Disability assumptions, concepts and theory: reply to TomKoch

Gary L. Albrecht*, Patrick J. Devlieger

Health Policy and Administration, School of Public Health, University of Illinois at Chicago, Chicago, IL 60612-7529, USA

Tom Koch raises pertinent questions about our

article, ``The disability paradox: high quality of life

against all odds'' and disagrees with our assumptions,

argument and conclusions on logical and personal

grounds. His commentary highlights di�erences in phi-

losophical and behavioral science approaches to

addressing a question and points to key issues in the

development of disability studies as an emerging disci-

pline. We will consider the main points that he has

posed.

We acknowledge that the investigators' de®nition of

a research or social policy question is shaped by their

disciplinary framework as well as professional values.

We are social scientists operating from a grounded the-

ory theoretical framework, inductively considering the

everyday, personal experience of disabled persons,

their construction of meaning and development of suc-

cessful and unsuccessful life strategies. We are inter-

ested in the interaction of disabled persons with others

and the use of theory and evidence to construct and

test an argument of how they manage their disability.

Our research question: why do many people with

serious and persistent disabilities report that they ex-

perience a good or excellent quality of life when to

most external observers these individuals seem to live

an undesirable daily existence? is grounded in theory

and data. Both those with and without disability at

di�erent times and in di�erent contexts expressed that

this was a real question that they had posed to them-

selves and/or had been posed to them by others. They

said that this question pointed to a seeming contradic-

tion and important considerations in their lives.

By de®nition, a paradox is an apparent contradic-

tion but may not necessarily be a real one. We argue

and our data con®rm that this is true of the relation-

ship between disability and quality of life. Many

people do report that they have chronic and persistent

disabilities but also experience a high quality of life

and recognize the apparent paradox between their con-

dition and their experience. This does not necessarily

imply, as Koch suggests, that one or more of the state-

ments upon which the paradox is based are ``badly sta-

ted or incorrect''. The data and people with disabilities

speak for themselves.

In an attempt to logically dismiss the disability para-

dox, Koch ignores the evidence reported by disabled

people and the qualitative epistemological approach to

research (Peshkin, 1993). While logical arguments have

their place, they must be considered in conjunction

with evidence. There are truth tests in research. Truth

concerns the correspondence between logic, theory and

evidence. Evidence cannot be easily dismissed solely

due to an apparent logical problem.

More importantly, we disagree with the assumptions

underlying Koch's attack of our argument. Koch

claims that our argument is built on the ``self-evident''

and `incontrovertible fact'' that ``there exist persons

whose physical and/or mental states di�er negatively

from the norm''. This statement does not represent our

assumptions and theoretical position which are based

on a social model of disability. Koch is arguing from

an older, medical model position and does not take

into account disability theorists who work within the

social model of disability. They argue that disability

can be perceived as a neutral fact of life and not

Social Science & Medicine 50 (2000) 761±762

0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved.

PII: S0277-9536(99 )00386-X

www.elsevier.com/locate/socscimed

* Corresponding author. Tel.: +1-312-996-5765.

E-mail address: garya@uic.edu (G.L. Albrecht).

necessarily as some negative, diminished or devaluedstate. In this regard, disability activists contend that

research in¯uenced by the medical model on copingand accommodation is clearly ¯awed and misrepresentsthe experience of many disabled people because it is

based on the assumption that disability is a problemthat requires ®xing (Shakespeare, 1998).Koch raises another fundamental issue in disability

research when he asserts that disability as we use theconcept is `` . . .meaningless. There is no degree, no pre-cision to the class they construct . . . . What does it mat-

ter? We're all . . . disabled.'' This approach, whileuseful for some purposes, ignores the subjectively ex-perienced reality of disabled persons. Who is the betterjudge of disability and its consequences; the expert

who observes from the outside or the person who liveswith the condition? This dilemma exempli®es a basicepistemological question: how do we best know what

we know? The answer in disability research is not tobe exclusive of other positions but to consider di�erentways of knowing. Like gender, race, age and ethnicity,

disability can be de®ned as a social and cultural rea-lity; it can and has been de®ned as a construct by pro-fessionals, disabled people, governments and society at

large. These meanings and their consequences maychange from one group to another, from one societyto another and from one historical period to another.These di�erent de®nitions and views of disability help

us to reach a more complete understanding of thephenomenon. This discussion also poses a related ques-tion: who can best do research on disability; the pro-

fessionals, policy makers or disabled persons? Mustone have a disability to be a credible disabilityresearcher (see Cassuto, 1999)? These questions suggest

important epistemological issues. Our position is thatin an emergent ®eld, it is important to search out andincorporate divergent approaches to the problem toidentify the issues and positions and increase under-

standing.Koch ®nally takes exception to our research because

he thinks that it can be used to argue for diminished

support of disabled people. We disagree with Koch'sinterpretation. In fact, we could argue that our

research suggests the need to increase support for dis-abled people and better target it to those areas thatwill help them improve their quality of life. Be that as

it may, researchers cannot often control how theirwork will be interpreted and used. Ultimately, research®ndings when used to argue for social policy have to

stand up to truth and utility tests, political debates andpublic scrutiny. While not a perfect process, we believethat open debate in a democratic society best serves

the public and disabled people.In sum, we believe that our respondents did identify

and recognize a disability paradox, that they o�eredimportant insights into their quality of life and o�ered

support for a balance theory where their quality of lifeis contingent on their achieving a equilibrium betweenbody, mind and spirit. This dialogue, however, o�ers

some important lessons. Disability studies is an emer-ging, interdisciplinary ®eld implying the need for apublic forum where stakeholders can talk with and lis-

ten to others. Di�erent disciplinary, theoretical, meth-odological and experiential approaches will yielddi�erent results. The task for researchers is to generate

the necessary concepts, assumptions, theory and evi-dence to make discourse possible. In this way the ®eldwill be advanced. We are encouraged by the discoursebecause argument and clari®cation of issues, assump-

tions and concepts help to move the ®eld forward andmake it more mature.

References

Cassuto, L., 1999. Whose ®eld is it, anyway? Disability studies

in the academy. The Chronicle of Higher Education,

March 19.

Peshkin, A., 1993. The goodness of qualitative research.

Educational Researcher March, 1993, pp. 23±29.

Shakespeare, T. (Ed.), 1998. The Disability Reader: Social

Science Perspectives. Cassell, London and New York.

G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 50 (2000) 761±762762