Chapter 2

Definitions and Models of Impairment and Disability

2.1

Introduction

To understand attitudes toward disabled people, it is important to be clear as to what is meant by the word disabled and its distinction from the term impairment, for any discussion in relation to disability will be sensitive to the definition used (Howard, 2003: p !" # $reat deal of debate has ta%en place since the &'(0)s over the meanin$ of these terms, for, as *lney and +im (200&" reco$nise, disability itself is a slippery category, with ,a-e%al, Harries, ,reman and .oodfield (200!" ar$uin$ There is no single, accepted definition of what disability means (p !" This has led in part to the wide ran$e of estimates in relation to the number of disabled adults in the /nited +in$dom from 0 1 million to && million (,a-e%al et al, 200!: p 2" This chapter will therefore discuss the two predominant models of disability (the medical2individual and social model" before reviewin$ the emer$in$ post3 modern approach to disability and impairment

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2.2

Medical / Individual and Social Models of Disability

The first section of this chapter will discuss the %ey issues relatin$ to the two principal models of disability4 the 5medical) or 5individual) model and the 5social) model of disability 6lewellyn and Ho$an (2000", with reference to models of disability, say that:

a model represents a particular type of theory, namely structural, which seeks to explain phenomena by reference to an abstract system and mechanism. odels of disability are not synonymous with theory as their usage does not in!ol!e data collection, but they may ha!e some usage as generators of hypotheses. "t is important to remember that models may help to generate an explanation in some way, but they do not themsel!es constitute an explanation. (6lewellyn and Ho$an, 2000"

The individual or medical model of disability tends to re$ard disability as a personal tra$edy that has befallen the individual and therefore a 5cure) is sou$ht (*liver, &''04 *liver, &''1b" This places the individual with an impairment into a 5sic% role) whereby others may ma%e decisions about the 7uality of that person)s life (8feiffer, &''0"

.ithin the /nited +in$dom the le$al definition of disability under the 9isability 9iscrimination #ct (&'':" is:

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a person has a disability for the purposes of the #ct if he has a physical or mental impairment which has a substantial and long$term ad!erse effect on his ability to carry out normal day$to day acti!ities (9oyle, &''1"

The meanin$ of terms such as 5normal), 5adverse), 5substantial) and so on are discussed elsewhere (see 9oyle, &''1" However, what is important in relation to this research is this definition ta%es an individual or medical standpoint, viewin$ the functional limitations of the individual as the determinin$ factor as to whether the person is disabled or not

8erhaps one of the most widely accepted definitional schemas that ta%es an individual approach is the .orld Health *r$anisation ;lassification of <mpairment, 9isability and Handicap (<;<9H", developed by .ood (&'00" This states:

<mpairment% "n the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function.

9isability% "n the context of health experience, a disability is any restriction or lack &resulting from an impairment' of ability to perform an acti!ity in the manner or within the range considered normal for a human being.

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Handicap% "n the context of health experience, a handicap is a disad!antage for a gi!en indi!idual, resulting from an impairment or a disability, that limits or pre!ents the fulfilment of a role that is normal &depending on the age, sex, social and cultural factors' for that indi!idual. (.ood, &'00"

*liver (&''0" criticises the .H* classification of <mpairment, 9isability and Handicap, in that for the individual to fulfil their role as a 5normal) member of society, the person with a disability is e=pected to chan$e, rather than the environment Thus, *liver su$$ests, the medical approach to disability is perpetuated throu$h these definitions of impairment, disability and handicap, in that the individual is e=pected to be 5cured) throu$h some form of intervention

<n li$ht of criticisms toward the <;<9H the .orld Health *r$anisation insti$ated the development of the <;<9H32, which later became %now as the "nternational (lassification of )unctioning (<;>" (.orld Health *r$anisation, 200&" The <;<9H32 (<nternational ;lassification of >unctionin$, 9isability and Health" has been based on an attempt to inte$rate both the social and medical models of disability (,arnes, 20004 ,arnes and ?ercer, 200!4 .orld Health *r$anisation, 2000: p 23" <;<9H32 provides a:

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 multi$perspecti!e approach to the classification of functioning and disability as an interacti!e and e!olutionary process. (.orld Health *r$anisation, 2000: p 2&"

<n summary, /stun, ;hatter-i, ,ic%enbach, Trotter << and @a=ena (200&" describe the <;<9H32 as follows:

#ll le!els of disability occur with a health condition and within the context defined by en!ironmental factors and personal characteristics &age, sex, le!el of education, life history and so on'. The three dimensions of disability are not concei!ed as links in a causal chain, but as alternati!e, but conceptually distinct, perspecti!es on the disablement process. *ne perspecti!e is at the le!el of body or body part, and abnormalities of function or structure are called impairments. "f in association with a health condition, a person does not perform a range of acti!ities that others perform, this person le!el difficulty is called an activity limitation. )inally, from the perspecti!e of complete context of a persons life, characteri+ed for the most part by the physical and social en!ironment in which the person li!es, disability may be manifested as restrictions in ma,or areas of human life - for example, parenting, employment, education, social interaction and citi+enship. "n the "("./$0, these are termed participation restrictions. (/stun, ;hatter-i, ,ic%enbach, Trotter <<, and @a=ena, 200&: pp (30"

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<t is important to note, however, as ,arnes and ?ercer (200!: p 1" stress, "ts A<;>B concept of participation is underde!eloped and linked to indi!idual circumstances rather than grounded in social and political inclusion 6i%ewise, .addell and ,urton (200!" comment that the <nternational ;lassification of >unctionin$, 9isability and Health (<;>" (formally the <;<9H3 2" still often seems to assume that functioning and disability are primarily a matter of disease and impairment, with the <;> framewor% fittin$ best with a biolo$ical stereotype of severe medical conditions This has led to critics such as 8feiffer (&''0" callin$ for the abolition of the <;<9H32 as it does not conform to the minority group paradigm

<n response to the 5oppressive) nature of the medical model of disability, the social model was developed durin$ the mid3&'(0)s # revised definition of impairment and disability that was adopted by the international disability association, 9isabled 8eoples) <nternational, which states:

<mpairment is the lack of part of or all of a limb, or ha!ing a defecti!e limb, organ or mechanism of the body.

9isability is the loss or limitation of opportunities that pre!ents people who ha!e impairments from taking part in the normal life of the community on an e1ual le!el with others due to physical and social barriers (;ited in >in%elstein and >rench, &''3"

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The social model of disability, *liver (&''1a" ar$ues, does not deny the problems or barriers faced by disabled people, but places the responsibility for those problems within society, rather than with the individual Hence, the social model of disability is a brea% away from the victim3blamin$ individual2medical model, su$$estin$ that disability is a form of social oppression (see Tre$as%is, 20024 ,arnes and ?ercer, 200!, for a review of the social model of disability" in the manner of homophobia, racism, a$eism, se=ism and so on (Ceeve, 200!: p 03"

However, the social model of disability is not free from criticism ?ar%s (&'''" summarises the limitations of the social model of disability by identifyin$ that firstly it tends to i$nore the different e=periences of disability as a result of $ender, se=uality, race, culture or other distinctions, (added to this list could also be impairment" The social model of disability and the disability movement in $eneral has also faced accusations of bein$ se=ist, due to the predominant ima$e portrayed bein$ based on the ima$e of white male wheelchair users, often i$norin$ the role played by disabled women, $ay men, lesbian women and blac% people #s a conse7uence the social model of disability and the disability movement have tended to focus on structural barriers, primarily in relation to wor%, often i$norin$ other social factors such as family (*)Toole, 200!" *liver (&''1c" refutes such criticism, claimin$ that

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the /+ disability movement has done 5more than most) to address many of these issues, statin$ that the movement has been 5dominated by women)

,y focussin$ on disablin$ environments, ?ar%s (&'''" contends the emphasis of the social model is principally on physical barriers at the e=pense of other forms of barrier @he notes earlier wor%s which su$$ested this was due to the social model havin$ been created by wheelchair users, who in turn feared bein$ labelled by the non3disabled population as 5thic%) or 5stupid) if there was any association with people with learnin$ difficulties or mental health problems @econdly, ?ar%s identifies that the social model has been closely lin%ed with many of the values of a capitalist society, citin$ wor% and independence @he $oes on to note the conflict faced by many disabled people who as a result of their impairment feel they have a le$itimate ri$ht to withdraw from the labour mar%et, whilst at the same time the social modellists are demandin$ the ri$ht to wor% Thirdly, in the social model)s attempt to avoid any form of medicalisation or lin% with impairment, the disabled people)s movement re7uires an individual to positively identify themselves as a disabled person ?ar%s notes, however, that many people with impairments do not re$ard themselves as disabled, to which the social model responds by accusin$ them of havin$ a 5false consciousness)

#$ain, *liver (&''1c" offers a defence to the social model when he ar$ues:

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"t is worth remembering too that impairment related experiences are uni1ue to the indi!idual2 often people with !ery similar conditions experience them in !ery different ways. 3hat is painful or depressing for one person may be less so for another. 4eople can only talk of their own experiences of impairment. This makes any notion of a social model of impairment extremely difficult, if not impossible to concei!e. (*liver, &''1c"

The themes raised by *liver (&''1c" as a defence of the social model of disability are challen$ed by other writers who have ta%en a different perspective and are discussed below

2.3

Postmodernism and Disability

.hilst the two principal models of disability have dominated the debate durin$ the &''0)s, other writers are now ar$uin$ for impairment to be placed at the heart of this discourse This can be identified as a feminist2postmodernist approach to disability, (.endell, &''14 ;or%er and >rench, &'''4 Thomas, &'''a4 ;or%er and @ha%espeare, 20024 9avis, 20024 @ha%espeare and .atson, 2002" >eminists have noted that the individual e=perience of impairment must have a part to play in the on$oin$ debate concernin$ disability (?ulvany, 20004 Thomas, &'''a"

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>rench (&''3", whilst ac%nowled$in$ the importance of the social model and the need to present a unified front in order to brin$ about social chan$e, also su$$ests that some problems faced by disabled people cannot be solved by social manipulation Hence, >awcett (2000" contends that the adoption of an either2or approach to the debate over the individual model or the social model of disability has created an oversimplification of the comple= relationship between the individual disabled person and society @he asserts that the 5binary distinctions) with their resultant viewpoints, such as residential care (which creates dependency" versus community care (which e=ploits female carers", social model versus medical model, and so on, has led to rid$ed thin%in$ and therefore the possibility of alternative conclusions not e=plored @uch views are supported by ;or%er and @ha%espeare (2002" who ar$ue the case for postmodernism as one such alternative theoretical tool They state:

3e belie!e that existing theories of disability - both radical and mainstream are no longer ade1uate. 5oth the medical model and the social model seek to explain disability uni!ersally, and end up creating totali+ing, meta$historical narrati!es that exclude important dimensions of disabled peoples li!es and their knowledge. The global experience of disabled people is too complex to be rendered within one unitary model or set of ideas. (onsidering the range of impairments under the disability umbrella2 considering the different ways in which they impact on indi!iduals and groups o!er their lifetime2 considering the intersection of disability with other axes of ine1uality2 and considering the

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challenge which impairment issues to notions of embodiment, we belie!e it could be argued that disability is the ultimate postmodern concept. (;or%er and @ha%espeare, 2002: p &:"

;lare (&'''" in her personalised discourse on disability also supports the notion that impairment and disability cannot be conveniently separated when she states:

To neatly di!ide disability and impairment doesnt feel right.

y experience

of li!ing with (4 has been so shaped by ableism - or to use *li!ers language, my experience of impairment has been so shaped by disability - that " ha!e trouble separating the two. (;lare, &''': pp 13("

@uch a view would appear to find support from Hedlund (2000" who su$$ests that rather than seein$ the medical model as 5anti7uated) and the social model as a 5modern conceptualisation), it is useful to view disability as a phenomenon with each model havin$ different domains to describe that phenomenon Thomas (&'''a" adds to this debate by ar$uin$ there should be no difficulty in seein$ disability as a form of social oppression, whilst simultaneously ac%nowled$in$ that impairment cate$ories are culturally constructed and thus e=ist in certain times and places, (hence, chan$in$ and fluid"

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However, other writers, (*liver, &''1a", ar$ue that there is no causal relationship between impairment and disability and that any lin%a$e between the two is li%ely to wea%en the ar$ument for social chan$e #s an illustration of the split between writers on the way in which disability studies should be researched, ;or%er and >rench (&'''" cite ,arnes, who leaves no doubt in the readers mind as to his opinion of the feminist approach:

" ha!e little doubt that [Link], The 7e,ected 5ody8 will be welcomed by the true confessions brigade2 those intent on writing about themsel!es rather than engaging in serious political analysis of a society that is inherently disabling. (;ited in ;or%er and >rench, &''': p :"

.endell (&''1", ta%in$ a feminist approach to her research ar$ues that:

the distinction between the biological reality of a disability and the social construction of a disability cannot be made sharply, because the biological and the social are interacti!e in creating disability. They are interacti!e not only in that complex interactions of social factors and our bodies affect health and functioning, but also in that social arrangements can make a biological condition more or less rele!ant to almost any situation. (.endell, &''1: p 3:"

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.illiams (&''0" adds a word of caution to the debate of when researchers use their own e=periences of disability (such as .endell, &''14 ;lare, &'''4 .illey, &'''" to e=plain the interaction of the individual self in society and illness and disability .illiams (&''0" su$$ests that what can start out as, a sociological analysis becomes a 1uasi$religious or spiritual 1uest for the truth which illness is supposed to re!eal (p 2!&" .hat is re7uired, he ar$ues, is reco$nition of both the individual)s uni7ue e=periences and the unifyin$ similarities

This challen$e is to some e=tent addressed by 8riestley (&''0" who states that the debate between the individual and social models of disability is too simplistic 8riestley therefore puts forward a 5four3fold typolo$y of disability theory), which reco$nises not only the individual and social models, but also what he refers to as the 5materialist3idealist dimension) This approach ar$ues that both the individual and social models can be either materialist or idealist in emphasis, drawin$ on wor%s of ?ar= and .eber The four approaches to disability are summarised by 8riestley as:

<ndividual3?aterialist: 9isability is the physical product of biolo$y actin$ upon the functionin$ of material individuals (bodies"4 <ndividual3<dealist: 9isability is the product of voluntaristic individuals (disabled and non3disabled" en$a$ed in the creation of identities and ne$otiation of roles4

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@ocial3?aterialist: 9isability is the material product of socio3economic relations developin$ within a specific historical conte=t4 @ocial3<dealist: 9isability is the idealist product of societal development within a specific cultural conte=t (8riestley, &''0"

The %ey distinction between the individual and social models, 8riestly su$$ests, is that, disability has some real collecti!e existence in the social world beyond the existence or experience of indi!idual disabled people, based on the, collecti!e experience of discrimination and oppression. However, how 8riestley reconciles the diverse e=periences of discrimination faced by different impairment $roups is unclear >or instance, the discrimination faced by a wheelchair user tryin$ to access public transport will be very different from a person with schiDophrenia see%in$ employment, which a$ain may be very different in terms of a person who is both blac% and livin$ with schiDophrenia as opposed to a white, sin$le mother with multiple sclerosis

Thomas (&'''a" su$$ests that whilst a synthesis between the models of disability would not be possible as the philosophical, epistemolo$ical and ontolo$ical approaches ma%e them incompatible, there is a value in see%in$ a $reater interaction or even collaboration between what she refers to as 9isability @tudies and medical sociolo$y This view is challen$ed by @im, ?ilner, 6ove and 6ishman (&''0" who present a deconstruction of the medical and social models of disability, and a model they term as the 5<deolo$ical

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;onstructions of 9isability) However, this model appears to be based on a white, male vi$nette of 5normality), which may have little relevance to other $roups .illiams (&'''" believes this process has be$un throu$h the perspectives of critical realism, ar$uin$ therefore that:

.isability, , is neither the sole product of the impaired body, or a socially oppressi!e society. 7ather, it is, , an emergent property, one in!ol!ing the interplay of physiological impairment, structural enablements9constraints and socio$cultural elaboration o!er time. (.illiams, &'''"

.illiams contends that disability theorists, in 5by3passin$) the body, have implicitly assumed a 5homo$eneity of interest) within the disability movement and its supporters, which, he asserts, is far from the case He notes how the needs, wishes, desires and interests of a middle3a$ed women with chronic rheumatoid arthritis are very different from a youn$ wheelchair user followin$ a motor vehicle accident, ar$uin$ therefore that diversity and difference are rooted in real impaired bodies

?ulvany (2000" however, su$$ests that the 5lived e=perience of disability) has been incorporated into the study of mental illness throu$h the wor% of 5interpretive sociolo$ists), but has tended to label and sti$matise the individual as deviant and a victim, whilst i$norin$, the di!ersity of experience existing between people suffering from mental disorders, as a conse7uence of a$e,

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$ender, ethnicity or psychiatric dia$noses ?ulvany concludes that the ma-or challen$e facin$ the sociolo$y of mental health is how to lin% the social construction of disability with the concept of mental impairment @uch conclusions would appear to hold true for other impairment $roups too, as illustrated by the e=amples offered by .orld Health *r$anisation (2000" in their draft of the <;<9H32

2.

!ormalisation

.ithin the field of services for people with learnin$ difficulties2disabilities, normalisation principles have played an important role (@tal%er, ,aron, Ciddell and .il%inson, &'''", despite bein$ do$$ed by misconceptions (8errin and Eir-e, &'0'" Eormalisation therefore deserves some attention within the conte=t of this chapter

*ne of the founders of the normalisation principles, .olfensber$er, says:

:ormalisation implies, as much as possible, the use of culturally !alued means in order to enable, establish and9or maintain !alued social roles for people. (.olfensber$er and Tullman, &'0'"

9eeley (2002" adds:

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:ormalisation promotes the independence of people with learning disabilities as far as is possible or feasible. "t is belie!ed that this can be most successfully achie!ed through making personal and indi!idual choices about their own li!es. 5y promoting indi!idual autonomy through choice, the pre!ailing orthodoxy re1uires the professionals to pro!ide people with learning disabilities with information about the options a!ailable to them. (9eeley, 2002"

Hence, accordin$ to 9eeley, normalisation principles are $rounded in ensurin$ disabled people have access to the same opportunities as other people However, 9eeley appears to ne$lect to state that attached to ri$hts and choices are responsibilities 9espite this, some of the participants interviewed in her research (referred to as 5paternalists)" did hi$hli$ht how when a person with a learnin$ disability loo%s un%empt or behaves in an inappropriate manner in a social environment, it is often the care service provider who is called into 7uestion, rather than the individual themselves, hence, challen$in$ the notion that the person with a learnin$ disability is completely passive

The e=tent to which normalisation is about removin$ barriers as opposed to modifyin$ the individuals behaviour is commented upon briefly by Tre$as%is (2002" in her review of the social model However, ta%in$ 9eeley)s (2000" observation above further, the modification of behaviour in order to facilitate social interaction may be seen as part of the individual model of disability

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paradi$m, and therefore challen$ed as inappropriate by social modellists 8ost3 modernists may ar$ue that $reater tolerance from society towards diversity is a more acceptable way forward @chaloc% (200!" attempts to create a de$ree of syner$y between disability models ar$uin$ there is an emer$in$ disability paradi$m that has four characteristics focussin$ on4 functional limitations, personal well3bein$, individualised supports and personal competence and adaptation #lthou$h @chaloc% ac%nowled$es the importance of social programs that emphasi+e the role that e1uity and opportunities play in leading a fuller, more meaningful, and more producti!e life, (p 20:" the emphasis of his ar$ument is based on the need for the disabled person to adapt or be $iven appropriate support in order to function within society, rather than the need for society to chan$e Thus, it could be ar$ued, @chaloc%)s 5emer$in$ disability paradi$m) is an e=tension or even reiteration of the principles of normalisation and social role valorisation as purported by .olfensber$er (2000"

@ocial role valorisation (@CF" developed from normalisation principles and has three levels of 5$oals) (Cace, 200!" Cace (200!" describes the $oals thus: the primary $oal is the 5$ood thin$s in life) (i e family, friends, home, belon$in$, wor%, bein$ valued and so on"4 the 5secondary $oal) is encapsulated in the statement often used to define @CF, that it attempts to achie!e the enablement, establishment, maintenance and9or defence of !alued social roles for people4 (which is almost identical to the definition for normalisation cited above (.olfensber$er and Tullman, &'0'"" and the 5tertiary $aol) is the attempt

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to achieve the first two $oals throu$h action, from the individual throu$h to the societal level #lthou$h not without its critics (Cace, 200!", these 5$oals) are reflected in the /+ Government)s white paper 5Faluin$ 8eople) (9oH, 200&", and hence, it could be ar$ued, hi$hly influential in relation to social policy relatin$ to people with learnin$ disabilities

2."

Conclusion

The ar$ument that disability has nothin$ to do with impairment (*liver, &''1a", seems to be at best a political stand3point to help create the illusion of complete unity within the disability movement, thus $ivin$ $reater stren$th to the critical disability ri$hts campai$n >in%elstein (&''3" ar$ues that despite disabled people not wishin$ to be labelled as such, this is an outcome of the administration of services to disabled people which tends to be medicalised in approach, and therefore inadvertently creatin$ an homo$enous $roup ,oth authors ar$ue, however, that disability and impairment are separate entities and any lin%a$e is li%ely to wea%en the disability movement

>awcett (2000" however, views >in%elstein)s and *liver)s 5unity) ar$uments with a de$ree of scepticism, drawin$ on feminist discourse around $ender, which su$$ests that biolo$ical issues are at best mar$inal with respect to social processes The ar$ument that by incorporatin$ impairment into the social model of disability and thus wea%enin$ the disability movement, should be

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viewed as 5misplaced) (>awcett, 2000: p !:" This view finds support from the .orld Health *r$anisation (200&", whose revised classification (<;>", ma%es clear the lin%a$e between the person with an impairment and their interaction with the social environment <t is therefore su$$ested that whilst acceptin$ the $uidin$ principle of the social model of disability that disability is a form of social oppression rather than a functional limitation, there is a need for $reater reco$nition of the role impairment plays in the creation of the social oppression faced by disabled people

The remainin$ chapters of this thesis will reco$nise the distinction between impairment and disability from a social model perspective, ac%nowled$in$ these two %ey terms are not interchan$eable, but also see%in$ to identify how impairment, and attitudes towards impairment, are directly lin%ed to social oppression

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