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Page 1: The illusion of paradox: commentary on Albrecht, G.L. and Devlieger, P.J. (1998). The disability paradox: high quality of life against all odds. Social Science & Medicine 48, 977–988

The illusion of paradox: commentary on Albrecht, G.L.and Devlieger, P.J. (1998). The disability paradox: high

quality of life against all odds. Social Science & Medicine48, 977±988

Tom Koch*

Department of Geography, University of British Columbia, Vancouver, BC, Canada V5T 1Z2

In a recent article, Albrecht and Devlieger (1999)describe a `disability paradox' whose exposition they

then explored through qualitative research into theself-reported life quality of `disabled' persons.Logicians argue that most if not all paradoxes can beresolved through a rigorous consideration of the

axioms that create it. If something seems paradoxical,the likelihood is that one or the other constitutiveaxiom Ð paradoxes generally are based on two state-

ments Ð is either badly stated or incorrect (Koch,1998a). That is clearly the case with the `disabilityparadox'.

Albrecht and Devlieger's argument is built upon twoincontrovertible facts. First, there exist persons whosephysical and/or mental states di�er negatively from the

norm. This is self-evident. Secondly, persons-of-di�er-ence often report a positive life quality. As Asch notes(1988), for example, in a 1994 survey of physicallydependent persons, two-thirds reported their lives as

very or somewhat satisfying (National Organization onDisability, 1994).These two disparate facts lead Albrecht and

Devlieger to assumptions whose conjunction is para-doxical. They make this leap very clearly: ``The com-mon understanding of a good quality of life implies

being in good health and experiencing subjective well-being and life satisfaction. Conversely, one can argue

that if people have disabilities they cannot be con-sidered in good health nor possess a high level of life

satisfaction.'' (Albrecht and Devlieger, 1998, p. 978).The paradox therefore exists whenever persons with

one or another diminished physical (or mental) ca-pacity report a satisfactory life quality that is assumed

to result only from a condition of normalcy. Whilerecognizing that current research ``presents a morecomplex picture'' (Albrecht and Devlieger, 1998, p.

978) of the `disabled' life, these authors quote severalexperts to support their second assumption. Thisincludes `a distinguished expert in rehabilitation' who

stated 27 years ago that ``the disabled patient has agreater problem in achieving a satisfactory quality oflife. He has lost, or possibly never had, the physical

capacity for the necessary responses to establishand maintain the relationships, interactions, and par-ticipation that health persons have'' (Kottke, 1982,p. 80).

Bare facts create assumptions that are then trans-formed into bald axioms: (a) physical normalcy equalsacceptable life quality. (b) Physical di�erences result in

diminished life quality. Ergo, an acceptable life qualitycan not exist in the face of physical di�erences.Paradox demands only that a person (a) exhibit con-

ditions that diverge negatively from the norm and (b)reports a positive life quality.This is clearly preposterous. Impoverished, homeless,

friendless and unemployed: would either author (or

any reader) assert an acceptable life quality simplybecause their physical condition was `normal'? Clearly,self-perceived life quality depends on a variety of fac-

Social Science & Medicine 50 (2000) 757±759

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* University of British Columbia (Dept. of Geography),

1984 West Mall, Vancouver, BC, Canada V5T 1Z2.

E-mail address: [email protected] (T. Koch).

Page 2: The illusion of paradox: commentary on Albrecht, G.L. and Devlieger, P.J. (1998). The disability paradox: high quality of life against all odds. Social Science & Medicine 48, 977–988

tors. In a very partial list they might include familial,

®nancial, individual, interpersonal, marital, pro-fessional, physical and social attributes. Any of thesemay a�ect an individual's self-perceived life quality. It

is rare that any single attribute independently de®neslife quality. Life is more complex than that.

The paradigmatic example of a physical distinctionthat need not diminish life quality is deafness. Onceconsidered a necessarily limiting `de®cit', one often

resulting in institutionalization, deafness is now con-sidered a di�erent but not necessarily inferior state ofbeing (Sacks, 1990). While congenital deafness means a

life world without audible stimuli, the resulting socialand perceptual reality is potentially as rich as any

other. Deafness requires a di�erent means of com-munication, sign language and lip reading rather thanaudible speech and hearing. This does not in itself cre-

ate a context of either social or interpersonal impover-ishment. The resulting life quality while by de®nitiondi�erent is not necessarily lessened.

Albrecht and Devlieger's logical fallacy is com-pounded by another common error. In constructing a

class and naming it `disabled' they create a `defaultassumption' Ð a re¯exive logical inference whose rea-lity is not assured Ð in which physical di�erence is

assumed to result in an inferior quality of life. Say `dis-ability' and the default assumption is one of life di�-culties and a diminished life quality. As `the disability

paradox' demonstrates, default assumptions impose arange of limiting assumptions upon the reader, the wri-

ter and his or her resulting research.It is for this reason that I refrain from the use of the

word `disabled' in describing people whose physical

condition di�ers from the mundane norm. As research-ers like Albrecht and Devlieger employ it, the word

(like `handicapped') is meaningless. There is no degree,no precision to the class they construct. It includes asequal (and equally disadvantaged) members those who,

like me, have moderate impairments (vision and mobi-lity) and a person who might be wholly blind, comple-tely deaf and quadriplegic. What does it matter? We're

all . . . disabled.At the very least, those who insist upon investigating

physical di�erence to the exclusion of other factorsshould do so with some recognition of the degree towhich varying degrees of physical di�erence may

require di�erent levels of individual accommodation.Those interested in a discussion of a taxonomy ofphysical di�erence will ®nd a useful review of

Nordefelt's work (1983) in a recent article by Edwards(1998). While medically more explicit, the resulting

research may be no less ¯awed than the work pre-sented by Albrecht and Devlieger, (1999), however.The assumption that physical di�erence is the sole,

critical criteria to be considered limits and devalues theresulting work. Here Albrecht and Devlieger's report

provides a useful if cautionary example. In their quali-

tative research they apparently sought out people with

a variety of physically distinguishing conditions among

the homeless, in community settings and in their

homes. Because they were solely concerned with physi-

cal di�erence, however, they did question the relation

of other pertinent factors to self-reported life quality.

Apparently excluded from consideration were: the

e�ect of a respondent's employment, education or mar-

tial status, the individual's health insurance or the

degree to which he or she received personal and reha-

bilitation counseling, for example. All and any of these

together may a�ect the manner in which a person ac-

commodates to life's changes.

The critical issue Ð how people cope with change

Ð is also unconsidered in the presentation of the `dis-

ability paradox'. A generation ago, Sacks (1982, p. 35)

called the process of accommodation, ``the least dis-

cussed, the least understood, the most mysterious of

phenomena''. An evolving and quite pertinent litera-

ture on methodologies of coping has developed in

recent years, however. It was recently applied by

researchers seeking to understand the `positive life ex-

periences' also reported `against all odds' by persons

with amyotrophic lateral sclerosis (ALS), a progressive

neurological condition (Young and McNicoll, 1998).

Successful accommodation to changes in one's

physical status Ð or the physical status of a loved one

Ð proceeds in a manner that is well de®ned and typi-

cally dependent on a set of cultural, interpersonal and

social factors. I have elsewhere argued a similar pat-

tern of change is evident whenever a change Ð physi-

cal, marital, social or spiritual Ð fundamentally alters

a person's life style and therefore life quality must be

addressed. (Koch, 1994, 1998b). When successful, an

enriched life quality irrespective of the di�erences

involved may result. That this process is at once per-

sonal, interpersonal and social is a conclusion unfortu-

nately denied to Albrecht and Devlieger by the

`paradoxical' assumptions they present.

In a time of diminished public spending on health

care it is critical that assumptions about di�erence be

carefully considered. It is a small step to argue from

Albrecht and Devlieger's position to one that will

diminish support for persons-of-di�erence because

their life quality is assumed to be de®cient. This is

clearly not their intention. It is, however, a potential

result of the assumptions they present.

It is critical that the assumptions we present re¯ect

the realities of the people whose lives we purport to

describe. If they do not, the edi®ces we construct will

neither add to our shared knowledge nor long endure.

I know others who read and dismissed but did not

publicly comment on this article. My suspicion is that

a commentary like mine requires a personal as well as

T. Koch / Social Science & Medicine 50 (2000) 757±759758

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a professional interest in the lives of us whose physicalstatus is distinguished from that of the norm.

References

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high quality of life against all odds. Social Science &

Medicine 48, 977±988.

Asch, A., 1998. Distracted by disability. Cambridge Quarterly

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Edwards, S.D., 1998. Nordenfelt's theory of disability.

Theoretical Medicine and Bioethics 19 (1), 89±100.

Koch, T., 1994. Watersheds: Crises and Renewal in Our

Everyday Lives. Lester Publishing, Toronto.

Koch, T., 1998a. The Limits of Principle: Deciding Who

Lives and What Dies. Praeger books, Westport, CT.

Koch, T., 1998b. Second Chances: Stories of Crisis and

Renewal in Everyday Life. Turnerbooks, Toronto.

Kottke, F.J., 1982. Philosophic considerations of quality of

life for the disabled. Archives of Physical Medicine and

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National Organization on Disability, 1994. NOD/Harris

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Nordefelt, L., 1983. On Disabilities and their Classi®cation.

Linkopping: University of Linkopping. Quoted in

Edwards, 1998.

Sacks, O., 1990. Seeing Voices: a Journey into the World of

the Deaf. Harper Collins, NY.

Sacks, O., 1982. Awakenings. Pan Books, London (revised

edition).

Young, J.M., McNicoll, P., 1998. Against all odds: positive

life experiences of people with advanced amyotrophic lat-

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T. Koch / Social Science & Medicine 50 (2000) 757±759 759