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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 200114

[Speech and language therapists need] persis-tence. Have to know that no matter how it don’tlook very good, got to keep going and look atways of making use of words to look at how thepeople look at words in their head, because we’veall got ways of looking at words.

It’s nearly two years since Ron Devine hadhis stroke. Like all the participants in theExpression project, he has come a long way buthopes to go much further. Three weeks into a newjob, Ron’s life - and that of his family - was turnedupside down when he took ill at the wheel of hiscar not far from his home.

Ron’s daughter persuaded him to admit to methat he hated speech and language therapy. Heremembers having to find one word and not likingit, preferring the later homework such as puzzles.I couldn’t believe I couldn’t do this. After a whileI thought, wait a minute, this has happened, soyou just have to do it. I didn’t particularly like itbut thought it would do me good. Patsy [Ron’swife] kept me going. In the beginning, you can-not tell people at all. There’s not enough speechtherapists to keep going until you’re never goingto get any better! New people come throughneeding the services.

Figure 2 (above) Ron Devine: A cup of teaRon demonstrates how quickly his wife, or other non-aphasic people can say “Let’s have a cup of tea.”

Figure 4 Limits on participation

Figure 3 Len Agley - Limits on activity

Figure 6 Len Agley: New Discoveries

Figure 5 Len Agley - untitled view of reading

Imprints of themind

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Early in 2001, six service users with aphasia, two speech and lan-guage therapists, an artist and an illustrator teamed up to work onan expressive arts project. The results have gone way beyond whatthey envisaged and have the potential to benefit a far wider groupof people. Here, Avril Nicoll meets four of the participants in‘Expression’ to hear their unique and often surprising stories aboutlife, change, services, aphasia - and speech and language therapy.

As a charge nurse with thefrail elderly, Ron was acutelyaware that standards of nurs-ing care fell way below whathe would have expected. Heremembers being handed arazor and being told to shave. As he was notgiven a mirror, normally used an electric shaverand had just had a stroke, the result was pre-dictably bloody. Ron also felt the humiliation ofnot being able to express something as basic asneeding the toilet, even if someone happened tobe around at the time he needed.... went to go out of my bed ...and I forgot my -my legs werenae working [laughs]. The reasonwas ‘cos they hadn’t given me a bottle and I’dnever seen anybody and when you canna - cannatalk so you canna tell them - if you see somebodygoing zh-zh-zh-zh [gestures and sounds peoplebuzzing about all over the place], they canna stop- they’ve got to be able to see you before you cansay “I need you” - I needed the toilet, and I justhad to go out to try and get it - and I didn’t!

Ron is pleased to learn that Ninewells Hospitalin Dundee is at long last to get a specialist strokeunit. He contrasted his experience in Ninewells,

and the experience of other peoplehe knows, with the Centre for BrainInjury Rehabilitation at Royal VictoriaHospital, although he didn’t at thetime agree with their assessmentthat he had ‘potential’. Reflecting

on how his experience makes him view what hap-pened when he was on the other side of the fenceas a charge nurse, Ron is very positive.Actually, I think I thought I had been - because ofwhat’s happened - that what I was doing now -oh, the wrong way - that I had been nursing themin the way that I would wanted to be. But youhave to have enough nurses to do it - and theydidnae have it at Ninewells. Even when you did -phew - it was “hello” and “cheerio”. They didn’tknow how to stop and listen what you need.

In contrast, the rehabilitation centre had anindividualised programme and activities wereorganised for the whole day. At that time in awheelchair, Ron resented being so dependent onother people for his mobility and found this had ahuge limiting effect on his communication andability to make decisions. He still finds it difficultto believe that he could have made so muchrecovery in his movement and talking given the

Figure 7 Helen Gowland: Dying to Whoosh

Figure 8 Madeleine Nedelec-Lamb: Heaven and Earth

extent of his initial difficulties. Ron suffers a great deal of pain and continues to

find the reversal of roles with his wife hard tobear. He works hard on his computer; figure 1shows part of two descriptions, done a fewmonths apart, of how his stroke occurred.Interestingly, Ron explains his aphasia using acomputer analogy:I look at my —— screen, the screen that I get - andI use this for everything but some people don’thave one. Some people think it’s in their chest andthey feel their words are stopped.

Figure 1 Ron - ‘A Stroke Happens’ - January 2001I held taken to car and always I saw some-where can to push to can path and him told Igoing the ambulance and I going person stillme seating and but I forget some.- April 2001I found myself getting out of the car, unableto do anything but stand there. Someonecame down the path of a house and called tome, asked if I needed help and he helped topushed me against the car before I fell down.

if you want to• work collaboratively • know what users really

think• help people express

themselves

Read this

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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 200116

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Ron talks slowly but fluently, focusing carefullyon the point he wants to make and using humourto help him deal with highly personal and emo-tional issues. His illustrations in the Expressionproject reflect his feeling of being present amonga group of people but not being part of the com-munication, and his recognition that the greatestdifference between his communication now andbefore his stroke is timing (figure 2).

Collaborative ventureExpression is a unique collaborative venturebetween a group of service users with aphasia,speech and language therapists, an artist, and anillustrator. The use of art as a communicationmedium following aphasia is growing (see, forexample, Sacchet et al, 1999) but the aims of thisproject were far wider. Over five Saturday sessionsof printmaking at an art college, each lasting 5hours, the group constructed new representationsof aphasia in order to:1.make aphasia visible and more understandable2. increase awareness of what it means to

have aphasia3.show wide-ranging competencies of people

who have aphasia4.address different aspects of identity (for

example; personal, social and collective.)Taxis and lunch were provided and visual

reminders were posted and telephone calls madebetween sessions. Visual and written summariesof the workshops were also made to facilitatecommunication about the sessions with familyand friends.

Ron had previous knowledge in that he had atone stage been a printer, but Len Agley’sexperience of art was confined to his schoollessons. Although he found them enjoyable, hesays he was very bad! Len admits to having had asense of fear about the proposed group but, hav-ing discussed it with his wife, felt he would try itand, if he didn’t like it, he just wouldn’t go again.However, he immediately loved it, built up astrong bond with the rest of the team, and saysthey would all go to Expression anytime. Len ges-tures expansively as he describes the feeling ofinclusion which came from participating. Same people altogether - similar but different,like being pals. The people helping too wereawfully good. That first year I wouldn’t have gonebecause at that time I was thinking I would still bealright - doing a lot to try to help myself. Theworst thing was coming to, “you’re not going tobe the way you want” - you’ve got to change yourhead’s way. Even now, it’s hard.

Len, who exudes a quiet strength, covered alarge area of North East Scotland as a service engi-neer with Comet. He took ill when he was at acustomer’s house and seems to have been a victimof a catalogue of health service failures. His fami-ly feels very let down by the system and his wifepoints out that, even now, as aphasia is a ‘hidden’disability it is not afforded the same respect asother more visible ones. Len would like the

Symboldevised tosay ‘Don’tspeak sofast’

Figure 9 Illustrations by Christine Farrell

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opportunity to tell his story to someone in author-ity, and for them to listen and learn from it, sothat it never happens to anyone else.

It took a long time for Len to accept that he wasnot going to be able to do all the things he didbefore. This was a lonely timefor his family who had takenthat fact on board much morequickly. It’s hard because, before that, Ithought I would do anything Iwanted to do. Squash, running,bike - I can do it now, but I’mnumb up my right side.

Speech and language therapylasted two years. Len believeshe could have gone furtherwith it but, in common with theother participants interviewed,is philosophical about it, recog-nising that services are underpressure.

Part of the Expression project involved the par-ticipants keeping a sketchbook where they visuallyrecorded things of importance to them.Suggestions for what they might collect includedmagazine cuttings, postcards, photos, words,colours and images as well as sketches, doodlesand collages of their own. The World HealthOrganisation principles of impairment, activity,participation and well-being provided a structure,but had to be made meaningful.

Looking first at impairment, Len was asked:What doesn’t work? What it feels like? What feelswrong? Why won’t it work? Where does it feelwrong? Adding red to a figure of a man, hecoloured the right side and around his head.Around a postcard of someone holding their headwith a cloud-like question mark, lightning andrain above it, and the question ‘what’s it allabout?’, Len explainsI know what I want to say but it comes out allwrong!Why does my head hurt?Why do I not feel my right arm or leg?

Limits on activity, on what Len can do, are in figure3. Figure 4 shows his response to the participationquestion; the restrictions on his life, involvement,engagement and attainment. Trying to communicatewithin a group causes confusion and alarm, asdoes being one half of a phone conversation.Len’s humour comes through in pictures of hisfaces associated with his football team DundeeUnited - upset, depression and frustration! Theserious side to this is addressed by a picture of hisface in a box set apart from this, showing isola-tion. Len goes to the games and is part of thecrowd - but not a participant in the same way hewas before.

Feelings are explored under the banner of well-being, with Len’s a mixture of the negative (helpless,inadequate, frustration, emotional) and positive(more relaxed, more time, accept illness, gratefulfor help.) Reading and writing are skills he misses

greatly, as shown by the print in figure 5.Len’s print New Discoveries is also a mass of

allegory which very much reflects how Len felt atthat time. The ship Discovery (berthed in his hometown of Dundee) is pictured along with the

Discovery space shuttle. As Lenexplains, They didn’t know what was gonnahappen with them. And sameas...That’s where I was before. Andthat eh that changed now what I wasthinking. You were going up. And eh,going up.

If you look closely at figure 6, youwill also see a lump on the head of theperson with the sad face to signify thebrain injury. Chris Kelly, artist on theExpression team, comments that NewDiscoveries may have a certain naivetéin execution, but the quality of thefinal print is such that it becomes asophisticated piece of storytelling.

Ready to reflectChris explains how the sketchbook and the WorldHealth Organisation model provided a structureand context for personal reflection by a group ofpeople who were ready to reflect. Getting thingsout into the open stopped the aphasia from beingsuch a personal burden. Dealing with any exampleof aphasia in a very public way meant that theycould be discussed by the group and worked upinto visual representations by the students andillustrator Christine Farrell.

Having expected to find most of the partici-pants’ experience of aphasia revolving around thehead and the spoken word, the facilitators weresurprised to discover aphasia was actually experi-enced far more holistically. In the firstsession, one of the speech and languagetherapists presented a narrative of apha-sia, that “it’s like coming into a filingcabinet and finding that a group ofthieves has played mischief and createddisorder.” But as an example it was irrel-evant, as they didn’t identify with it - theparticipants were more involved withimages of being outside of the conversa-tion, whether due to mobility problemsor sitting amongst a group of peoplewho were not aphasic. Helen Gowland’s experience of

aphasia is not in her head at all.Enthusiasm for life, hobbies, family, friends andwork bubbles over as Helen explains where thefeeling of whoosh! comes from (see figure 7,Dying to Whoosh.)I said, it’s right in here [points to heart] but youjust cannot...get it in here [motions up to mouth].I know EXACTLY what I want to say. Well, it’smuch, much better now - because, if you saysomething to me, or I want to say something,you’ll say it and I’ll know what I meant to say. ButI know it’s there [in me], but it’s in here [points to

heart], and this is why I not in here [points tohead], this is why I’m not mad this is why I’m say-ing it’s in my heart, because it’s just here [pointsto heart] or.. just wait a wee minute..[walks fin-gers towards heart] it can be in there [other areaof chest] or there [other area of chest].

Helen is adept at using a variety of methods - writ-ing the first few letters of words, asking for a modelof a word, finding key words in her book, asking fortime - to help with communication. Her aphasia isthe result of a brain haemorrhage and operationtwo-and-a-half years ago.I was a physiotherapist and I absolutely LOVEDbeing a physiotherapist - just fabulous. Like you doas well [being a speech and language therapist].And I got three girls, and a husband. And every-body’s fantastic. And all of a sudden - I was sittingat telly about 9 o’clock and I was watching TV - Joo-Jools Holland - and I love him - and that’s the lastthing I know, I can remember.

Not allowed to enter rehabilitation until amonth later, Helen remembers a pretty awfultime. She hated sitting about in her night clothes,and cried to get home, but her daughters had tokeep telling her she couldn’t. Gradually Helen wasable to go home for three day weekends whenshe enjoyed having a good laugh with her friends.This continues with get-togethers for coffee and agroup of women meeting up every month for acurry at somebody’s house. When I asked whetherher friends had known anything about aphasia,she said no and added,In fact, neither do physios either. Because it’s com-pletely different because physios are all about thisbit [points to body] and that’s been hard for phys-ios to think about what’s happened.

Helen now takes a popular exercise session oncea week at a club for the elderly, cooks and sews,

and has new hobbies of belly dancingand Tai Chi. She has recently startedcounselling as she describes her speechand language therapist as ‘wonderful’but explains that, afterwards, you ask‘what else? what about ME?’ Helenbelieves there is insufficient speechand language therapy which means itcannot continue for as long as peoplewould benefit from it. She is nowactive in the local Speakability groupwhich is planning to take its campaignfor more therapists to the ScottishParliament. In common with Ron,Helen didn’t much care for ‘what’s

that?’ naming tasks, but saysI love, “Today we’re going to Edinburgh with mydaughter to get a _____” - MUCH better.

Two of Helen’s daughters are at university, oneat St Andrews, the other at Oxford. Helen is frus-trated that these place names are particularly elu-sive and, although she is rather concerned thatother people might get impatient, is persistent ingetting them ‘from here to here’ through visuali-sation so she can ‘whoosh’. Helen makes use of allher senses to make up for things she cannot enjoy

If you get theopportunityto see theExpressionexhibition,do go.

people get hugeenjoyment frombeing creative.Some naturallygravitate towardscomputers, paintsor pastels, andcolour or humour

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her weight in gold’ and tells how John gave up hiscareer to look after her. Happiness a lot easier to find since. I feel gratefulthat I am almost chosen to be here and at least talk-ing, not in the manner that I would like - I wouldlove more expressions to be able to... but, yeah. Myday isn’t long enough. I used to be often boredbefore, I was always keeping myself busy - proba-bly too energetic, or too hyper. I think I just appre-ciate being. It’s hard - it takes me so long just to dolittle things - it’s taken me so long to do little thingswhereas before you would do them in a second.

Madeleine describes the relief of being inrespite care where she doesn’t have to do whatseems like one task to us but means ten to her. I didn’t have to buy the food, I didn’t have to pre-pare the food, cook the food, I didn’t have to setthe table, serve it, didn’t have to - em - take theplates away, I didn’t have to wash up.

Madeleine’s print (Heaven and Earth, figure 8)describes her struggle but says ‘nice things’ to her- her dad who died when he was 42 is up there, asis her brother John who died at 50. Madeleineherself ‘nearly made it’ when she was 50.Madeleine found it difficult to conceptualise herpicture, and to understand what she was meantto be doing until it was actually finished.

Speech and language therapy is something elseMadeleine says she didn’t understand until it wasfinished. She would like to do more but withsomething she is interested in and which inspiresher rather than ‘words for words’ sake’.Madeleine’s father was with the Free French andshe remembers the language being spokenaround the table with onions and mustard, crustybread and good cheese long before these becametrendy. She would love to re-learn French, but isfinding she needs more help than the tapes andbooks she has offer her and is further hamperedby the physical challenge of turning pages.

Madeleine has ongoing problems with reliabilityof transport which severely restricts her indepen-dence and ability to take part in groups. She isparticipating in the local Speakability group but,in addition to transport issues, finds the level ofpaperwork a problem. For so many daily livingtasks she feels she needs just a little extra help.She hopes to get a computer again in the futureso she can make use of facilities such as e-mailwhich is far easier for her than writing and fold-ing a letter, putting it in an envelope, sticking astamp on it and posting it.

Madeleine sets high standards for herself. Shelikes to have notes to compensate for the memorydifficulties she finds so debilitating and frustratingto read, and to use several different words todescribe the richness of her experience. She under-stands why people say ‘och, I forget things too’ butis eloquent in explaining what she really needs.Often I don’t talk because...FAR too fast - notclear enough or slow enough. I need wordsrepeated. If I was in a discussion NOW, I wouldlove to express myself better - would love to do itthe way I did before. [I need] one-to-one, very

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SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 200118

• Do I know how the therapy I offer makes people feel?

• Do I appreciate that a communication difficulty is feltmore holistically by clients?

• Do I prioritise people for therapyat the right time for them?

Reflections

as much as before; for example, by smelling booksshe cannot read. She can manage recipes butimportant tools such as shopping lists are anongoing problem. Although her spoken words arefirmly in and around her heart, Helen doesn’thave a strong sense of where written words are -she just doesn’t know.

Helen had tried a Chest Heart and Stroke groupbut she didn’t like the noise and found the volun-teers overbearing. In contrast, she describesExpression asAbsolutely fantastic, the most wonderful thingI’ve done. Start with something small - shape,colour, a little bit more, realise oh! I can do a bitmore than that.

The grading of the printmaking skills from basicto more complex was overseen by ChristineFarrell. Her previous experience, including a resi-dency working with women and children at theTransport Museum in Glasgow, has shown thatpeople get huge enjoyment from being creative.Some naturally gravitate towards computers,paints or pastels, and colour or humour, depend-ing on their age, individual preferences andmood.

Excitement of the momentMonoprints were done by drawing on paper thatwas on top of glass covered in ink. When thepaper was pulled back, the image was in reverse.In contrast, lino cut is a block print with inkapplied to a surface that has been cut. The designand print workshop at the art college has old,cast-iron presses and a history and smell associat-ed with it which increase the excitement of themoment when the finished article is revealed.

The physical element of the process - the balancerequired to pull the press, the fine control to cutthe lino - was enjoyed by all participants.Madeleine Nedelec-Lamb is unable touse her right arm following her stroke but is par-ticularly persistent. A facilitator held the lino andturned it every time to ensure she made the cutsaway from herself, using the weight of their handto prevent the lino from slipping. Madeleinedescribes Expression as Probably the best help I’ve ever experienced inthat field. Well, for a start, I didn’t know what Iwas doing. I still didn’t know what I was doing.The others knew what they were doing butweren’t able to express things clearly, but I didn’tknow why I was there, what I doing - I knew Iwanted to do it because they were nice to you -they had time - you were not a burden - it’s likeyou were a normal person, you weren’t a burden.

Of the four participants interviewed, Madeleinehas the most spiritual approach to a life which hasnot been easy. She has persistent pain from arthri-tis and headaches but has learnt peace andpatience, and found her determination not togive up comes from being a mum to her sons,James Paul and John Michael. She is very gratefulfor all the support she has from her family. Forexample, she describes her own mum as ‘worth

clear, slow, not in a hurry, not getting job doneand on you go. ‘Cos everybody is in a hurry and -eh - it’s far easier for me if things are slower.

PowerThe Expression project has enabled all these par-ticipants to communicate their experience ofaphasia. At every stage, facilitators were enthus-ing, encouraging, observing, discussing and tak-ing notes. By turning the power over to the par-ticipants to create something unique reflectingtheir personal experience (examples in figure 9),the possibilities are infinite. Over the next fewyears, Christine Farrell plans to extend this workwith other people with aphasia so that it will ben-efit a wider audience. She envisages a package ofillustrations being produced to be used by speechand language therapists with people with aphasiaand their families at different stages of theprocess of coming to terms with it.

If you get the opportunity to see the Expressionexhibition, do go. The enthusiasm, inclusion, con-fidence and humour associated with it is there forall to see, and the bond between the facilitatorsand participants mutual.

As Madeleine says,I couldn’t believe how nice they were. They saidwe had benefited them - wow! It made you feelso - you’re not a number, it’s like you’re a personagain - and they had the time for you.

ReferencesSacchet, C., Byng, S., Marshall, J. & Pound, C.(1999) Drawing together: An evaluation of a ther-apy programme for severe aphasia. InternationalJournal of Language and CommunicationDisorders 34 (3).

AcknowledgementAvril Nicoll would like to thank Christine Farrell,illustrator, Chris Kelly, artist and Laorag Hunterand Lynsey Paterson, speech and language thera-pists for their assistance in gathering informationfor this article. Special thanks go to Len Agley,Ron Devine, Helen Gowland and MadeleineNedelec-Lamb, Expression participants, for shar-ing their very personal experiences so that otherswith aphasia may benefit - it was a privilege tomeet you all.

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