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Disability & Society, Vol. 15, No. 3, 2000, pp. 389409

Whats in a Name? The

Implications of Diagnosis forPeople with Learning Difcultiesand their Family Carers

MAUREEN GILLMAN, BOB HEYMAN & JOHN SWAIN Faculty of Health, Social Work and Education, Northumbria University at Newcastle,

Coach Lane Campus, Coach Lane, Newcastle NE7 7XA, UK

ABSTRACT Diagnosis plays a signicant role in the shaping of individual identities and

the quality of life for people with learning difculties and their family carers. Diagnostic

labels are constitutive of peoples lives, in that they bring forth pathology, create problem-

saturated stories and construct careers as patients and cases. Disabled identities of people

with learning difculties remain largely embodied and within the denitional control ofprofessionals. Whilst the acquisition of a learning difculty label can open doors to resources,

it can also lead to disrespectful and dehumanising treatment, and the severe restriction of

opportunities. This paper argues that a social constructionist perspective can offer a way of

thinking about diagnosis that challenges the so called facts and truths that underpin and

support it. Working in partnership with people with learning difculties in relation to

diagnosis requires professionals to relinquish power by resisting the temptations of certainty

associated with diagnostic practices.

Introduction

This paper discusses aspects of diagnosis as they affect the lives of people with

learning difculties and their relatives. Social constructionist theory (Foucault,

1974; Gergen, 1985; Burr, 1995), which underpins the social model of disability, is

used to deconstruct diagnosis and its discursive practices. White (1993) argues that

deconstruction is concerned with procedures that subvert taken for granted realities

and practices, and render strange these every day realities by ob jectifying them (p.34). Diagnosis can be dened as a system of analysis of peoples lives based on the

specialist knowledge and expertise of professionals. It is a tacit agreement within

particular disciplinary areas, to make sense of certain phenomena or events in a

certain way (Gergen et al., 1996). Diagnosis is impairment based and tends to focus

Correspondence: Dr Maureen Gillman, 3 The Oval, Benton, Newcastle NE12 9PP, UK.

ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/00/030389-21

2000 Taylor & Francis Ltd

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390 M. Gillman et al.

attention on the individual, rather than the relational, social or structural context.

Goble (1998) argues that:

few groups have been so completely subject to medicalisation in our

society as people with learning difculties. A key component in their

historic and continued oppression is the medical professions assumptionof the powers of denition, classication and diagnosis on the basis of

criteria such as IQ, adaptive behaviour and bio-genetic proles or syn-

dromes. (p. 834).

Within the eld of health care, the notion of diagnosis is complex; some forms

of diagnosis would be welcomed if not demanded by patients and generally regarded

as helpful. Included in this form of diagnosis would be the identication of

life-threatening diseases such as meningitis, malignant tumours, and traumatic

illness (such as broken limbs or a burst appendix). Generally speaking, the conse-quences of such diagnoses may be regarded as benecial as they open doors to

sources of treatment and social support. However, even good professional practice

leading to an accurate and life-saving diagnosis can have detrimental effects in terms

of the medicalisation of a persons life.

In contrast, other types of diagnosis may be regarded by some individuals and

their families as stigmatising and unhelpful, and may lead to impoverished life-styles

and exclusion from mainstream society. Examples include classication of mental

illness such as schizophrenia, identi

cation of bio-genetic pro

les such as Downssyndrome and illnesses such as HIV and AIDS.

One typology of medical diagnosis might include those conditions that might

generally be regarded as physical ailments, that is, those which are seen to reside

within the body, such as infection or trauma. Secondly, there are conditions where

the location of the illness is less certain and fall into the category of mind/body

problems. Examples of which include ADD (attention decit disorder) ME and

somatic disorders. Finally, there are those conditions which fall into the domain of

mind, such as mental illness. Generally speaking, the more a condition is dened

as physical, the more the object of investigation is the body, rather than the mind,and the more condent and certain will professional be in offering a diagnosis. The

implications are that the temptations of certainty encourage professionals to seek

biological explanations for mental disorder, and to make biological links between,

for example, the causes of learning difculties and the higher incidence of mental

disorder in people with learning difculties or recent links between Downs syn-

drome and the early onset of Alzheimers disease. Where biological explanations are

not explicit, the dominant discourse of medical science has given credibility to the

development of classi

cation systems such as DSM and IQ.The problematics of diagnostic systems are many and diverse. Mind and/or

body classications of learning difculty rmly locate the problem and the solution

within the individual, thereby ignoring structural oppression and discrimination,

such as poverty, and physical and attitudinal barriers.

The paper draws on research undertaken by the authors at the University of

Northumbria and Sandie McKean from the Learning Disabilities Federation, North

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Whats in a Name? 391

Shields. The major focus of the research has been the development of Primary

Health Care for young adults with learning difculties from the perspectives of

people with learning difculties, family carers and professionals. A qualitative

methodology was used within a participatory research paradigm (Zarb, 1992).

Semi-structured interviews were undertaken with people with learning dif

culties,family carers and professionals, including social workers, GPs, psychiatrists, nurses

and dentists. In addition, three focus groups were heldtwo for people with

learning difculties and one for local authority professionals. A conference run by

and for people with learning difculties was also organised which addressed the

research question. The views of the participants have been incorporated into the

research and inuenced its direction. The names and other identifying features of

the participants have been changed in order to safeguard anonymity.

The issue of diagnosis and labelling was not one that we were actively pursuing

in the research project, but something that some participants, namely, family carersand people with learning difculties, wanted to tell us about. This paper does not

report the ndings of the research project per se, rather it draws on the research in

so far as it is relevant to, and illustrative of the argument that diagnosis plays a

signicant role in the shaping of individual identities and the quality of life, both for

people with learning difculties and family members. The subject of diagnosis and

labelling was not such a big issue for the professionals who participated in the

research. However, given that the voices of people with learning difculties and their

family carers are often marginalised and disquali

ed through the privileging ofprofessional accounts, we take the view that their stories should be told. The kinds

of diagnosis that have been discussed with participants include initial identication

of a learning difculty, psychiatric diagnosis, psycho-social characterisation of peo-

ple with learning difculties and their relatives, and diagnosis of mild, chronic,

severe and life-threatening physical illness and impairment. The paper focuses on

ethical and philosophical issues in diagnosis, rather than the pragmatics of pro-

fessional practice. Through these particular lenses, it will attempt to answer the

following questions; Who has the power to name? Who seeks diagnosis and why?

How reliable are diagnostic systems? What part does diagnosis play in the mainte-nance of professional power? What role does diagnosis play in creating potentials

and restricting possibilities for people with learning difculties?

Who Has the Power to Name?

Foucault (1977) argued that the professional disciplines characterise, classify and

hierarchise individuals in relation to one another through the process of observation

and surveillance. The outcomes of such professional practices may disqualify andinvalidate those who are subject to them. The dominance of medical science in the

eld of learning difculty has been the main instrument for excluding people with

learning difculties from society (Ryan & Thomas, 1991, p. 15). Medical science

and its discursive practices, such as diagnosis, have been central to the construction

of the subjectivity and the objectication of people with learning difculties. That is,

they have been made the subjects of the medical professions attention and theoris-

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ing and have become objectied as cases and problems (Gillman et al., 1997).

During this century, learning difculties has come to be seen as an illness or disease

that has led to the medicalisation and the imposition of the sick role on people with

learning difculties (Brechin, 1999). Learning disability has become a professional

specialism in the

elds of psychiatry, social work and psychology. The constructionof diagnostic classication systems, amongst other functions, serve to mark out the

boundaries of professional territory. The history of institutional care for people with

learning difculties contains many examples of oppressive and dehumanising prac-

tices, justied within the rhetoric of medical knowledge, protective care and pro-

fessional practice (Di Terlizzi, 1994; Brechin, 1999).

People with learning difculties and their organisations suggest that categorisa-

tion by syndromes and labelling is stigmatising, and can lead to the exclusion

of individuals from mainstream society (Sutcliffe & Simons, 1993). Studies have

shown that people with learning difculties do not necessarily recognise themselvesas being members of a devalued social group, but see themselves as essentially the

same as able-bodied people (Booth & Simons, 1989; Harris, 1995). They do not

wish to be dened by their disability, but to be seen as people rst (Sutcliffe &

Simons, 1993).

Oliver & Barnes (1998) suggest that denitions of disability can be divided

into two groups. Ofcial denitions produced by professionals and academics, and

those developed by disabled people and organisations controlled and run by

them (p. 14). Harris (1995) notes that people with learning dif

culties and theirorganisations have expressed dissatisfaction with some aspects of classication and

labelling, which arise from diagnostic procedures such as IQ tests. Harris (1995)

suggests that:

People with learning difculties themselves have clearly indicated that if

labels are to be used they would prefer to use the term people with

learning difculties Public services, however, have increasingly adopted

the term people with learning disabilities as the norm. (p. 344)

However, Brechin (1999) points out that, whilst the term people with learning

difculties puts people rst and emphasises that people can learn, it also locates the

problem in the individual. She goes on to say that:

If disability is disallowed in favour of learning difculties it then becomes

quite difcult to nd the language to raise questions about the enabling or

disabling processes in society which may be at work If the whole

problem, by denition, lies with the individual, then our understandings and

interventions start and stop with the individual. (p. 1)

Walmsley (1994) also prefers the term learning disability as it allies with disability

and the social model. She argues that people with learning difculties have been

legislated for as if they had more in common with people who are mentally ill, than

with other disabled people. She believes that the term learning difculty places the

problem within an educational/psychological framework (p. 148).

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Over the past 20 years disabled activists within the disabled peoples movement

have vigorously challenged the dominance of the medical model of disability. Oliver

& Barnes (1998) argue that:

People with impairments become objects to be treated, changed, improvedand made normal While medical intervention to treat illness and disease

may be quite appropriate, it is increasingly argued by a growing number of

disabled people that it is quite inappropriate to treat disability. (p. 15).

The social model of disability asserts that disability arises from the socially con-

structed attitudinal, physical and structural barriers created by the dominant ideol-

ogy of disablist society, rather than an individuals intellectual, physical or sensory

impairment. The disabled peoples movement has recognised that medical

denitions can play a signicant role in their individual and collective disadvantage(Oliver & Barnes, 1998, p. 14). Chappell (1998) argues that the social model of

disability can equally apply to people with learning difculties. However, this

particular area of disability is neglected within debates about the social model in

terms of its analysis of the experience of people with learning difculties and

strategies for change (p. 211). The strength of the social model of disability lies in

its emphasis on social justice and the unied voice of disabled people as a social

group. At the same time, organisations like People First have fought the dehuman-

ising and objectifying effects of the categorisation of people with learning dif

cultiesas members of a devalued group. Their voices have begun to be heard through

stories of individual and collective accounts of lived experience (Atkinson, 1993;

Booth & Booth, 1996). Brechin (1999) suggests:

The resistance (by the proponents of the social model) to separate

identities may play some part in the difculties of connecting the social

model of disability with the experience of people with learning difculties.

Their trajectory of development and organisation as well as their issues

have been different, allowing different, often personal and individual, kindsof story to emerge. (p. 7)

Mendez et al. (1988) suggest that society empowers certain groups of people to

make denitions of normality and abnormality, and of health or sickness, and in

consequence, the right to be heard and be obeyed in those domains (p. 145). The

knowledge statements of professional groups, such as medics and psychologists, are

invested with the status of truth because they uphold dominant discourses in

society, such as individualism, and overcoming personal adversity or deviance. Thedisabled peoples movement has made signicant progress in highlighting the

difference between disability and impairment, thus affording disabled people a

greater say in dening their own identities. The distinctions between disability and

impairment in people with learning difculties remains less clear, which allows

professionals the opportunity to shape identities through the individualising tech-

niques and normalising judgements (Foucault, 1977) of diagnosis.

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Who Seeks Diagnosis and Why?

The dominant discourse of medical science is deeply rooted in the culture and belief

systems of the general public as well as professionals. Gellner, cited in White (1989),

argues that such traditional thought systems are rigid and implicit beliefs, which are

considered to be the natural order of things:

That such beliefs are not explicitly articulated renders them all the more

pervasive, compelling and impervious to change. (White, 1989, p. 48.)

Most people seek explanations for events and experiences that they regard as illness

or disease, in order to relieve the stress or ambiguity of the unknown. Wynne et al.

(1992) argue that reframings of illness, shifting the focus away from the individuals

body, have not reversed the preference for understanding illness in biological/illness

terms(

p. 15)

.Our research suggests that expert knowledge is not necessarily the exclusive

territory of professionals. Family carers make it their business to access what they

consider to be appropriate medical knowledge, which is then incorporated into their

explanations about their relatives symptoms and behaviour. Peters et al. (1997)

investigated sources of patients knowledge and authority in their relationship with

doctors. They found that:

lay explanations are not only rational and sophisticated, but also no less

scienti

c than those held by doctors. (p. 559)A family carer told us how she had been convinced for many years that her son was

autistic, a diagnosis that was nally given when her son was in his twenties.

When Malcolm was growing up, we read articles about autism, and I

approached the school. I was told you are always looking for answers,

accept that Malcolm has got learning difculties and then you will over-

come all of your problems.

There are many reasons why family carers seek a formal diagnosis for their son ordaughter. Gergen et al. (1996) suggest that

Diagnostic systems give a sense of legitimacy condence and predictability,

both to the professional and the client (p. 3)

A label can be an explanatory device that can be useful to family carers in their

dealings with the general public. Misunderstandings of individuals behaviour can

lead to censure and disapproval of the parent and the person with learning

difculties. Two participants commented

with the autistic child we fostered, I used to want a sheet of paper to

hand around to people to explain what was going on.

and

he looks like a naughty little boy who had control over me. This is what

it looked like and its how the public picked it up as well.

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The need for a formal diagnosis also seemed most pressing for those carers whose

sons or daughters learning difculty was not immediately visible

you are going through all the dilemmas of accepting that you have a

child that is different I used to wish that he was in a wheelchair or that

he had Downs syndrome, so people could see he was different from otherchildren.

Many labels signify membership of groups devalued by society and impose a

stigmatised identity on the individual. Participants also indicated that there is a

hierarchy of stigmatised identities. They expressed ambivalence about having to

justify and rationalise their sons or daughters behaviour to strangers. However, this

seemed preferable to members of the public drawing their own conclusions that the

person had a drug problem or a mental illness, labels which, in the hierarchy of

stigmatised identities, seemed much worse.The belief that some labels are more stigmatising than others may lead to a

search for an alternative label that is regarded by the person as less stigmatising. For

example, some participants actively sought diagnoses of physical impairments, such

as hearing loss, as an explanation for their childs behaviour. Being diagnosed with

a hearing or visual impairment was perceived by the participants to be less stigmatis-

ing than that of a learning difculty. A family carer commented:

You see I was still at that part where it was hard I was wanting to say

Malcolm has got a hearing problem He is not handicapped. I could notcome to terms with that. Even to this day I still nd it hard because he

looks so normal.

One possible explanation for the preference of some family carers to have their sons

or daughters diagnosed with a physical impairment may be that signs and symptoms

of physical illness tend to be explained by causal agents outside the self. That is, the

illness is aficting the self but does not constitute the self (Wynne et al., 1992, p.

12). Conversely, a diagnosis of learning difculty is perceived by many family carers

to embrace the whole person and shape their identity.The notion of normality is a highly complex and contentious concept. The

term was not in common usage in Britain before 1840 when the growth of

industrialisation inuenced the classication and control of individuals who were

seen as unable or unwilling to contribute to production (Oliver & Barnes 1998, p.

15). The normal/abnormal dichotomy (Oliver, cited in Oliver & Barnes, 1998;

Swain & French 1998) is central to the medicalisation of disability and has been

used as justication of oppression, discrimination, and marginalisation of disabled

people: Interventions, practices and values of would-be helpers promote the

normalityabnormality ideology and have been dominated by, and

founded on it. (Swain & French 1998, p. 23.)

For example, the dominant discourse of normality is central to Normalisation/SRV

theory (Wolfensberger, 1984), which has been highly inuential in the development

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of social policy in relation to de institutionalisation and community care for people

with learning difculties (Chappell, 1992). Whilst normalisation/SRV has had some

material benets in terms of improved quality of services, it maintains the dominant

societal position that people with learning difculties need to conform to the norm,

thus devaluing difference and diversity of those concerned. Chappell(

in press)

makes the following criticisms of normalisation:

the clear focus of normalisation is services. It neglects issues outside the

narrow world of service provision which make up the wider context of

the lives of disabled people (for example, poverty and the poverty trap, the

isolation of disabled people from each other, the relationship between the

social construction of disability and wider social, economic, political and

historical forces). (p. 7)

One outcome of the development of specialised, formal knowledge associated withlearning difculty has been the marginalisation, disqualication and rejection of

knowledge and expertise of individuals and their family carers:

the more local or folk knowledges that have been generated in a persons

history are marginalised, often disqualied and displaced by the formal and

expert knowledges of the professional disciplines. (White, 1997, p. 3.)

For example, a family carer of a young man who had been detained in hospital

under the mental health act, became very disillusioned about the benets of the

subsequent treatment he received:

He is going on his hands and knees and crying and he is telling you he

wants to be home. He has done it in front of all of the staff. He has got his

coat and his bag of teddies and cars and even his clothes, trailing the

ground and saying home. They have actually locked away his clothes and

the cases, and totally ignored him. I did say at the last meeting you all sit

around with your pens and your papers and think you are doing some good

but as far as Im concerned, you have not improved anything. Everything

that they do, I can do at home with the support of my friends.

One way of looking at diagnosis is to see it as thin description (White, 1997)

because it is typically arrived at by the observations of outsiders who are

studying the lives of other people (p. 15). Such diagnosis tends to exclude systems

of interpretation and understanding used by those who consult professionals and

their family carers. A family carer told us about an incident during a period when her

son was a patient in a hospital for people with learning difculties:

If he is distressed you will notice the colour fading from his face, pains inthe stomach and he is rubbing his eyes and he is tired. Now to me that

means that somebody has asked him to do something (he does not want to

do). So the named nurse came with some medicine for constipation. He

says I noticed Malcolm did not look well I say he has not got consti-

pation. He has good bowel movement. You have asked him to do some-

thing he didnt want to do. In any case he (the nurse) must have thought

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about it and he came back and said You know you are really right, we had

asked Malcolm to go for a walk and he said he was not well and wanted the

toilet. And when I went, there was just like a little marble there and

automatically thought it was constipation. The nurse said he would stop

the constipation medicine but I noticed at the last meeting that he is backon it again and, you know, there is nothing wrong with his bowels.

Thin descriptions not only exclude the voices of those being diagnosed, but also

marginalise systems of interpretation and understanding that enable people to

negotiate shared meanings for events or behaviour. Another family carer felt that

professionals often undermine or ignore their knowledge

It is challenging you as a carer or a relative. It is challenging your own

professionalism as a carer.

In our research, participants generally sought diagnosis in the belief that

identication and classication of a set of symptoms would be followed by treat-

ment, intervention, or social support that would ultimately lead to an improved

life-style for the individual and their families. In relation to medicine, the dominant

discourse in our society seems to be that the doctor will act as the observant scientist

with the knowledge and skills to unravel the diagnosis. The linear progression from

history, examination, to diagnosis, and then treatment seems unassailable in its logic

and effectiveness. Although there are many situations in which professionals mayimpose a diagnosis upon a person with learning difculties through the medium of

expert power, there are also occasions when family carers seek the ofcial, expert

diagnosis.

The belief that it only needs the right test to secure a diagnosis; that surely there

must be someone who can say what is wrong, is strongly held in our society.

Arguably one of the most important contributions of the disabled peoples move-

ment has been to begin to claim a positive and valued image and identity for

disabled people (Oliver & Barnes, 1998). Whilst the stigma attached to physicaldisability is being eroded, there is less evidence to suggest that this is occuring in

relation to learning difculty.

The next section of the paper will examine the fallibility of diagnostic systems.

How Reliable are Diagnostic Systems?

Generally speaking, there is an expectation that professionals will specify certain

truths about the human condition, based on the certainties of scienti

c rigor andformal knowledge. However, such certainties do not stand up to close scrutiny.

For example, in the undifferentiated territory of primary care consultation, 30%

of encounters between patients and doctors end without a diagnosis. Tests

are negative, explanatory models fail, symptoms do not respond to treatment,

or they disappear only to reappear in another guise (Gillman & Tomson 1998).

Within the eld of learning difculties itself, Sutcliffe & Simons (1993) argue

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that 60% of people with a mental handicap label have no clear cut diagnosis.

Furthermore:

mental handicap is often seen as inability to learn basic skills like

literacy, though some people with a mental handicap can read and write.

Conversely there are something like six million illiterate people in the UK.

Most are not seen as having a mental handicap (p. 28)

A number of participants in the research commented on the inappropriateness and

unreliability of some diagnostic procedures and instruments for assessing people

with learning difculties. Hearing tests were frequently criticised by participants:

I didnt think the hearing tests were very good for somebody who had a

learning disability You had to sit at a machine and press this if you heard

a ring How was he going to do that? But they said that there was nothing

wrong with his hearing. I voiced my opinion then that I thought the tests

were not right for someone with learning disabilities.

Similar difculties were experienced by some participants when visiting the optician.

A care worker from a respite service told us:

Ive noticed with a lot of people with learning difculties that when they

come to the end of an eye test, they are no further forward. It is a failing

of the optician service that they give no regard to how you could get them

to do an eye test and have regard for their needs.

Such examples highlight how diagnostic systems are often based on the assumptions

that everyone is able to read or comprehend speech. These normative assumptions

exclude other groups in society, too, such as those who do not speak English, and

people with dyslexia or aphasia.

Scope for confusion also exists in the area of mental health. Whilst arguing that

mental illness in people with learning difculties is more prevalent than in the

general population, Moss et al. (1998) acknowledge that it is also more difcult to

identify:

partly because of the difculty of distinguishing which are symptomatic

of mental illness from those which may be long term consequences of

developmental disability. (p. 174)

Gravestock et al. (1996) put forward the view that standard diagnostic criteria for

classication of mental illness are of limited use when assessing people with learning

difculties. For example, it is impossible to diagnose schizophrenia in people with

limited communication who cannot put their thoughts into words ( James &

Mukherjee, 1996). Symptoms of schizophrenia include delusion, the diagnosis of

which is not straightforward:

Delusions are false beliefs. In people with learning difculties it can be

difcult to distinguish delusions from strongly held and unusual beliefs.

The commonest delusions are persecutory; mistaken beliefs of being

watched or inuenced in some mysterious way. People with learning

difculty are often closely supervised and spoken of behind their backs, and

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it is important to differentiate delusions from the concerns of people who

believe, perhaps with justication, that people are talking about them or

secretly observing them. ( James & Mukherjee, 1996, p. 92.)

Despite the fallibility of diagnostic systems, once a diagnosis is made, it tends to be

seen as an established, objective truth. A diagnosis can have far reaching conse-quences in shaping the identity of those subject to it. Harris (1995) describes the

consequences of IQ testing for people with learning difculties:

IQ level remains the single, most important criterion in dening group

membership and, despite the inexactitude of IQ assessment, it is very

difcult for an individual to leave the learning disabled group after he or

she has been categorised in this way. (p. 348)

How Does Diagnosis Maintain Professional Power?

Gergen et al. (1996) warn us that diagnosis is based on the assumption that

language is representational and can accurately depict reality (p. 3). Such

assumptions about the certainty of diagnostic realities tempts professionals to enact

their privilege by imposing normalising standards on individuals (Amundson et al.,

1993). A young woman with learning difculties told us:

If you have anything wrong like depression or Alzheimers, then you lose all

your power. Doctors do things like put you in hospital and give you tablets

to calm you down. It makes you feel worse.

Diagnoses are socially constructed in language and represent an agreement to make

sense of certain phenomena according to particular theoretical models or frame-

works. In which case, diagnostic realities are very much dependent upon the

theoretical and ideological lenses through which professionals view phenomena.

Rossiter (1993) suggests that we listen to our clients through theoretical lters

generated by political relations (p. 78), whilst Korman (1996) argues that:

Diagnosis and assessment are determined from the theories that

guide assessment and diagnosis. (p. 282).

Here, Korman is making the point that diagnostic frameworks are not neutral but

are founded on theoretical and ideological assumptions that organise what can be

seen and conversely, what should be ignored.

From this perspective it can be argued that we do not observe dysfunctional

behaviour. Rather, we observe behaviour which we label as dysfunctional, given a set

of values which one holds as functional (Gergen et al., 1996).

Take, for example, the view that people with learning difculties are more

prone to mental illness than the general population ( James & Mukherjee, 1996;

Moss et al., 1998). This view was shared by a psychiatrist who participated in our

research. He went on to explain what, in his view, were the causative connections

between learning difculty and mental illness:

Whatever caused the brain damage that caused the learning difculty, may

also cause the mental health problem I think mental health problems are

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diseases of the brain, people with learning disabilities, by denition, have

problems with their brain.

Viewing the behaviours of people with learning difculties through these bio medical

and psychiatric lenses led this participant to look for certain diagnostic realities:

Challenging behaviour is only a symptom and I think my role is often to

nd out what the diagnosis isdepression, schizophrenia, all sorts of things

except challenging behaviour.

Once challenging behaviour is re-framed through diagnosis as a psychiatric dis-

order, other dominant discourses such as medication and legislation such as the

mental health act, can be used to justify a host of interventions and even loss of

liberty. Sutcliffe & Simons (1993) assert:

Language can be used to control people. The existence of a label is often

used as a justication for treating a person in a way that would not be

acceptable to others without the label. (p. 23)

A diagnosis of learning difculty may bring forth in professionals deeply rooted,

discriminatory and oppressive assumptions about a persons worth, which can be

used to justify the exclusion of an individual from treatment such as organ transplant

and dialysis. Physical ailments that may warrant diagnosis and treatment in able

bodied people, may be accepted as part of the syndrome in a person with learningdifculties. A worker from a support service commented:

If you or I as an adult began to develop a continence problem, we would

be sent for screening and possible treatment. If youve got learning

difculties and you have developed this in adulthood, it is accepted to be

just part of learning difculties.

Furthermore, evidence from research participants suggests that people with learning

difculties are not offered psychological help in relation to difculties such as

obsessional or phobic behaviours (Bender, 1993; Rees, 1996). The family carers of

a middle aged woman with learning difculties told us that their daughter had, over

a period of 3 years, developed certain obsessional traits that were becoming distress-

ing for all concerned. The GP referred the woman to the community mental health

team on several occasions but she was never offered a service.

The acquisition of the learning difculty label can shape the ways in which

professionals relate to the person concerned. Professionals who view people with

learning difculties through a bio medical lens may not be able to relate to the

person. Many participants reported disrespectful and dehumanising treatment fromdoctors who appeared unprepared to share power and expertise by taking time to

explain diagnostic procedures and treatment. A common complaint was that doctors

make little or no effort to talk directly to the person. One man told us:

I went to the doctors with my Mam and he talks to her. He never talks to

me. My Mam says listen to Christopher, but he says I dont want to talk

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to Christopher, I want to talk to you. I tell them Ive got a mind of my

own.

Kerr et al. (1996) state that the quality of the patient/doctor consultation is very

dependent upon the quality of the communication achieved. They make the point

that

Many doctors will have limited training in specic strategies to employ in

their consultations with people whose language is poor. (p. 4)

Some of the participants with learning difculties clearly did not understand what

was happening, or what the outcomes meant in relation to their symptoms. A man

with a heart problem went to his GP for regular checks on his blood pressure, but

was unaware of the signicance of the test:

Int: Did they take your blood pressure?

M. Yes

Int: Did they explain about thatwhat they were looking for?

M. Not all that much

Int: So you do not know what high or low is?

M. No.

Several participants had received a diagnosis of obesity and had been placed upon

diets. Two comments illustrate the breakdown in communication between doctor

and patient:

Ive got one doctor. Hes right snotty with me. Hes got an attitude. He

told me to go on a diet and I just got up and walked out.

and

The doctor tells you that you are so fat you look pregnant which makes youfeel upset.

This is in stark contrast to some participants who had positive experiences of

consultations with professionals which are exemplied by the comments of a woman

who had investigations for a bowel problem:

The hospital where I have been to see about my bowels treated me like a

person. They were excellent in x-ray and told me what they were doing and

why. They made an embarrassing procedure OK.

Positive experiences seemed to be associated with the willingness and abilities of the

professional to treat the person concerned with respect, to acknowledge the patients

(and family carers) expertise in relation to how a particular condition effects them,

and to be prepared to share power by providing the person with appropriate

information and sources of support. Unchecked power/certainty seems to arise from

reliance upon the reality and truth status of professional theories and their

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discursive practices, such as diagnosis. Professionals who act with such certainty

have fallen into the trap of believing their own professional rhetoric.

Diagnosis: Creating Potentials or Restricting Possibilities?

From a social constructionist perspective, the outcomes of assessment and diagnosis

are not representations of objective truth or reality about an individual, although

many professionals act as if this were so. Gergen et al. (1996) suggest that:

Diagnoses, ofcial and unofcial, often concretise identities that limit

people; they create black boxes with few, obscure exits, and they form

obstacles to more viable and liberating self denitions. (p. 5)

The act of observation changes that which is observed and people agree on what

constitutes reality through the medium of language and communication. Reality is

therefore socially constructed in language but it is not the ONLY realitymany

other versions are possible. Viewing a diagnosis as one possible explanation amongst

many allows all stakeholders in the process to evaluate the usefulness of a diag-

nosis, and permits the rejection of those explanations that would be detrimental to

the person. Gergen et al. (1996) suggest that the following questions may be useful

in determining the efcacy of a particular diagnosis. What meaning does the

diagnosis have for the person and/or their family carer? What is hoped to be achieved

by the diagnosis? Does it allow for the opening of doors and the creation of newpossibilities? Or does it perpetuate and compound the problem?

Sutcliffe & Simons (1993) suggest that:

The acquisition of a label can open gates to resources and other forms of

support that are not generally available. (p. 23)

Family carers were aware of this, but also expressed anxiety about the long-term

implications of diagnosis. One participant said that

Its like a double edged sword. One thing is do we need to label and thesecond thing is unless youve got a label you cant access the Welfare

Stateeducation, housing or whatever will meet your needs.

For example, parents of a 3-year-old boy actively sought a diagnosis of autism for

their sons behaviour and symptoms. The meaning of the diagnosis of autism for this

family framed their sons problem as being outside of their control or inuence. It

legitimated the parents position that here was a child who was almost impossible to

control. From their point of view, it opened up doors to educational and support

resources that were not, hitherto, available to them. The negative effects were thatthe diagnosis perpetuated the parents lack of condence in their own abilities to deal

with their sons behaviour and maintained the situation as being outwith their

control. Involving all stakeholders in the process of diagnosis means sharing these

deliberations with individuals and family members.

Certain diagnostic labels can be instrumental in the exclusion of some people

with learning difculties from services and sources of support. For example, a

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woman with learning difculties and her parents had been preparing for her to live

more independently in the community. She had been spending weekends and

holidays in her prospective home over a period of a year and the plans seemed to be

progressing. However, a recent diagnosis of early onset of Alzheimers disease has

resulted in her being refused a place in the community housing scheme. Her parentsare currently resisting the diagnosis and seeking a second opinion.

The notion of dual diagnosis seem to be particularly problematic. In a

discussion paper about the services for people who have been given a diagnosis of

learning difculties and mental illness, the following comment is made

People with Downs syndrome (and Alzheimers disease) who are not the

clear responsibility of mental handicap services are in triple jeopardy.

They risk being passed like hot potatoes between and within services with

no service really able to meet their needs. (CCETSW, 1992 p. 25).

Many family carers are aware of the ways in which certain diagnostic labels and their

respective treatments may exclude people with learning difculties from access to

services. A care worker from a respite service told us about a young man with

learning difculties who had been given a diagnosis of epilepsy:

we were basically unaware that he had rectal diazepam. The carers

hadnt mentioned it. I think it was due to the fact that they were scared

theyd be refused a service. I think theyd expect us to say we are notcaring for this guy, hes too much of a problem. So they were withholding

the truth to access a service.

Diagnostic labels, whether they apply to mental, physical or intellectual impairment,

are not only descriptive, but also constitutive of peoples lives. That is, they bring

forth pathology, create problem saturated identities, and construct careers as

patients and cases. Lackmund (1998), writing about the diagnosis of physical

conditions argues:

As constructionist perspectives in the social studies of science suggest,

diagnoses are not merely neutral means for the transmission of knowledge.

Instead, they are actively involved in the very production of the phenomena

they represent. (p. 780)

For example, a man whose diagnosis was changed from learning difculties to

autism when he was in his early twenties, found that he and his family carer were

excluded from sources of support they had been receiving from the learning

disabilities team. The family carer commented:

As long as he was a person with learning difculties there wasnt a problem,

from their point of view somebody who was not a problem to the system

becomes a problem because he has been classied.

The diagnosis of autism affected the way in which a host of other professionals now

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perceived Malcolm. For example, his GP seemed to lose condence in his ability to

treat Malcolm:

When he was diagnosed autistic, all of a sudden when we were asking (the

GP) for help for medication it was Oh well, who do I get in contact with

because I dont know a lot about autism? For years he had treated him fora learning difculty; because it was autism, it was worse.

The learning difculties team decided that they did not have the expertise to

support someone with autism, although they had been doing so for many years when

he had been carrying the label of learning difculties. The individual and his family

were referred to the mental health team who also lacked the resources to support

someone with a diagnosis of autism.

A report commissioned by the Central Council for Training in Social Work

(CCETSW, 1992) on working with people who have learning difculties a andmental illness argues that:

Services may be primarily geared to needs arising from either their learning

difculties or their mental illness but not comprehensively to both. They

may fall between the boundaries of services and the ways in which these

services are organised and orientated may not help. (p. 4)

In this particular situation, the individual and his family were decidedly worse off as

a direct result of receiving a diagnosis. The new diagnosis had widespread repercus-

sions on the family. The new worker from the mental health team felt out of his

depth with Malcolm and became quite traumatised by Malcolms behaviour. The

family carer explained:

he was very distressed at this kind of behaviour but it was nothing I

could not cope with. (the worker) was so freaked out and stressed by what

he had seen that he had to speak to another member of staff.

The failure of the social services department to provide appropriate resources,

combined with the lack of experience of the new worker, created the ingredients forthe crisis that was to follow. The worker could not relate to Malcolm, and he

became more unsettled and aggressive as a result of the workers efforts. This was

then viewed as evidence of Malcolms dangerousness, despite the fact that the family

carer demonstrated her ability to cope with, and contain the situation.

Unknown to the family carer, a case conference was held to discuss the situation

and several days later, Malcolm was sectioned under the Mental Health Act and

detained in hospital without the agreement of the family carer. Despite the fact that

the new diagnosis caused problems for the professionals as well as the person and his

family, it is interesting to note that at no time was the diagnosis ever reconsidered

or seen as problematic. Once the diagnosis had been made, it became an unques-

tionable reality.

Collins et al. (1998) put forward the view that:

there exists forms of knowledge which provide techniques for making

certain forms of personhood knowable and calculable; the truths which are

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gleaned from such calculations in turn allow for the administration of individuals (p.

8).

Terms such as autism, depression and challenging behaviour have sub-

stantial effects in narrowing the explanation to the level of the individual,

stigmatising and obscuring the contribution of other factors (Gergen et al.,

1996, (p. 1). In addition, viewing Malcolms behaviour as symptoms of

mental illness allowed professionals to justify the use of physical and

chemical restraints. Malcolms family carer told us about the following

conversation she had when Malcolm was sectioned at the family home:

Ill never forget what the GP did. I asked the question how are you going

to manage if Malcolm kicks off (becomes aggressive)? She could not give

me the words she held her bag up like a status symbol, you know, I am

the doctor.

Social constructionist ideas offer a way of thinking about diagnosis that chal-

lenges the so called facts and truths that underpin and support it. If diagnosis is

regarded as a hypothesis that is neither true nor false, but more or less useful, then

consideration could be given to the efcacy of specic diagnoses in terms of the

opportunities they create or the possibilities they limit. Furthermore, viewing diag-

nosis as tentative or one of many possibilities affords those who are the recipients of

diagnosis the choice to accept or reject it.Several authors have pointed out the inadequacies of the term learning

difculty to represent the socially constructed nature of the experience of those so

described (Walmsley, 1994). Brechin (1999) argues that, by virtue of its emphasis

on the person, the term is the equivalent of the notion of physical impairment used

to make a distinction between physical impairment and disablement (p. 1). Oliver

& Barnes (1998) state that the political tactics that disabled people themselves have

used include the personal and public afrmation of a disabled identity (p. 60),

which is a similar position to that adopted by the People First movement.

However, the costs and benets of accepting a disabled identity may welldiffer between physically disabled people and people with learning difculties

(as well as between individuals within both groups). Physically disabled people

have successfully fought the colonisers of disability (e.g. medical and allied profes-

sions) for the right to dene disability in their terms. The ght against the colonisers

of learning difculty is of a different order and is a ght against the denial of

humanity itself, hence this groups insistence on being perceived as people rst.

Liggett (cited in Oliver & Barnes, 1998) argues that the shifting social practices,

which constitute disability, should be investigated and evaluated in order to ascer-tain how such disciplinary power leads to the subjectication of the individual. This

paper asserts that diagnosis is one such practice that constitutes identity and that

people should be free to accept or reject it. This is not to suggest a denial of

disability or difference, rather it is a recognition that disabled identities for people

with learning difculties remain largely embodied and within the denitional

control of professionals.

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Conclusions

Diagnostic procedures and practices have substantial effects upon the lives of people

with learning difculties and their families. Diagnosis is usually perceived as the

exclusive territory of professionals. Based on a system of professional knowledge and

expertise, it is a form of analysis that is used to classify people according to an agreedset of criteria. The medical model of learning difculty is supported by the impera-

tive of science which, according to Boyle (1997), encourages professionals to neglect

contentthe study of the diversity and difference of individualsin preference for

form

the study of formof general features common to a groupis seen as

more scientic the goal of science is to discover universal laws applicable

across people, time and place. (p. 12)

The dominant discourse of medical science is rmly embedded in our culture and

society to the extent that difference or diversity is likely to be perceived by the

general public as illness or deviance. A common response is to seek professional

advice and expertise to make sense of what is likely to be regarded as a problem.

Many family carers in our research sought a diagnosis for their sons or daughters in

the belief that it would lead to an improved life style and increased social support.

A strongly held belief in our society seems to be that diagnosis is benign and

generally benecial. Whilst this may be the case for some illnesses or conditions,many participants in our research were substantially worse off as a direct result of

receiving a diagnosis.

The initial classication or diagnosis of learning difculty is an over-arching

diagnosis which shapes identities and excludes people from mainstream society.

Membership of this devalued group has the potential to bring forth prejudicial and

discriminatory attitudes in some professionals which may lead to the disrespectful or

dehumanising treatment of individuals who are seeking support for their general

health needs. For example, the label often subsumes other health issues which may

be regarded as distinct in others. Furthermore, diagnostic systems may exclude

people with learning difculties because of their reliance on the written or spoken

word or it may prevent access to certain treatments, such as transplant or dialysis,

by virtue of acquiring the learning difculty label. In addition, the label may lead

professionals to look for signs and symptoms of other conditions such as mental

illness and Alzheimers disease, often resulting in a dual diagnosis and multiple

oppression.

McGoldrick (1994) puts forward the view that:

Generally speaking naming is done by those in power, which means that

the issues of those not in the dominant group are obscured by their lack of

power to give names to their experience (p. 135)

The voices of people with learning difculties are absent from the mainly pro-

fessional deliberations about the diagnosis of their conditions and syndromes.

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Their opinions and views are rarely sought, or given any credence. The opinions and

explanations of family carers are more likely to be heard but usually in the service

of providing evidence to support a formal diagnosis:

A good social history from someone who knows them well is crucial for an

accurate diagnosis. (CCETSW, 1992, p. 26.)

Informal theories or explanations that are not supported by formal scientic

knowledge tend to be dismissed by professionals as naive:

The people who are usually rst to notice signs and symptoms are immedi-

ate carers but these individuals do not usually have a high level of

knowledge about psycho pathology and the signicance of symptoms.

(Moss et al., 1998, p. 174.

)

Professional diagnosis can be described as thin description because it is a class of

knowledge that is immodest in its claimsglobal, universal and experience distant

(White, 1997). It excludes both the interpretations of those being diagnosed, and the

systems of understanding and practices of negotiation that make it possible for

stakeholders to arrive at shared meanings (White, 1997, p. 15). Conversely, thick

description incorporates the explanations and interpretations of individuals and

their family carers in order to arrive at shared meanings.

Working in partnership with people with learning difculties in relation todiagnosis requires professionals to relinquish power by resisting the temptations of

certainty associated with diagnostic practices. One result of unchecked power-

certainty is loss of alternatives or the subordination of experience to expertise

(Amundson et al., 1993, p. 112). Professionals have come to believe their own

rhetoric about the truth status of their diagnoses. Reecting upon the part played by

their preferences to view phenomena through certain theoretical, ideological and

political lenses may help make explicit the hidden assumptions and prejudices in the

process of diagnosis. Friedman & Combes (1996) suggest that professional theories

and models should be evaluated in the following terms:

Does this model/theory/practice invite people to see themselves or the

therapist as expert on themselves? Does it require the person to enter

the therapists expert knowledge or does it require the therapist to

enter the world of the client? (p. 278)

Professionals need to adopt an ethical framework in which the safety of a diagnosis

would then be measured, not in terms of how the symptoms of individuals

t thediagnostic criteria, but in terms of its value in opening doors and creating opportu-

nities for the person concerned. Furthermore, professionals need to respect and

value the expertise of people with learning difculties and offer support for their

preferred ways of understanding and coping. This will require professionals to

challenge and resist diagnostic practices and outcomes that will restrict the opportu-

nities and the potential of people with learning difculties.

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