank you, Slough.  You definitely went beyond the call of duty!

Then it was off again and back onto Sustrans Route 61 leading back to Route 4.  Although this was going to be my longest day (70+ miles) the pressure to arrive somewhere by a certain time was off so now it was just putting my best pedal forward and using Leonard.

A little further on I met with Mrs Ponknee.  In an exclusive interview with Leonard regarding her thoughts on the Giving Voice Campaign, she had this to say: "I think the Giving Voice Campaign is wonderful, but I'm afraid I can't say much more as I'm a little horse".  I advised her to drink more water, lay off the spirits and not to whisper.  We wish her a speedy recovery.

The grebe declined to comment and remained aloof .......

An Aloof Grebe

Ahem!

Onwards ......

Next set of victims were South Bucks CTC, who I encountered in Windsor Great Park.  I feigned to be lost (oh I'm so wiley!) and rootled around for my "please wait for me sign" while they struggled to work out why I couldn't speak.  Windsor Great Park doesn't allow Sustrans signs in it due to "Crown Restrictions" - not impressed - and I did actually take a few wrong turns later on, so this crowd would have been genuinely useful then.  As it was we had a nice chat and I managed to foist my blog address onto one poor individual who looked a bit bemused as to what to do with it!!

What a fine crowd!

Thank you, South Bucks CTC, for your time and support.  I hope it's a talking point!!

My next stop was the Shepperton Ferry where I felt an excitement out of all proportion at the prospect of a 30 second ride on a boat!!  You had to ring a bell loudly on the quarter if you wanted to cross:

This time I simply didn't feel like using Leonard so I just handed the young man the money and climbed aboard.  Then I had a pang of guilt as it seemed odd to be interacting without any noises at all, so I signalled that I couldn't speak and gave my best grin and he was fine.  I felt like a huge weight had come off my shoulders as I settled back for my brief crossing.  I didn't actually have to explain myself to everybody I met, and people didn't necessarily expect it!

I am sailing, I am sai- ai-ling ....

From this point on I simply waved and thumbs-upped at people.  It was more about physical stamina now, anyway.  The miles were clocking up, 40,50,60 ..... I couldn't have said much anyway!

At Hampton Court Palace it felt like I was at last reached the outskirts of London.

Hampton Court Palace - must come back and visit this

Wasn't this where Henry VIII stuck poor old Anne of Cleves?  Or have I got that totally wrong?

68,69,70,71,  72!  Hurray - Putney Bridge and the end of Sustrans Route 4

My instructions from there to my friend's house in Finsbury Park were dire and I just lost the will to find my way, so I found the nearest tube station and lugged my bike up and down steps and escalators to cover the last 6 -10 miles by tube.  And I don't care!!  So there!!

Not quite over yet.  Tomorrow it's the rally and meeting with my MP.  I've prepared my entreaty to him on Leonard and I hope he will be receptive.  I'll let you know how it goes!!

Tuesday 18th October - D-Day

I am sitting once again in the comfort of my own home as I write up yesterday's events.  There have been quite a few more miles cycling the last couple of days, to and fro into Westminster, back to where I've been staying and to the train station this morning.   The pace has been fast and furious and that wasn't just the cycling.

I arrived at Church House Conference Centre at Westminster at about 11.30am.  I had already decided that I was going to continue my silence throughout the day's activities until the evening.  I went to the back entrance, as I had been asked, so that I could store my bike there.  It was here that I had the most unnerving experience of my trip.  Pushing open the glass doors and wheeling my bike in, I saw a receptionist at a desk together with a man in a uniform.  The woman greeted me and I smiled in return and went to lean my bike against the wall so I could retrieve Leonard.  The man immediately raised his hand, saying "no, no, no, not against the wall", in what was a fairly unfriendly tone.  I was conscious that it wasn't ideal to bring the bike into the building;  however, that was what I had been asked to do, and I wasn't about to leave it outside in central London.

What was I to do?  I had indicated I couldn't speak but I needed my hands to get Leonard and to communicate, and my hands were tied up holding the bike!!!  I moved about an inch with the intention of taking the bike to the desk and this time the man got distinctly confrontational in his posture, moving towards me and saying in a very loud and what I experienced as patronising tone, as if I might be lacking a little, "NO, NOT AGAINST THE WALL".  At that point I felt my own annoyance rise and I leaned the bike against myself and start gesticulating wildly and making noises. 

Eventually, I managed to lean the bike against the desk (oh so very gently!), retrieve Leonard and state my case.  They were obviously expecting me as they knew my name when I gave it.  But were they expecting me not to be speaking and to be using a communciation aid?  Should we have warned them?

Herein lies the dilemma.  Of course, it would be nice if the whole world were perfect, were unendingly tolerant and understanding of every individual's needs, but the reality is, that's not how the world is; and even if we are aware of what someone requires, we are not always in a position to be able to offer it, for a whole host of reasons.

From my point of view, I would probably have come out of the situation feeling less punched in the stomach and tight in the chest, had I managed to remain calm and take just a few seconds to consider how to proceed, but then, like said angry man, I'm not perfect either.


Still, he could have done better, couldn't he!!

Throughout the rest of the day I received so many warm welcomes and sentiments of support and congratulations for my ride and silence, I was overwhelmed.  Two colleagues from my own Giving Voice team in Gloucestershire arrived:

Louise Walters and Ellie Wallis

and Mike Richards of recent DAF app fame, too:

Mike Richards
 

I later met the person Mike introduced to DAF (Delayed Auditory Feedback - sorry, non-Speechies reading this!!) and was amazed to see that he was speaking fluently without the device.  It transpires that fluency is one of the pay-offs of using the device regularly, at least for people with Parkinson's, which was certainly something I didn't know.  Mental note to self to look into this more for future reference!

At 12.30 we all gathered in the main hall for a series of talks from the RCSLT's Policy and Public Affairs Team about how the rest of the day was going to go and most importantly, things to think about when we met with our individual MPs.

There was a very rousing film of a compilation of all the press coverage and amazing events that people around the UK have done over the past year.  It really was moving to feel part of such a huge effort and I thought that surely, surely, we must have made a difference in the public eye.

Two interesting things happened - one of them very funny!  I found myself sitting next to the illustrious Professor Pam Enderby so at the beginning of the proceedings we started chatting, I using Leonard.  I felt rather scruffy in my cycling gear, with everybody else looking so smart, so I typed in: "Sorry, I'm not very smart", to which Prof. Enderby replied "Oh, no, I think you're doing very well".  She than asked me how long I had been using a lightwriter, to which I held up four fingers.  "Four years", she said.  "no", I typed, "four days".  She looked astounded, at which point I enlightened her by explaining that I could actually speak, etc etc and did not have some rare neurological condition which allowed me to cycle, phonate and laugh normally and left me with no asymmetry and normal dexterity, cognition and paralinguistic features, all of which she had, of course, noticed and wondered about.  We later had a good giggle about the "smart" side of things!

The next interesting thing happened when I went onto the stage to give a short 'speech' about my experiences with Leonard during my trip to the rally.  As you may know, the SL40 lightwriter has a wonderful feature  - notebook - which allows you to store great swathes of text to spout at people should you wish to.  I had prepared various things for the trip, explaining about the campaign, what I was doing, information for my MP for later, and also for this brief moment at the rally.  Planning is of the essence so you have to be sure about what you are going to be asked in order for your response to make sense.  This of course, doesn't allow for what can happen in real time - nerves, lack of time, even very slightly different questions being asked - which speakers can normally adjust to in a nano-second.


Deputy Chair of the RCSLT, Bryony Simpson, asked me how I had got to the rally, to which I typed a short reply, and also how it had been.  I had stored a response for this question 10 minutes previously and so played this to the auditorium.  At the end of this I hesitated and waited for the next question, which didn't come.  Perhaps the more assertive user might have keyed in "Can I say something else?", but in that moment, I understood I should sit down again.

But I haven't finished, I thought!!  I wanted to say my quote from Helen Keller!!!!  And everybody else got longer than me?  Didn't they ......?  Or did they??  Hmmmmm.  Interesting point.  I'm sure plenty of people have been cut short before and it has been nothing to do with a disability.


As it turned out, Bryony also felt that I hadn't been given much time and spontaneously apologised to me for this later, so it was nice not to be left wondering on this point.  

Leonard gives voice!

 For the record then, here is what I wanted to say, in response to the question "Was it worth it?":

"I have always believed in grass roots change.  When I was a child, I read the amazing story of Helen Keller, who was born deaf ad blind, and as a result, also could not speak.  She said 'I am only one, but still I am one.  I cannot do everything, but still I can do something,  I will not refuse to do the something I can do'.  Well, I can cycle and I am lucky enough to be able to speak. If that one combination has helped just one person to understand the importance of Speech and Language Therapy then it will have been worth it".

The next stage was for us all to bomb across Westminster Bridge for a photo with Westminster behind us and get back again in time for the first meetings with MPs at 2.30pm.

Hoooorrraaaaayyyyy!

(but boooooo - my flag ripped off!!)

Hoorrrraaaaayyy - Glos Giving Voice Team minus Becky -

sorry Becky, we missed you!!

Next on the cards was my appointment with Neil Carmichael, MP for Stroud, together with paediatric therapists Ruth Illington and Ruth Fogarty, also both from Stroud.  We had had a quick confab beforehand about what we all wanted to say.


Entering Westminster is a bit like going through airport controls - photo IDs, bags, shoes and belts into trays for the x-ray machine and walking through scanner arches.  Once inside, though, it's difficult not to be awestruck.  The main hall, I understood, is built on the original site of the 11th century royal palace, though I'm not sure how much of what we saw was original, especially as there was apparently a huge fire in 1834.


We were led here and there until we came to Central Lobby, where a green light over the doors of of the chamber announced that the MPs were praying!!!!  What for, I wondered, deliverance from the jaws of the SLTs they were about to meet?? (Or answers to the financial implosion of the Euro??)


Neil Carmichael shortly appeared and we all introduced ourselves, I on my trusty Leonard.  Ruth Illingworth explained that I was using him, and I felt perfectly at ease with this.  We sat outside on a stone balcony overlooking the Thames for our interview.  I handed over a document all about Adult SLT services in Gloucestershire including facts and figures, all the events we had done for Giving Voice, and case studies.  Thanks, Louise and Ellie for this - it was such a good idea and he looked suitably impressed!).  I used Leonard to explain my concerns about services in the new climate of GP commissioning and the kind of initiatives we have put in place to offer quality care while seeking to save money eg in-house dysphagia training, group work and Early Supported Discharge to reduce bed days in hospital.  On this last, however, I pointed out to him, that as a Stroud resident, this service does not currently exist and he may therefore have to remain in hospital longer than elsewhere in the county were he to have a stroke.


I also invited him to have a go on Leonard, to which I have to say he very game.  I certainly felt listened to by Mr Carmichael using the lightwriter, although I pointed out that by necessity I felt I was trailing in the conversation a little, and asked him to consider how this might feel for others with communication difficulties.


Mr Carmichael gave his full support to the Giving Voice Campaign and agreed that services must continue in order for all constituents, young and old to be able to give voice in all walks of life.


He then agreed to that all important photo call!

 Me, Leonard, Ruth Fogarty, Neil Carmichael

and Ruth Illingworth

There was much discussion and excitement after all our various meetings and at this point, I put Leonard to bed and found my own voice again.

What a journey it's been and what a privilege to have met so many members of the public who have, for the most part given me the time and attention I have needed to communicate using a lightwriter.  It has given me some valuable insights into what lightwriter users may feel and experience.  Importantly, I was always aware that I could opt out at any point, which others, of course, cannot.

It remains to say two things!

One, here's my groupy picture at the Giving Voice Awards dinner later that evening:

Gareth Gates, me (out of cycling gear), Prof. Pam Enderby

and many many thanks to my personal mechanic, without whom I may well have had my saddle back to front, my gears grinding and my wheels coming loose!

Dr Jonathan Marshall - mechanic extraordinaire

This blogger is officially blogged out, but it may be resurrected at some point - you never know, so watch this space.  Thanks for all your support and comments from various quarters - it's really helped me along the way.

Good-bye!

Jennie and Leonard