living with communication impairment

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LIVING WITH COMMUNICATION

IMPAIRMENT

A study commissioned by the Communications Forum

Executive Summary

This qualitative study, "Living with Communication Impairment" was commissioned by

the Communications Forum and researched by a team from the Department of Clinical

Communications Studies, City University, London.

The sample consisted of 18-70 year old men and women with a wide range of different

types and severity of communication impairment (including dysphasia, dyslexia,

stammering, autism, laryngectomy and profound hearing and visual impairment). Their experiences are eloquently expressed in their own words.

The Study found that people with very different communication impairment face

common barriers in:-

education - where they are often rejected or stigmatised by teachers because

they cannot perform conventionally and may be bullied by fellow

students.

employment - where they have difficulty in getting interviews and ininterviewing successfully.

- where they have problems getting the support and special aids

and equipment needed to work effectively.

everyday life - where lack of understanding and the stigma of communication

impairment damages relationships.

financial matters - where access to and advice on benefits are made extremely

difficult because those responsible lack knowledge or sensitivity.

- where earning power is lowered or removed as a result of the

communication impairment.

An Agenda for Change will be based on these findings. The Communications Forum

will campaign for:

greater understanding of communication impairment.

better training for health, education and social care professionals.

working partnerships between the professionals, people with communication




impairment and their families.

easily accessible advice, information and support.

recognition that people with communication impairment are disabled people.

consequent changes in legislation and effective enforcement of the Disability

Discrimination Act.




Contents

Foreword 4

Background 5

The consequences of communication impairment

Education and employment 6

School 6

Finding work 7

Experiences in work 7

Personal finances 8

Negotiating financial support 9

The impact of communication impairment upon relationships

Dependence, independence & social relationships 1 0

Like minds - joining with others 11

Communication impairments and the obstacles faced

in everyday life

Environmental barriers 13

Aids and appliances 13

The language environment 13

Structural barriers 14

Informational barriers 14 Attitudinal barriers 15

The question of disability 15

Vulnerability 16

Stigma 16

Strategies for coping and the issues that need to be addressed 18

An agenda for change 19

AppendicesMethodology 19

Terminology 28

Communications Forum contact details 29




Foreword

To have a communication impairment changes the ability to interact with others. People

with these impairments may look ordinary and may have no obvious disabling features

until they try to communicate. The disability is hidden.

We know very little about the needs and experiences that are common to people with

different types of communication impairment. What effect does impairment have on all

their lives? What are the difficulties they face and have they found ways of coping with

them?

This study, the first of its kind, was commissioned by the Communications Forum, in

an attempt to find an answer to these and other related questions so as to provide an

informed basis for its future work. It will be used in helping to develop strategies for

raising awareness, campaigning for equal access and opportunities, informing service providers and working with others to achieve positive developments for people with


The team from the Department of Clinical Communication Studies at City University,

London, carried out this unique, ground-breaking study, finding that despite widely

differing impairments, those who took part spoke in markedly similar terms and faced

many common problems. This survey concentrates on giving their experiences in their

own words and suggests some strategies for change.

We would like to thank Susie Parr, Sally Byng, Celia Woolf and Susie Summers for their sensitivity and skill in carrying out the survey. We are also grateful to the Hospital

Savings Association and those member organisations who supported us financially and

to members who helped to identify interviewees.

Above all, we would like to thank the people who took part and who talked so frankly

about their lives, hopes and expectations. We can now move forward using this

information in our work to bring about the change which their responses to the study so

graphically illustrate is needed.




Background

A broad cross-section of people with different types and severity of communication

impairment, were interviewed by researchers from the Department of Clinical

Communication Studies, City University. Through in-depth interviews, they succeeded

in capturing people's 'inside stories' - their personal experiences, evaluations and

concerns.*

The sample of respondents1

included approximately equal numbers of males and

females, with similar numbers in the three age bands 18-35 / 36-50 / 51-70. The sample

included a wide spread of types of impairment - dyslexia, aphasia, profound hearing

and visual impairment, dysfluency, learning difficulty, autism, laryngectomy, head

injury, cognitive problems and acquired dysarthria.2

Those interviewed represent a wide range of human experience. Because the nature and

severity of the impairment varies, generalisation is frequently unfounded and

inappropriate. However, in spite of the marked differences, the commonalities are

striking. Themes and issues which are explicitly discussed by some respondents are

embedded in the accounts of those who find it difficult to abstract and reflect. Even

taking into account the diversity of each person's background, impairment type and

experience, there is a sense in which the accounts resonate with each other.

This study selects and details the common themes. The first section looks at some of the

main consequences of communication impairment and its impact on work, education,

finances, personal relationships and identity. The second considers the barriers and

obstacles encountered by people in their everyday lives And finally, there is a summary

of findings including the various coping strategies adopted and suggestions for change.

Although many of the respondents found it difficult to express consistently coherent

views, they spoke with great candour and their detailed accounts and reflections offer a

unique insight into living with communication impairment and highlight the challenge

faced by the voluntary and statutory sector in addressing these issues.

* Throughout this abridged version the respondents' impairments are given in order to

show the commonality of experience despite the differing types of impairment.

1See appendix 1, Methodology




2See Appendix 2, Terminology




The consequences of communication impairment

This section highlights the ways in which communication impairments impact on almost

every aspect of the individual's life from school and college to work, leisure and

finances. It also illustrates the consequences of poor self-image and low self-esteem and

the strain that is frequently placed on personal relationships. This does not suggest that

the outlook is entirely negative. A proportion of those interviewed have succeeded in

adopting very successful strategies for coping with the world around them and live

fulfilled and productive lives despite their difficulties.

Education and employment

Those who took part in the study tended to fall into three main groups: a small number

in work, some hoping to find employment and some unable to do so as a result of their

impairment. Nevertheless, a common feature is the desire to work and make somecontribution to society.

I felt I wanted to do something - to put something back.

Jenny, 61, Laryngectomy

I would like to be at work. That's the main thing, to work. I hated to stop.

Fred, 61, Aphasia

It's just a joy to go to work. Meet new people. See what the country's going to be like.

Not staying in all the time.Sarah, 26, Learning Difficulties

School

Many of those interviewed felt their communications impairment contributed

significantly to difficulties experienced throughout their lives. For those with long

established impairments, the experience of failure often started at school with feelings of

introversion, isolation and ineptitude.

All I remember was them pointing... pointing at the words and me not knowing what they were and having my hair pulled - crying and having someone pulling your hair - I

felt like a door closed in my head. When I went to secondary school we were written off

straight away.

John, 47, Dyslexia

I had difficulty concentrating on a book from cover to cover - Not many people knew

about aphasic.. it sort of put in the lazy, lazy incapable side. - If I didn't have my

disability, I'd have been able to go to university.

Keith, 29, Developmental Aphasia

I couldn't spell - I just hated it. I knew I was failing before I started it.




Anna, 46, Dyslexia

Finding work

I want to do something useful - Total rejection

Jenny, 61, Laryngectom

Many mentioned their problems in finding suitable work. For some, like Jenny, the

response is one of alienation and anger. John, 47, (dyslexia) is, on the other hand,

determinedly struggling to gain a fine arts degree in a system that neither recognises nor

understands the nature of impairments or the needs that accompany them - 'I had

nothing to say I was good at anything.. I'm going to have difficulty all the way through' .

Others take a pragmatic approach to finding work that will not expose their impairments

and, thus, limit the scope of their aspirations. Ralph, 55 (dysfluency) has been in the

same job since he left school. Although his role has developed, his lack of confidence

has stood in the way of him accepting promotion and continues to obstruct him now.

Even though I have a more responsible position now of course but at 55 it's too late to

careers ... change direction. - To find a job would be impossible for me now, I think.

Ralph, 55, Dysfluency

Those who are not working, but hope to do so, are able to reflect on the likely impact of

their impairment, making the future uncertain. Cath, 45, who prior to her stroke,

worked as a hotel manager, focuses on her changed abilities and current age.

Work, no. I don't know I'm shy now. I think change... um shop or something or add.

Now, number I've got everything. Middle age too.

Cath, 45, Aphasia

People with cognitive impairment or learning difficulties may find it hard to understand

the options available to them. Some, when speaking of their ambitions for the future,

exhibited a level of confusion. Though optimistic, Hailey's account betrays her

uncertainty.

I want to help. Like... a porter I want to be a porter I want to bea porter woman. - If there's a lot of people who have a problem.

They could come and tell me and I phone... well no I wouldn't phone

They'd explain things to me.. Oh and to become a nurse as well,

only you 'd need a lot more training. - When I go to work I will be

a nurse..

Hailey, 19, Profound hearing & visual impairment, memory / cognitive difficulty.

Experiences in work

Of those working, some have managed to find employment suited to their needs andabilities. This, however, has often proved a long and arduous process.




Vivien, who found her perfectionism a barrier to working with others as a florist, now

works during the summer producing bar labels for a school clothing company -

something she 'doesn't mind because it is pretty autistic friendly work... sort of plod,

plod, plod'. The seasonal nature of the job allows her to pursue her hobbies, most

notably her passion for skating. Recently, Vivien has begun a small enterprise called

Logical Illogical giving talks on the experience of having autism. She loves the work as

it allows her to travel and is interesting. It has also elicited some very positive feedback.

Only recently, she found herself in a group 'laughing over autism' . She was told 'We

have had so much fun with it - usually these meetings are such gloom and doom'.

Vivien, 21, Autism

Tom, who felt that his ambition to go to art school was 'too far fetched' trained and

worked as a plumber - a job he 'never really liked'. Encouraged by a girlfriend, he took a

course in photography and eventually landed a job in a media company. Computer

technology, notably grammar and spell checks, along with the committed support of his

colleagues, enables him to bypass his dyslexia. Pleased with the turn his life has taken,

Tom informs us 'If I was 31 and hadn't been to art college and hadn't started

photography maybe I might be bitter and twisted'.

Tom, 31, Dyslexia

Following his injury, Jack found his work as a proof reader no longer suited him. He

wanted employment that was interesting and allowed him to contribute. He did not want

'to stack shelves in a supermarket' . His failure to receive the necessary support and his

inability to access counselling finally led him to train as a counsellor. He was allowed to

do this at his own pace with 'plenty of time to pore over books' . Feeling empathy with

their ' suffering '. Jack now works with people with communication impairments.

Jack, 42, Head Injury

Personal finances

For many of those interviewed, communication impairment makes the system hard to

negotiate. Needless to say, this has many far-reaching effects on everyday life. In

several cases, work and finance are seriously affected.

Loss of employment and difficulty finding work can mean that a person withcommunication impairment becomes financially compromised, and in some cases,

'really, really poor'.

Glasses, mortgage, everything. Teeth everything enormous money - Banks or

everything... money, money, money... short, short ,short. To be warm, yeah. But money

is short. - Bread and margarine.

Cath, 45, Aphasia

I was earning good money Then nothing at all coming in. I was terribly worried. I

needed money.Fred, 61, Aphasia




Negotiating financial support

Communication impairment can make it difficult for the individual to understand what

support is available. For those whose writing ability is impaired, the administration of

benefits is particularly difficult to negotiate.

Following his stroke, Fred and his wife struggled to get any information about financial

help. Fred's compromised language abilities added to their difficulties.

There was nil at that time Nil. I had to... I had to find out everything I had to do find

yourself. Everything, but no-one. There was no-one There just to go to. - I could go to

DSS and ask them. They say 'Don't know. Don't know. Don't know.

Fred, 61, Aphasia

At the time, Fred found it incredibly difficult to fight back, partly because he believed

that no help was available. Twenty years after his stroke, Fred is horrified to find people

in the early stages of aphasia experiencing the same struggles.

...even now, There's nobody.. nobody.. no one to tell the people at our club what they're

entitled to, regarding their money.

Fred, 61, Aphasia

John found that his dyslexia was a profound barrier to dealing with bureaucracy. As a

student, living with his wife and first child, he was unable to make a successful claim

for financial support with consequences that were disastrous both financially andemotionally.

We were living together and I used up all my grant supporting us and then we went to

a tribunal and they wouldn't give me any extra money for supporting my family - so

then we had to split up and she had to go on Social Security and I had to live with my

brother.

John, 47, Dyslexia

Later, John confronted the trials of signing on. Negotiating the system caused him

feelings of anxiety, dependence and vulnerability.

I would worry myself to death every time I had to sign on because I know I didn't want

to do a rotten job.

John, 47, Dyslexia




The impact of communication impairment on relationships- Dependence, independence and social relationships

When John, 47 (Dyslexia), explains that his wife Jane 'handled the world for me' , he

is describing what seems to be a common experience amongst people withcommunication impairments. Essentially, many feel they come to rely on the support of

others. Although this can be provided by statutory services, by social workers and paid

advocates, this is usually only the case when the impairment is very visible or severe.

Those with less obvious impairments may struggle to cope within more informal

support networks made up of family and friends. This can sometimes have very

stressful consequences.

It hurt my wife, the whole accident. We were only married a year and it really put a lot

of emphasis, a lot of strain. She had to take over everything because I couldn't

communicate. It's only when you can't communicate you realise how important it is. So she had to take it over.. You want to say to your wife because she is feeling really

vulnerable, you want to say to her how much you love her -I find it more satisfying

doing it rather than passing it over to someone else and I had a lot of that when I was

recovering. People would take over my life, so it was quite hard to get your life back.


Jack's account highlights the delicate process of re-establishing independence within a

loving relationship along with the vulnerability and powerlessness of those who have

difficulty communicating. His struggle to restore the balance of his relationship and

reassert some control is echoed in other accounts of those with acquired impairments.However, attitudes do vary with some actively seeking independence. Susan, 33,

(Head Injury) wants to be on her own and attempts to control the support that she

uses. Others are not driven to be independent which can cause serious anxiety for all

concerned.

For many years, I had John and my mummy and in a minute a man. She doesn't like

that. She's sending me. Mother said like why.. that they're exactly the same.

Dewi, 34, Learning Difficulties

The short and fragmented account that Dewi gives of leaving home to live in a hostel powerfully conveys the sense that he had little say in this decision. Although many

people with communication impairments do have loving relationships with friends,

many experience a loss of control and feelings of social exclusion. For someone like

Fran, 24 (Learning Difficulties), separation from those she loves seems inevitable.

Since the death of her father, she lives apart from her family - 'Mummy and Martin.

Daddy no more. Daddy die'. Fran now rarely sees her clearly remembered schoolday

friends and can only see her boyfriend once a week.

In addition to the difficulties expressed by Fran, many people feel urged to detach

themselves. Generally, this is a response to stress and what they perceive to be a limitedunderstanding of their impairment. Keith is a case in point:




They don't actually understand what's wrong. - I find it's harder to make friends. I find

it much harder to open up to people.

Keith, 29, Developmental Aphasia

This is echoed in other accounts. Communication is the currency of relationships.

Without it, friendships can become vulnerable or simply fail to develop at all.

They'd lean over: 'Alright?' I'd say 'I'm not silly'. Looked at me as if I'd not only had a

stroke, I was a little bit mentally ill as well.

Madge, 62, Acquired Dysarthria

I don't really have any specific friends

Ben, 47, Autism

Family and friends shut up, really. - Can't write to friends.

Cath, 45, Dysarthria

It is clear from the accounts given, that people with communication impairment

generally struggle to develop and maintain their personal identity. For those with

acquired impairment, adjusting and restructuring can be complicated by expectations

and hopes of recovery. Several years after her stroke, Madge reflects on how her life

has changed;

I had such a life before. I had a man friend and I had my girlfriends. I had my mum. I

used to go away at weekends.

Madge, 62 Acquired Dysarthria

Some do, however, reconcile their former and present selves:

I know that inside I'm the same person I was before I fell - I would never go back to the

way I was.


Like minds - joining with others

Exclusion, marginalisation and fear are illustrated as common consequences of

communication impairment. For many, coming together with people who have similar

difficulties can be a liberating experience. In some cases, such encounters quite literally

change their lives in ways that practical therapy has failed. For Ralph, 55

(Dysfluency), meeting with other dysfluent people, although initially traumatic, proved

to be a major breakthrough.

There was a terrific camaraderie - It was an actual lifeline to me. I think that if I'd not

had that practically at the start I might have improved in speech, but certainly not inany sort of self-esteem or confidence.




Ralph, 55, Dysfluency

Since joining the group, Ralph has gone from strength to strength. He now belongs to

a voluntary organisation set up to assist stammerers, attends conferences, writes, gives

talks and, for the first time in his life, is travelling abroad.

Frequently, meeting others facing similar impairments serves, not only to boost

confidence, but enables people to understand and learn to live with their own

impairment. It is not, however, always easy to make contact. Jenny, 61,

Laryngectomy, finds the invisibility of her impairment means that it is hard to locate

people in the same situation and difficult to relate to people at large.

I think people just don't know what to do about it. So they ignore it. They pretend we're

not there, which is what's happened to me.


Although there exists, amongst some, the desire to make contact with others with

similar impairments, not everyone is so positive. It can also be seen as oppressive and

demoralising. Vivien, 27, regards social isolation as an autistic paradise' while Madge,

62, tolerates her meetings at the Stroke Club because it is virtually her only form of

contact. She comments that if she were 'normal' it would not be her 'cup of tea' Sarah,

26 (Learning difficulty), although aware that she benefits from the security of the

hostel, finds it difficult to maintain control over her privacy. People 'coming in and

out ... really annoys me'

Notwithstanding the 'success' stories contained in this section it is clear that the

consequences of communication impairment can be very far-reaching. Inadequate or

inappropriate responses within the education and employment arena can impact,

negatively, on the individual's self-confidence, expectations and quality of life.

The attitudes of others, including professionals can be damagingly dismissive or even

obstructive, doing nothing to counteract feelings of isolation and vulnerability. Sadly,

for many of the respondents, concerted attempts to help themselves are hampered by

general misunderstanding.




Communication impairment and the obstacles faced

People with communication impairments frequently find themselves facing restrictions

and limitations in their everyday life. However, the idiosyncratic nature of each

impairment means that the difficulties may vary. A deaf person will not necessarily

encounter the same problems as someone with aphasia or dyslexia. While

acknowledging commonality of experience, the different types of barriers people face

are summarised in this section. Some practical strategies adopted by individuals and the

issues that need to be addressed are also given.

Environmental barriers

Just as those with motor impairments are obstructed by environmental factors such as

high kerbs and inaccessible transport, so some people with communication impairments

are restricted by the physical and linguistic environment. Noise can often interfere withintelligibility, formulation and understanding of speech and language.

Noise. People - Washing machine, - I move It's quieter

Susan, 33, Head Injury

Background noise Music in restaurants and things. That isolates us.


Aids and appliances

Another aspect of the physical environment concerns the provision of appropriate aids

and technological appliances. Talking books, computers, CD ROMs, facsimile

machines etc., are able to help transcend impairments that compromise the ability to

process language.

Access and availability, however, appears to be a relatively common problem. Kevin's

mother has fought with social services because Kevin, 29 (developmental aphasia),

'hates' his minicom. Unable to read as quickly as the minicom demands, he would rather

have a fax. Similarly Jack, 42 (head injury), is frustrated that counselling books are

unavailable on tape.

The language environment

People who use sign language make able witnesses to the disabling nature of an

inappropriate language environment.

..no friends that sign. Nobody that signs. They all speak.

Hailey, 19, Profound hearing/ visual impairment and memory and cognitive

problems.

In the case of stammerers, people can be unwilling to take the time to listen. For others,




time is not always given for them to understand. Ralph, 55 (dysfluency), found

keeping up at college problematic because 'It was always speech and they were always

going too fast'.

Structural barriers

Structural barriers arise when the services, resources, opportunities and support

systems are not available or fail to cater for specific needs and abilities. Although there

are those who have had positive experiences, for example one interviewee described

having a short period of personal support at work provided by STATUS, for the most

part these barriers are prevalent. The obstructions that exist, especially in the domains

of health, social welfare and education, may be even harder to negotiate when the

person's impairment makes it difficult for them to understand their options, explain their

requirements and object when things go wrong.

For many, the help, support and understanding they want or need, is simply

unavailable. John, 47 (dyslexia), felt that, rather than write a thesis at college, he

should have been assessed in other ways - 'I don't feel I should have been encumbered

with any of that'

Keith, 29 (development aphasia), found that the doctors he used to go to classified

him as having a low IQ. 'The lack of help and understanding left me far behind' .

Similarly, when attending interviews and explaining that he has a slight disability in

speech, the immediate response is 'we're not interested' .

Like Jack, 42 (head injury), many felt that they were 'crying out for help, but that they

didn't have any' . As far as Madge, 62 (acquired dysarthria) is concerned, everyone

in her position should have a social worker. Sarah, 26 (learning difficulty), suffers

stress and feels 'It would be wonderful if I had somebody to come and talk to me about

that' .

Informational barriers

Informational barriers arise when people experience difficulties finding out about vital

resources, services and their rights. In addition, individuals often face difficultiesgaining information relating to the nature of their impairment. Because information is

generally acquired and dispensed through language, written and spoken, people with

language processing impairments are further disadvantaged consolidating the sense of

being helpless and undervalued. Clearly, there is a need for information to be presented

in different formats.

There's no sort of central place where we get information.. I'm used to administration,

but you get plenty of people who go it alone especially who can't even use a cheque

card or do simple things in finance. They don't know where to start People are

frightened. They're in fear of administration and authority. - I called (a local disability service) to see if they had any information. Absolutely nothing Not even a piece of




literature. In fact, they thought I was an idiot.


In hospital I don't know money I don't know nothing, really nothing.

Cath, 45, Aphasia

I reckon the system ought to incorporate and get information from someone who

knows.

Anna, 46, Dyslexia

Attitudinal barriers

The accounts given in this study indicate that prejudice, pity, ignorance and hostility are

commonly encountered by people who have communication impairments. Barriers are

erected in every sphere, even by friends, family members, colleagues, GPs, therapists

and other more 'informed' individuals.

When you first lose your talk, you're shunned. Pushed down - No-one would speak to

me. They would always speak to the people around me.

Fred, 61, Aphasia

Does she like fish? Is she an old age pensioner? Why do they ask my daughter-in-law

and not me.

Madge, 62, Acquired Dysarthria

I have even had the experience when I've rung the hospital... used my servox... and I

got through to the A&E by mistake. The nurse said 'What's your game? The dog got

your voice?'


The question of disability

Strikingly, the barriers encountered by those interviewed were inherently similar in spite

of the different impairments. Because of the 'hidden' nature of communication

impairment, there is even uncertainty as to whether it constitutes a disability. Overall,the subject remains unacknowledged and misunderstood.

In some cases, people may not identify or understand their own impairment.

Nevertheless, often isolated and without support, it is difficult to counter the relentless

manifestations of ignorance, fear and prejudice that they face.

You go into a shop... all smiles. You open your mouth and it all goes. They get

embarrassed, frustrated, push you onto someone else.





Vulnerability

The data collected suggests that people who have communication impairments are

vulnerable in various ways. For one thing, it can be difficult to counter physical threats,

bullying and abuse. To summon help, or stand up to domineering characters is

particularly difficult. Sarah, 26 (learning difficulty) was physically abused by other

pupils at the first special school she attended. She became angry and upset, but was

unable to tell anybody why.

Made me so angry. And they didn't know what was causing it. So that's why I needed

help to calm me down. So they.. they didn't do anything for me, to help me with that.

And when I came home they saw these bruises and then they weren't very nice. And

they thought I would not go back to school anymore and see them.Sarah, 26, Learning Difficulty

Sarah's story is not an isolated one. Bullying experiences such as these are not

uncommon.

Vulnerability may also take less obvious forms. Many with communication impairment

find themselves at a loss when others patronise them or talk over their heads. Similarly,

there is the perpetual uncertainty about the future. Kevin, 25 (profound hearing and

visual impairment) looks ahead and is concerned about what will happen to him when

his mother, whom he relies upon, dies. His mother, Anna, tells us:

He's saying that when he's older, I'm going... when I'm dead and gone he'll live on his

own in a home. He's getting to the stage where he wants to know when you're going to

die.

Anna (Mother)

Stigma

As established early on in this report, communication impairment is associated with

difficulty establishing and maintaining relationships or fulfilling work and educational potential. The common experience is, overwhelmingly, one of marginalisation and

exclusion resulting in damage and stigma.

It's a case of writing us off as sub-normal. Another laryngectomee.. died only this year.

He had an operation. He was a very, very humorous man. His neighbours called him

'the Dummy'. He was very upset. And so was his wife who was foreign with limited

English.


I thought that everybody hated me and my parents hated me and they favoured mybrother and sister. And as I got older I began to realise it was me that was the pig and




I didn't have any friends at school and I obviously didn't have any friends at college

and so on and I was beginning to realise there must be something wrong with me. I

didn't know why I wasn't liked or anything. I had no idea why.

Vivien, 27, Autism

This section, once again, illustrates a serious lack of awareness of communication

impairments that can culminate in feelings of low self-esteem and, in some cases, real

unhappiness. Many of the respondents cannot obtain comprehensive, user friendly

information about the nature of their impairment and the help available. Similarly,

services and support systems are frequently inadequate or inappropriate.

Ensuring that communication impairment ceases to be invisible will be a real step

towards raising social barriers, be they environmental, structural or informational.

Dissemination of information in user-friendly formats along with easier access to aids,

appliances and assistants are immediate and practical solutions. These, and other

initiatives, supported by the changes brought about by education and disability

legislation, will help to create a culture where impairment no longer constitutes

disability.




Strategies for coping and the issues that need to be addressed

Many of those who took part in this study have developed means of reducing the

impact of their impairment. By making use of technology, adopting alternative practices

and engaging the help of others, they seek to minimise the restrictions and frustrations

that their impairment brings. The individuals interviewed also found ways to deal with

more insidious attitudinal barriers which they encounter.

Coping with stigma often involves attempts to hide the impairment - 'trying not to

appear too stupid' . There is also a tendency to avoid contact with others -especially

those (in the case of acquired impairment) who knew them before their impairment.

More positively, people were able to capitalise on their strengths and talents, become

assertive about their impairment and gain support by associating with others facing

similar difficulties. People with communication impairment, whether acquired or congenital, have to learn about their needs and abilities in an attempt to find an identity,

place and function. This process, idiosyncratic, complex and protracted, is compromised

when language and cognition are impaired.

Importantly, many of the respondents felt it is crucial for people to be 'taught to have a

positive appreciation of themselves.' For example, it is not only important to teach

dyslexic people how to spell and thus remedy the disability, but to focus on the person

as a whole.




An agenda for change

It is the strong belief of the Forum that those with communication impairments should

be actively valued for their strengths and armed with all the tools required to bypass or

overcome their impairment. In order to achieve this for the communication impaired, it

is necessary to ensure representation and support at all levels.

The findings of the survey and the report provide a compelling account of the barriers

which confront people with communication impairments as they seek to live full and

productive lives. The Communications Forum will be working to bring about change

and recommends:

1) Intervention & integration

better training for health, education and social care professionals on the implications of communication impairments, their identification and treatment.

effective working partnerships between people with communication impairments, their

carers and key professionals in health, education and social care to foster a more

integrated, holistic approach to treatment.

2) Support

the right to information in a format which is accessible for each and every


the right to support for people with communication impairments including peer support

groups, counselling, advocacy, interpreters, assistants and technical aids.

3) Raising awareness and tackling discrimination

every opportunity should be taken to publicise the impact of communication

impairments and develop greater understanding and ways to help amongst professionals

and the general public.

that amendments be sought to the Disability Discrimination Act and future civil rights

legislation to include people with communication impairments.

that until that time, the current Disability Discrimination Act is enforced to give

maximum benefit to people with communication impairments.

that disability equality training should cover all aspects of communication impairments.




Appendix 1 Methodology

The choice of methodology

The key feature of qualitative research is that it explores issues in the terms and from the perspective of the people whom it is about, rather than being determined by the views

and concerns of the researchers and professionals. In-depth interviewing, the

qualitative method which was chosen for this study, allows access to the 'insider' story.

This refers to people's experiences and accounts, their explanations of events, their

evaluation of services and resources, and their suggestions about issues which need to

be addressed. This method makes it possible to gather four different types of

information (as described by Richie and Spencer, 1994):

Contextual: identifying the form and nature of the experience

Diagnostic: examining the reasons for and causes of what happensEvaluative: appraising the effectiveness of what exists

Strategic: identifying new theories, policies, plans or suggestions

An additional reason for choosing in-depth interviewing as the methodology for this

project was the fact that the research team at City University was in the process of

completing a study of the disabling aspects of aphasia, based on interviews with fifty

aphasic people. They had gained considerable experience in conducting, analysing and

interpreting interviews. The study showed that many people who have communication

impairments such as aphasia, even those who have severe impairments, are able to give

rich and detailed accounts of living with loss of communication. These accounts canyield information both about major issues and concerns and at the same time depict the

detail and subtlety of experience.

Selecting participants

Sampling is one of the most important features of the design of any qualitative study.

Different types of sampling methods can be used, including theoretical sampling, in

which participants are selected on the basis of how they might illuminate particular

issues (Richie and Spencer, 1994). In this study, purposive sampling was used. This

involves the purposeful selection of a small number of participants to reflect the rangeof experience, rather than random selection of a large sample which is statistically

representative of the general population (as in quantitative studies).

In a large-scale study, members of each of the different groups and associations

represented by the Communications Forum would have been invited to take part.

However, the small-scale nature of the project meant that the target number was

restricted and potential respondents had to be sampled quickly and efficiently. The

decision was therefore made to select the sample across the different impairment groups

in order to reflect three main features:

different types of impairment




different age-bands (excluding children and elderly people)

different severities of impairment (in terms of impact on ability to communicate)

In order to ensure different types of impairment were represented, the sample included

people with acquired impairments as well as those who had impairments from birth. It

was also decided that people with multiple and complex impairments should be

included, as well as those with impairments impacting specifically on communication.

In addition, some people with speech impairments, some with language impairments,

and some with cognitive / linguistic impairments were included in the sample.

Severity of impairment proved difficult to judge. For example, someone whose life had

been affected in a major way by a severe dyslexia, would nevertheless be able to

communicate very effectively in an interview situation. Similarly, someone with a

severe dysarthria but intact language skills might effectively convey a powerful account

despite poor intelligibility. In the end, severity of impairment was defined in terms of

the difficulties which significantly affected the person's ability to take part in the

interview process. It was felt to be important that some people with more marked

impairments should be invited to take part, as so often severe problems with

communication lead to exclusion from studies of this kind. We wanted to ensure those

with severe impairments could also tell their story and register their concerns. Booth

(1996) puts forward a cogent argument for the inclusion of those who have learning

difficulties in qualitative studies of this kind, despite the apparent poverty of the data.

We would concur with his conclusions and extend them to apply to people with severe

cognitive and/or language impairments, whatever the cause:

Textbook methods of social research discriminate against people with learning

difficulties. Methods that rely on reading or writing or abstract reasoning or verbal

fluency may effectively exclude them from the role of respondent or informant in ways

that mirror their exclusion from the wider society. Too often the research problem of

engaging with people who have learning difficulties is seen in terms of the limitations of

the subjects rather than the limitations of conventional research methods. In this way,

the research enterprise itself perpetuates a view of disability as individual pathology.

People who lack mastery of this medium will not have their voices heard unless new

ways can be found of giving them a voice.

The final sample of 19 respondents included approximately equal numbers of males and

females, similar numbers across each of three age-bands, a spread of impairment types,

including some with acquired impairments, some people with complex impairments,

and some respondents with very marked communication impairments. While every

specific impairment is not represented in the sample, the final choice does cover a wide

range of experience and reflects the Communications Forum's breadth of interest.

Gaps in the sample

Although the original intention had been to include people with progressiveimpairments, it proved difficult to locate those who were willing or able to take part in




the short time available. Reflection suggested that the experience and concerns of this

group were likely to be different, and that the interviews might need to be redesigned

with this in mind. Time restriction meant that this group was omitted from the study.

Black and Asian people were rarely referred by the agencies and associations who were

helping to locate possible respondents. Should the study sample be developed, efforts

would be made to ensure that members of different ethnic communities are represented.

The sample(Please note all names and some personal details have been changed to protect

confidentiality)

Name (Age) Impairment type Communication in interview

Males aged 18-35

Tom (31) dyslexia no problemKeith (29) developmental aphasiano problem

Kevin (25) profound hearing & visual uses sign / writing / interpreter

impairment

Trevor (19) dysfluency no problem

Dewi (34) learning difficulty severely limited communication

Males aged 36-50

Ben (47) autism limited communication

John (47) dyslexia no problem

Jack (42) head injury no problem

Males aged 51-70

Ralph (55) dysfluency no problem

Fred (61) aphasia no problem

Females aged 18-33

Susan (33) head injury severely limited communication

Fran (24) learning difficulty severely limited communication

Hailey (19) profound hearing & visual signs / interpreter

impairment & memory /cognitive problems

Sara (26) learning difficulty no problem

Females aged 36-50

Cath (45) aphasia limited communication

Anna (46) dyslexia no problem

Vivien (27) autism no problem

Females aged 51-70

Jenny (61) laryngectomy occasionally unintelligibleMadge (62) acquired dysarthria difficult to understand




Interviews

Potential respondents were given information about the project and about what would

be involved if they agreed to take part. If they were willing to take part, a time and place

for the interview was arranged. In most cases, the interviews took place in the

respondents' homes, although a small number were interviewed at their place of work or

travelled to City University. Interviews lasted between 40 minutes and two hours and

were tape recorded, with the respondent's permission.

The interview schedule was designed to enable the interviewer to cover a number of

major topics in a systematic fashion. However, their unstructured nature allowed

questions to be posed in the way which was most accessible for the respondents. Given

the widely varying nature and severity of respondents' impairments, communicative

needs and abilities, adapting the questioning proved quite challenging to the

interviewers, each of whom has a particular specialism in only one field of speech and

language therapy. It was particularly challenging to undertake interviews with

respondents who had profound sensory losses , and who needed the support of an

interpreter, and to interview those with marked cognitive and/or language impairments.

Often, these interviews remained focused on very concrete issues, on the here and now

and on immediate concerns. They elicited very brief, limited responses. They did not

yield the rich insights and reflections of the other interviews. It was nevertheless felt

that these interviews, despite being somewhat 'thin', constituted valuable additions to the

data. Their inclusion ensured that a range of experience was being sampled and did

sketch out the main concerns and preoccupations of the respondents.

Topic guide

Preamble

purpose of study

focus of study on communication

outline of key issues

likely length of time for interview but stop if need to

use any form of communication

tape recorder

confidentiality

1. General information

age

household / family

how do you spend your time?

2. Health issues / physical impairment

current major health problems

physical assistance / support used / needed

services encountered if relevant3. History of communication impairment




what difficulties with communication do you have?

when did this start

cause?

help sought

what has been useful / not useful?

what might have helped?

4. Education

where / type / for how long? (including FE)

levels of education reached

expectations / careers advice

relationships with peers, teachers

experience of support services

Probe: thinking about impact of communication impairment

what do you enjoy?

what got in the way? (environment / structure / attitude / information)

how do you react?

what helped / would have helped? (environment / structure / attitude / information)

5. Work?

paid / unpaid / voluntary? impact of acquired

aspirations impairment if relevant


what do you enjoy? what gets in the way? (environment / structure / attitude /

information)

how do you react?

what helps / does not help? (environment / structure / attitude / information)

6. Material / financial concerns

sources of income impact of acquired impairment

adequacy if relevant

prospects

information and access to supportany special concerns? wills / sorting affairs

what if money were no object? if relevant

7. Spare time / relaxation

main interests and ways of spending spare time


what do you enjoy? what would you like to do?

what gets in the way? (environment / structure / attitude / information)

how do you react?what helps / does not help? (environment / structure / attitude / information)




8. Relationships

part of any particular groups?

partner / special relationships

children

other family

friends

other


how has communication impairment affected each type of relationship?

what gets in the way? (environment / structure / attitude / information)

how do you react?

what helps / does not help? (environment / structure / attitude / information)

9. Concluding questions

Any other issues not raised in this interview?

Would any of these issues be particularly important for you?

Is there anything that the communication impairment stops you from doing that you

really want to do?

Relative importance of communication / other impairment if relevant

What advice would you give to someone in a similar situation?

Role of Communications Forum

Issues for Communications Forum to take up

Analysis and interpretation

The tape-recordings of the interviews were transcribed verbatim. A preliminary reading

of a small number of interviews yielded some major issues. These were used as the

basis for the design of the 'charts'; the main analysis tool of the 'Framework' method.

Three charts were drawn up each with a set of major headings and subheadings, and the

utterances of each respondent on each issue were systematically transferred to the chart.

This allowed the data to be examined in terms of themes and concepts whilst at the same

time the sense of each individual person's narrative could be retained. The

Communications Forum has been provided with copies of the charts and transcripts.

The chart headings and sub-headings were as follows:

Data analysis: chart headings

Chart 1: the impairment

Core information about each respondent

Effects of condition

generalon speech / language




on language function / communication

other

Experience of health, social care and other services

what received

evaluation

Knowledge of impairment

Coping

strategies (i.e. practicalities and tactics)

styles (i.e. ways of thinking about impairment and beliefs)

Chart 2: the impact of communication impairment

On work/education

On finances: key limitations

On personal relationships

On leisure / relaxation

On hopes / aspirations

On personal identity

On collective identity

Chart 3: communication impairment and disability

Disabling barriers

environmental

structural

informational

attitudinal

other

Vulnerability

Stigma

What needs to be done

References

Booth, T (1996) Sounds of Still Voices: Issues in the use of narrative methods with

people who have learning difficulties. In Barton, L (Ed) Disability and Society:

Emerging Issues and Insights (London, Longman).

Richie, J and Spencer, L (1994) Qualitative Data Analysis for Applied Policy Research.

In Bryman, A and Burgess, R (Eds) Analysing Qualitative Data (Routledge, London).




Appendix 2 Terminology

Aphasia Loss of speech (receptive and / or expressive) due to brain damage

caused by stroke, head injury, brain tumour or genetic factors.

Autism An inability to relate to other people. 50% of autistic people have no

useful speech.

Brain / Head Injury Destruction of brain cells. May cause difficulties in areas

concerned with speech and language or related areas such as

memory, concentration, reading and writing.

Cognitive Disability Problem with acquiring, or loss of, knowledge including

perception, intuition and reasoning.

Deafness / This is a diverse group with widely differing needs for

Hard of Hearing hearing communication. They range from those who are hard of

hearing and can understand speech with the use of hearing aids

to those who are profoundly deaf from childhood whose needs

may be met through sign language.

Deaf / Blindness A combination of visual and auditory impairment. Rubella and

Usher syndrome are the most common causes.

Dysarthria A group of related speech disorders caused by disturbance to the centralnervous system.

Dysfluency See Stammering.

Dyslexia A neurological dysfunction leading to difficulty with words

affecting reading, writing and some aspects of learning.

Dysphasia Developed or acquired disorder of language resulting from brain damage

caused by stroke, head injury, brain tumour or genetic factors.

Laryngectomy An operation to remove the voice box, usually due to cancer.

Learning Cognitive impairment acquired before, during or after birth that

Difficulties may result in difficulties developing speech and language.

Stammering Affects fluency of speech and confidence of communication.

Strokes A blood clot or haemorrhage affecting flow of blood to the brain. Often

causes speech and language problems.

Communications Forum, Camelford House, 87-89 Albert Embankment, London SE1


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7TP

Telephone: +44 020 7582 9200

Fax: +44 020 7582 9606

Email: [email protected]

Web site: http://www.communicationsforum.org.uk

Registered charity number 1042463

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