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In response to several requests, I have included my 1998 article
attacking the ICIDH in the attachment.....david Pfeiffer
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David Pfeiffer, Ph.D.
Resident Scholar
Center on Disability Studies
University of Hawaii at Manoa
[log in to unmask]
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Center on Disability Studies....maximizing individual
potential by encouraging independence, self-determination,
and full participation in the community.
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Published in Disability & Society, 13(4, September 1998): 503-23.
The ICIDH and the Need for Its Revision
David Pfeiffer
Center on Disability Studies
University of Hawaii at Manoa
Honolulu, Hawaii 96815 USA
Acknowledgements
This work was supported in part by Suffolk University and in
part by a grant from the National Institute on Disability and
Rehabilitation Research (H133G20108-94). The views expressed are
those of the author and not necessarily of the funding agencies.
Abstract
The International Classification of Impairments,
Disabilities, and Handicaps (ICIDH) published and used by the
World Health Organization is currently undergoing a revision.
Its conceptual basis is the medical model which leads to the
medicalization of disability. From this point it is a short step
to Eugenics and a class based evaluation of people with
disabilities using the concept of "normal." People with
disabilities are found to be lacking and a burden. The language
and the logic of the ICIDH are faulty. It is replete with
biased, handicapist language. In its present form and even in
its proposed revised form (ICIDH-2) it is a threat to the
disability community world wide.
The ICIDH and the Need for Its Revision
The purpose of this article is to review the history and the
nature of the International Classification of Impairments,
Disabilities, and Handicaps (ICIDH), to present criticisms of it
with illustrations, and to call for its revision. The original
document (Pfeiffer, 1994) on which this paper is based circulated
within the World Health Organization (WHO) and among the US,
Canadian, and other personnel who are engaged in the revision of
the ICIDH. As will be shown, unless these revisions are carried
out the ICIDH is a threat to the communities of people with
disabilities around the world.
The ICIDH is an impressive document. It is obviously the
result of a considerable amount of hard work by dedicated and
competent individuals. (Thuriaux, 1995) Its original purpose was
to better the lives of people with disabilities. However, as it
reads today it needs revision because it embodies the language
and the perspectives of twenty years ago when it was created. As
Kirchner (1996) points out so well, we must not use inappropriate
measures just because they are there. They will produce false
policy implications.
Even though work was done on the paradigm and the language
of the ICIDH (Chamie, 1990; Albrecht, 1992; Whiteneck et al.,
1992; Heerkens, Brandsma, & van Ravensberg, 1993; Bickenbach &
Gray, 1996), its language in the late 1990s remains the same as
that in 1975. If WHO wishes the support and acceptance of the
world wide disability community for the ICIDH, then changes must
be carried out in its language and its paradigm.
The Document
The ICIDH is a classification scheme created by and used by
the WHO. Following the success of the International
Classification of Diseases (ICD) a classification of the
consequences of disease was proposed in the early 1970s. By 1975
ICIDH was essentially in its present form, but existed only in
internal WHO documents. Philip Wood, a British physician, was
requested by the WHO to take the work done up to that point and
produce a classification system. In 1980 the WHO published the
result, the ICIDH, in book form for use and study. (Wood, 1980)
It was reprinted in 1985 and 1989. In 1993 it was again
reprinted, but this time with an additional forward which
discusses its history. It has been translated into 16 languages.
The ICIDH defines impairment as "any loss or abnormality of
psychological, physiological, or anatomical structure or
function." (Wood, 1980: 47) This definition of impairment is
intended to include both a disease and a disorder. A disability
is defined as "any restriction or lack (resulting from an
impairment) of ability to perform an activity in the manner or
within the range considered normal for a human being." (Wood,
1980: 143; Brandsma, Lakerveld-Heyl, van Ravensberg, & Heerkens,
1995) A handicap is defined as "a disadvantage for a given
individual, resulting from an impairment or a disability, that
limits or prevents the fulfillment of a role that is normal
(depending on age, sex, and social and cultural factors) for that
individual." (Wood, 1980: 183)
It is clearly a manual for classification. For example, in
the impairment section the code for "language impairments" is 3.
A second digit can be added. For example, category 35 under
"impairments of speech" covers "impairment of voice production."
Further refinement is possible. A person who uses a "substitute
voice" is classified 35.0 while a person with "indistinct speech"
is classified 35.5. A person with "mechanical impairment of knee
and leg" is classified 71.7 while a person with " bilateral
complete paralysis of lower limbs" is classified 72.4.
Under the disabilities section, "locomotor disabilities" is
coded 4. Under it someone with a "walking disability" is coded
40. When it is possible to go further - as with different types
of "transfer disability" which is coded 46 - further digits can
be added. When the difficulty is "transfer from sitting" the
person is classified as 46.1.
Under the handicaps section, there are seven "dimensions of
handicap." The first six are "survival roles": orientation,
physical independence, mobility, occupation, social integration,
and economic self-sufficiency. The seventh dimension is labelled
"other." Under each dimension there is a definition,
characteristics are given, and then a scale is presented by which
to judge the severity of the handicap.
For example, physical independence is defined as "the
individual's ability to sustain a customarily effective
independent existence." Under characteristics is included "in
regard to aids and the assistance of others." (Wood, 1980: 188)
The scale categories begin with "Fully independent" coded as 0
and end with "Intensive-care dependence" coded as 8. There is a
code 9 for unspecified levels.
The ICIDH is intended to allow the categorization of each
person with a disability in terms of impairments, disabilities,
and handicaps encountered.
Applications
Proponents of the ICIDH say it is very useful in the fields
of health care, social service delivery, social security,
welfare, employment, survey research, health planning and policy,
education and training, and health statistics. Eight countries -
Austria, Belgium, France, Great Britain, Luxembourg, The
Netherlands, Spain, and Germany - use the ICIDH for collection of
data, epidemiological research, and the registration of people
with disabilities. The United Nations' Statistical Office
constructed an extensive Disability Statistics Data Base which
was then placed into the ICIDH categories. (Linden, 1996) It
publishes disability statistics on 55 countries. The WHO uses
the ICIDH to do cross national comparisons of disability.
According to Ficke (1996) the results of the National Health
Interview Survey Disability Supplement in the US is also being
coded into the ICIDH categories.
In Italy and Belgium it is used to determine persons'
eligibility for certain facilities, to assess the health status
of psychiatric patients, to study persons in nursing homes, and
to make decisions about furnishing durable medical equipment to
people. In the Netherlands, Germany, and Scotland it was used to
determine work capacity as a result of an impairment. The Dutch
parliament and the Quebec Office of Disabled Persons have adopted
it. Medical schools at Erasmus University (Rotterdam) and at the
University of Maastricht (also in the Netherlands) use it.
(Heerkens, Brandsma, & van Ravensberg, 1993; Keer & Placek, 1994)
The US Department of Education is funding a project using it
to code educationally relevant disabilities and another one on
the outcomes of special education in Michigan, Florida, North
Carolina, Minnesota, and Indiana. The US Department of Veterans
Affairs used it for research on aging and blindness. Blue Cross
of California uses it for payment guidelines for various
therapies. The Craig Rehabilitation Hospital in Colorado used it
as the basis for its own schema. (Keer & Placek, 1994)
Nieuwenhuijsen (1995) discusses a number of applications and uses
of the ICIDH in the US. Durkin (1996) recommends the ICIDH as a
basis for data collection so that better studies can be done.
Minaire (1992) and Lankhorst, Jelles, & van Bennekom (1995)
present other examples of the use of the ICIDH.
Not everyone argues for its adoption. Chamie (1995) points
out that although morbidity is a predictor variable related to
disability, disability is not an illness or a disease as
indicated by the ICIDH. Lacking this understanding, Chamie
continues, the World Bank mistakenly viewed disability as a
burden and calculates the years "lost" from disability. As she
writes, disability is not necessarily a burden and time as a
person with a disability is not time lost.
Dickson (1996) writes that definitions of normal behavior
are culturally dependent. The ICIDH definition of impairment, he
writes, will lead to abuse such as labelling political
dissidents, homosexuals, and even pregnancy as abnormal behavior.
In attempting to answer Dickson, Halbertsma (1966) presents
another example of the continuing use of the ICIDH in ways it
should not be used.
Oliver (1990), Abberley (1992), and Shakespeare (1995) all
point out that the ICIDH formed the basis for a 1988 survey by
the Office of Population, Census and Surveys in the United
Kingdom which found an enormous increase in the number of persons
with disabilities over a 1971 survey, from three million to six
million. The increase was due to a different definition of
disability. As the three writers argue, the ICIDH itself was no
better than the earlier definition, only different. In itself
the ICIDH does not present a more preferred conceptual basis.
Shakespeare (1995) was very concerned that the ICIDH presented
baldness, marked ugliness, pregnancy, menstruation, and
homosexuality as impairments. He is particularly critical of the
way in which the ICIDH distinguishes impairment and handicap.
The difference, he argues, is too vague and is culturally bound.
The WHO wanted the US government to adopt it, but so far it
has not. Around 1983 a number of persons in the US (primarily
associated with the American Public Health Association) began to
urge its official adoption by the Centers for Disease Control and
Prevention of the US Public Health Service (which is in the US
Department of Health and Human Services). Many persons in the
disability community opposed its use and especially its official
adoption on a number of grounds including the use of the term
handicap and because the ICIDH was said to be paternalistic and
devaluing of people with disabilities.
The Process of Revision
Although there were calls and proposals for the revision of
the ICIDH almost from its initial publication (Colvez & Robine,
1986; Wiersma, 1986; Heerkens, Brandsma, & van Ravensberg, 1993),
proponents said that many of the objections and problems were
based on misconceptions and misunderstandings (Wood, 1986, 1987,
1989; Thuriaux, 1989; Badley, 1993). The contemporary process of
revision began publically at a WHO meeting at Strasbourg in
November of 1990. A second meeting at Zoetermeer in March 1992
continued this process. (Heerkens, Brandsma, & van Ravensberg,
1993) Subsequent meetings were held in a number of countries.
The WHO maintains the overall coordination of the revision
process and oversees technical reviews. There are four
Collaborating Centers. The French center is concerned with the
impairments code. The Dutch center is concerned with the
disabilities code. The Nordic center is concerned with
crosscutting concerns and any overlap with the ICD. The North
American (US and Canada) center is concerned with the handicaps
code. (Keer & Placek, 1994)
In December of 1992 a conference was held in Washington,
D.C. with the title "Furthering the Goals of the ADA." (National
Council on Disability, 1993) It was sponsored by the National
Council on Disability and the National Institute on Disability
and Rehabilitation Research. During this conference many persons
gave presentations which touted the usefulness of the ICIDH. It
was also presented as a way to gauge the progress of the
implementation of the ADA.
A number of disability scholar/advocates were at this 1992
conference. They denounced the ICIDH and ridiculed the idea that
it could be used to judge the implementation of the ADA. It was
pointed out that there were many, many factors which will
determine, for example, the unemployment rate of people with
disabilities. It was stated that the ICIDH is part of the
problem, not part of the solution and cannot be used to judge the
implementation of the ADA. However, at the conference there was
a vocal minority of persons with disabilities who voiced support
for it. The drive for its adoption by the US government
continued and became a part of the process of revising the ICIDH.
In spite of continued opposition to the ICIDH on the part of
the community of people with disabilities, the National Center on
Health Statistics (NCHS) - part of the US Department of Health
and Human Services - contracted with Timothy Evans to develop a
training manual. In 1995 ICIDH training workshops were held at
some twenty professional meetings. (Placek & Hendershot, 1996)
The training is now a regular part of the NCHS education program
being offered in the University Visitation Program and in the
Applied Statistical Training Institute.
The NCHS also contracted with Swanson and Company to develop
software for training on the ICIDH. This software - named CODE
IDH - is available in either a Windows or a DOS based program.
(Placek & Hendershot, 1996) It is compatible with the Evans
training manual.
In August 1994 a group of disability scholar/advocates were
invited to a meeting in Atlanta at which the three North American
ICIDH Revision Task Forces discussed their progress. (Conference
on the Revision of the ICIDH..., 1994) It was sponsored by the
Center for Disease Control and Prevention, the National Institute
for Disability and Rehabilitation Research, the Shepherd Spinal
Center, and the National Center for Medical Rehabilitation
Research in the National Institutes of Health. At that meeting
opposition to the ICIDH was again set forth. Out of that meeting
came Pfeiffer (1994) which detailed the problems with the ICIDH.
Disability advocates and researchers in Quebec were active
in revising the handicap code of the ICIDH. (Bolduc &
Fougeyrollas, 1995; Dore, 1995; Fougeyrollas, 1995a & 1995b;
Fougeyrollas et al., 1997) They stressed the usability of the
general framework to explain how barriers (attitudinal, sensory,
architectural, and economic) limit the integration of people with
disabilities into society.
In September 1995 the second annual meeting of the North
American Collaborating Center was held in Quebec. (Fougeyrollas
& Strykman, 1995) The concept of handicap was thoroughly
discussed (Fougeyrollas, 1995a; Hahn, 1995) as were other parts
of the ICIDH. Ethical problems embodied in the use of the ICIDH
were also widely discussed. (Rioux, 1995)
In November 1995 the WHO held a meeting in Paris during
which a number of decisions were made. It was agreed that it
would be useful to include environmental factors into the coding
scheme. Field trials of the revised ICIDH (usually named ICIDH-
2) would be held and would include a wider range of cultures as
well as attention to differences between age groups.
In January 1996 a meeting was held at St. Louis in the US
focusing on environmental factors and using social participation
in place of handicap. The International Task Force on Mental
Health, and Behavioral, Cognitive, and Developmental Aspects met
in late February 1996. In March 1996 a meeting was held in
Strasbourg during which representatives of organizations of
people with disabilities pressed for revision. (West, 1996) In
May 1996 WHO held a final revision meeting in Geneva to produce
ICIDH-2.
According to Placek and Sweeney (1997) there is now a web
page on the ICIDH: http://www.who.ch/icidh. In addition there
are collaborating centers in Italy, Japan, Sweden, Arabic
countries, India, Russia, China, and Nigeria. A new tentative
name for the ICIDH is the International Classification of
Impairments, Activities, and Participation: A Manual for
Dimensions of Disablement and Health. The persons doing the
revision are trying to avoid using the term disability. The
North American Collaborating Center for ICIDH revision will meet
in Ottawa, Canada, on October 30-31, 1997, followed by A
Symposium on ICIDH - New Directions in Disablement Classification
on November 1. (Placek and Sweeney, 1997) The symposium will be
sponsored by the Canadian Institute for Health Information.
Even though there appears to be a commitment to revise the
ICIDH, the present version is now being used and it is having an
impact. The new version will not be adopted until 1999 at the
earliest. To understand why the ICIDH is not suitable and needs
considerable modification we need to examine the document itself.
The Need for Revision
The argument presented below for the extensive revision of
the ICIDH has six parts: (1) a brief statement of the difficulty
with the paradigm which underlies the ICIDH; (2) a discussion of
the medicalization of disability and why it is a problem; (3) the
language in the ICIDH which implies Eugenics will then be cited;
(4) next will be discussed the question of what is normal with
examples of the language in the ICIDH which presumes a type of
normality; (5) several problems of logic contained in the ICIDH
will be presented; and (6) examples of the handicapist language
which are repugnant will be given. Many of the citations and
quotations from the ICIDH could appear in more than place, but
they are cited just once.
1. The Paradigm of the ICIDH
The paradigm which underlies the ICIDH incorporates the sick
role put forth by Talcott Parsons. A person in the sick role
must follow the orders of the physician and other health
professionals in order to get well. During this time the sick
person is excused from all social obligations. (Parsons, 1951)
Not stated by Parsons is that the sick person also gives up
social rights.
However, disability is not sickness. The author of this
article became disabled from a disease, polio. He no longer has
that disease and is not sick. Some persons with disabilities
have chronic conditions, but for a half to three quarters of the
disability community there is no present sickness which disables
them. The medical model which embodies the sick role is not the
proper paradigm with which to understand disability.
The ICIDH mentions the sick role explicitly: "...the sick
person is unable to sustain his accustomed social role and cannot
maintain his customary relationships with others." (Wood, 1980:
10) It incorporates this thinking into the ICIDH by medicalizing
disability. The fact that the World Health Organization is
producing the ICIDH also imbues it with a medical identity.
2. The Medicalization of Disability
The ICIDH clearly medicalizes disability. (Halbertsma, 1995)
For example: the ICIDH is relevant "to the mitigation of
environmental and society barriers." (Wood, 1980: 2) The ICIDH
has been used for the "assessment for work." (Wood, 1980: 2) "At
the community level, it [the ICIDH] has helped in identifying the
needs of people with disabilities and handicaps, identifying
handicapping situations in the social and physical environment,
and formulating the policy decisions necessary for improvements
in everyday life, including modifications of the physical and
social environment." (Wood, 1980: 3) These problems are not
medical problems, but economic, social, and political problems.
Another example: "At the conceptual and policy levels, the
use of the ICIDH has changed the ways in which disabilities
themselves, people with disabilities, and the role of physical
and social environment in the development of handicap are
considered." (Wood, 1980: 3) Besides not citing medical
problems, the sentence is also quite presumptuous in that many
advocates do not know about the ICIDH and most of those persons
who do know of it explicitly reject the ICIDH.
"An 'umbrella' term is needed to encompass the spectrum of
experiences linked to impairment, disability, and handicap...."
(Wood, 1980: 6) The experience of impairment, disability, and
handicap is not cohesive. It is a multi-faceted political,
social, and economic phenomenon. It is not a medical phenomenon.
By equating poor health with disability as is done in the
ICIDH one can write: "...the simplest requirement of a health
care system is that some beneficial changes in the individual's
situation or status should result from contact with the system.
If no such change can be detected, then the value of a given
health care process is seriously open to question." (Wood, 1980:
8-9) Many persons with disabilities are healthy and use
wheelchairs. They will continue to be healthy and to use
wheelchairs. They will never have beneficial changes in their
status (as conceived by medical professionals) so the medical
paradigm which underlies the ICIDH is not relevant to them.
"With the exception of surveys and research enquiries, the
primary source for data of the type covered by this manual is the
records of contacts made with a care system." (Wood, 1980: 15)
What about data from persons with disabilities who do not come in
contact with a care system? Medical sociologists have shown that
half of the people with numerous symptoms never go to a
physician. The same is true of many persons with disabilities.
The medicalization of disability is grossly inappropriate.
It gives control of the lives of people with disabilities to
medical professionals (not just physicians). This control is
supported by the rest of society in numerous ways. In the US a
person with a disability must have his/her "doctors" permission
to do many things such as undertake an exercise regimen or a
letter from a "doctor" in order to obtain special plates or
placards for parking in reserved places. In many countries
medical personnel control eligibility for jobs and for income
replacement programs.
What training do medical personnel receive which enables
them to control the life of a person with a disability? In a
primitive society the shaman may be able to do so, but the
countries using the ICIDH can not be called primitive societies.
In an authoritarian society those people in authority may be able
to do so, but these countries are not authoritarian societies.
Why should a person in the medical field be the final judge
of how many hours of assistance in the home and what type of
assistance a person with a disability needs? Their input can be
valuable, but why should it be the final word? Why should
medical personnel be the judge of whether a person with a
disability can work or how much he/she can work?
The worst problem with the medicalization of disability is
that it leads to medical personnel producing judgements on the
quality of life of persons with a disability. Once a person with
a disability is saddled with the judgement of having a poor
quality of life, the person is a prime candidate for oppression
and even euthanasia, the subject of the next part.
3. Eugenics
The ICIDH, in its present form, facilitates the type of
thinking which leads us quickly to Eugenics and the development
of the master race.
"ICIDH concepts and definitions have been similarly used to
determine various types of demographic indicators of Healthy Life
Expectancy (impairment-free, disability-free, or handicap-free
life expectancy) for a range of developing and developed
countries." (Wood, 1980: 3) Note that healthy is defined in terms
of being free of an impairment, a disability, and even a handicap
although in terms of the ICIDH a handicap is imposed by society.
"Perhaps the ideal aim for the D[isability] code would be to
present a profile of the individual's functional abilities, as
determined from what disabilities were present, in such a way
that reciprocal specification of the environment allowed matching
with the individual's capabilities. . . . If this effort
succeeded, the D code could then be used as a means of screening
that could be applied not only to job placement in vocational
rehabilitation but also to school placement, rehousing the
disabled, identifying vulnerability in the elderly, and other
related purposes." (Wood, 1980: 37)
There are two problems with this passage. First, there is
no clear equivalency between a disability and functional
capacity. This problem comes up under the question of what is
normal so it shall be deferred.
The second problem is that this passage is blaming the
victim. The person with a disability is not the cause of the
handicap imposed by society. Why should the person with a
disability be the one made to conform? Even more importantly, if
the ICIDH worked as this passage intends, it is a means for
determining the quality of life for a person with a disability.
It is only a short step to say that all persons who fit certain D
categories need not live because their quality of life is so
poor. In the US the intention of this passage is contrary to the
Americans with Disabilities Act, in Australia contrary to the
Disability Discrimination Act, in New Zealand contrary to the
Human Rights Act (which was expanded to include persons with
disabilities in February 1994), in Canada contrary to their
constitution and many provincial laws, and in the United Kingdom
contrary to common law and possibly to their new law against
discrimination based upon disability.
The ICIDH is not the only place where this expression of
Eugenics appears. Patrick & Erickson (1993) masquerades Eugenics
as a social choice approach to resource allocation in the area of
health care. It is an example of how the ICIDH is really used.
If the ideas in the book, as in the ICIDH, are used as the basis
for policy decisions (and that is the intention of the authors
and the proponents of the ICIDH), then every person with a
disability in the US, Canada, Australia, New Zealand, and the
United Kingdom is in danger. And the ideas in this book, so
similar to the ICIDH, were used in the US to produce the Oregon
Plan for health resource allocation which is presently in effect.
Patrick & Erickson do not attempt to hide this potential for
danger. Instead they write: "This book advocates the use of
health and quality of life outcomes to measure the benefits of
health expenditures. We focus on health-related quality of life
as the most relevant and comprehensive outcome measure for
comparing costs. Health-related quality of life is defined as
the value assigned to the duration of life as modified by
impairments, functional states, perceptions, and social
opportunities that are influenced by disease, injury, treatment,
or policy. . . . [Health-related quality of life] addresses the
tradeoff between how long people live and how well they live."
(Patrick & Erickson, 1993: vii-viii, emphasis in the original)
It is clearly a statement that if, in the judgement of
"experts," a person does not presently have a sufficiently high
quality of life due to "impairments, functional states,
perceptions, and social opportunities" which are the outcome of
"disease, injury, treatment, or policy," then that person will
not, ought not receive "the benefits of health expenditures." A
clear statement of the ideal of Eugenics.
This threat is not an idle one. Daily decisions are made by
medical professionals on the basis of the present and future
quality of life of people using a number of different measures
compatible with the ICIDH. Nor is it a new one. Pernick (1996)
presents chilling evidence that in the 1920s medical films were
being made in the US showing the slow death of babies deemed to
be "undesirable" because of their future quality of life.
Gallagher (1995) traces the emergence of Eugenics in Nazi Germany
which led to the Holocaust.
The book by Patrick & Erickson presents a number of health
related quality of life measures compatible with the ICIDH.
(Patrick & Erickson, 1993: Appendix I) These measures are in the
form of questions about the person to be answered with different
answers providing differing scores which can be used to make
conclusions about the person's quality of life. Most of the
scales assign 1.00 to health and 0.00 to death allowing that for
some people certain health conditions are worse than death so the
rating can go below 0.00. After answering the questions the
person is assigned a score from 1.00 down to 0.00 and in some
cases less than zero. A score of 1.00 is desirable and the
person is seen as a socially useful individual having a high
quality of life. A score near 0.00 (or below it) means that the
person has very little usefulness due to a lack of "health" and a
low quality of life.
The author of this paper estimated his health related
quality of life using several measures. In the Health Utilities
Index (Mark I) the author scored 0.53 which means he is half way
between being healthy and being dead. In the Health Utilities
Index (Mark II) he scored 0.13 for the multiattribute value
function and 0.63 for the multiattribute utility function. The
0.13 score indicates that his quality of life is low, but the
0.63 score shows that he is not as bad off as one might suppose.
On the Quality of Well-Being Scale he scored 0.48, again not a
very "healthy" result. He lost most of the points on the
measures because he uses a wheelchair reflecting the "experts"
stereotypes of wheelchair users.
The ICIDH in its present form, the Health Resource
Allocation Strategy, and the related schemes are dangerous to the
disability community as are other attempts to evaluate the
quality of life of persons with disabilities. (Nussbaum & Sen,
1993; Kaplan, 1994; Romney, Brown, & Fry, 1994) They are Eugenics
in another dress and should be so named. (Brock, 1993; Evans,
1994; Goode, 1994; Parmenter, 1994) Because of this danger, the
ICIDH must be revised so as to avoid the dangerous implications
for persons with disabilities.
4. What Is Normal?
One of the major assumptions of Eugenics and of the ICIDH is
that there is a normal way to carry out an activity. There are
social norms, but those norms are only typical ways of doing
things based upon personal observations. Never was it intended
that these norms be the ideal goal toward which all must strive.
Never was it meant to presume that deviations from these norms
were bad, limiting, or in any way disabling.
The term "normal" is a relatively recent addition to the
English language. (Davis, 1995) According to The Oxford English
Dictionary (Murray, Bradley, Craigie, & Onions, 1933: volume VII,
page 207) the term norm in the sense of a model first appeared in
1821 and the term normal in the sense of typical first appeared
in 1828. The term abnormal in the sense of a departure from
nature first appeared in 1853. (Murray, Bradley, Craigie, &
Onions, 1933: volume I, page 24) But these terms did not convey a
pejorative sense.
Although no one seems to disagree that the ICIDH is based
upon norms, they do not view it as dangerous; but consider the
following passages.
"The items are not classified according to individuals or
their attributes [in the H or handicap code,] but rather
according to the circumstances in which people with disabilities
are likely to find themselves, circumstances that can be expected
to place such individuals at a disadvantage in relation to their
peers when viewed from the norms of society." (Wood, 1980: 14)
"Impairment represents deviation from some norm in the
individual's biomedical status, and definition of its
constituents is undertaken primarily by those qualified to judge
physical and mental functioning according to generally accepted
standards." (Wood, 1980: 27)
"In the context of health experience, a disability is any
restriction or lack (resulting from an impairment) of ability to
perform an activity in the manner or within the range considered
normal for a human being." (Wood, 1980: 28)
"In the context of health experience, a handicap is a
disadvantage for a given individual, resulting from an impairment
or a disability, that limits or prevents the fulfillment of a
role that is normal (depending on age, sex, and social and
cultural factors) for that individual. . . . Disadvantage accrues
as a result of his [the handicapped person] being unable to
conform to the norms of his universe." (Wood, 1980: 29)
The definition of disability in the ICIDH: "In the context
of health experience, a disability is any restriction or lack
(resulting from an impairment) of ability to perform an activity
in the manner or within the range considered normal for a human
being." (Wood, 1980: 143)
Some of the deviations from the norm are very revealing.
"Conduct out of context" includes "cultural shock (such as
immigrants), moving in different identities (e.g., transvestism
and passing, such as black passing for white), pseudo-feeble-
mindedness, and breaking taboos." (Wood, 1980: 149) This passage
clearly embodies class bias against immigrants, racial overtones
(why it is not white passing for black), and the authoritarian
implications of breaking taboos.
Under walking disability (Wood, 1980: 161) the question
arises as to when is walking a normal activity. Is it normal
when one's endurance is low? Is it normal to walk when the trip
will cover a mile in distance? And what is the normal way to
cover a mile in a downtown urban area? Most people would take a
taxi cab or drive their own car. Some people would ride a bike,
some would roller blade, some would use a wheelchair, some would
jog, some would walk. Litman (1996:2) lists the following usual
travel modes for people: walking, using a wheelchair, using a
bicycle, using a taxi, using fixed route transit like a bus,
using paratransit, being a passenger in an automobile (other than
one for hire like a taxi), driving an automobile, using a
motorcycle, and telecommuting. In a similar vein, what is the
normal way of earning a living or of making love?
Tremblay (1996) describes the experiences of Canadian World
War II veterans with spinal cord injuries. The use of a
wheelchair was not only logical, but normal. The attempt to have
them use crutches and braces, in the opinion of the veterans,
delayed successful rehabilitation for well over six months.
"Physical independence is the individual's ability to
sustain a customarily effective independent existence." (Wood,
1980: 188) Such an existence varies considerably from one
society to another and within many societies. What is normal in
one case is abnormal in another.
Under Occupation Handicap middle class values and conformist
attitudes continually are used to choose examples. (Wood, 1980:
195-97) The ICIDH is a document tied to Western, middle class
concepts of what is and what is not normal in terms of human
behavior. And behavior which is not normal is considered to be
bad and to stigmatize the individual as a person with a
disability.
5. Problems of Logic
The ICIDH contains a flaw in the logic of the relationship
of its basic categories for classification, the Impairment, the
Disability, and the Handicap codes. "The items are not
classified according to individuals or their attributes [in the
Handicap code,] but rather according to the circumstances in
which people with disabilities are likely to find themselves...."
(Wood, 1980: 14) But there is not a handicap unless you have a
person with a disability in the situation. Perhaps the H code
does not belong in the ICIDH? The work of many persons to
include environmental factors and/or social participation
reflects this concern.
The diagram illustrating the relationship between
impairment, disability, and handicap (Wood, 1980: 30) came under
criticism from many writers. (Heerkens, Brandsma, & van
Ravensberg, 1993: 14-17) The arrows in the diagram clearly imply
causality when it is not present in reality. Disability does not
give rise to handicap. Society does. The diagram is blaming the
victim (the person with a disability) when the handicap clearly
is the blame of society or at least of a non-disabled person.
Why not reverse the arrows? The handicap creates the class
of persons with disabilities. If the handicap were not present,
no one would notice the so called disability. What happens is
that a barrier segregates out certain people who are then
stigmatized with the label of disabled. To avoid blaming
society, the now labelled "person with a disability" is said to
have an impairment, another stigma. The reason for the
impairment, according to the ICIDH, is a disorder or disease.
The victim is now completely blamed. The victim is the reason
for all of the problems. Think how often over history this
process occurred.
A similar explanation for racial discrimination could look
like this:
Disorder Disability Handicap
irresponsible
skin color, features ---> low IQ ---------------> discrimination
smell
shiftless
lazy
Another similar explanation for gender discrimination could look
like this:
Disorder Disability Handicap
hysteria
anatomical features ----> mood swings ----------> discrimination
PMS
frail
giggles
And an explanation for disability discrimination could look like
this:
Disorder Disability Handicap
unable to work
mobility impairment-----> helpless -------------> discrimination
cognitive impairment dependent
sensory impairment lack of ability
lack of intelligence
Other diagrams similar to the one in the ICIDH could be
constructed for religious, ethnic, age, or any type of
discrimination. The diagram means that the consequences of a
handicap cause certain disorders to be seen as bad and evil.
A few pages later it is written: "...until categories can
be identified, one is unable to begin to count, and until
counting is possible one cannot know how big the problems are or
deploy the resources intelligently in an endeavour to control the
problems." (Wood, 1980: 35) The clear implication is that until
people with disabilities are willing to admit a so-called lack of
ability, nothing can be done to combat discrimination.
There are overwhelming problems of logic in the present form
of the ICIDH. They must be resolved.
6. Handicapist Language
Handicapist language is defined as any terminology which
devalues the person with a disability including any which conveys
a negative imputation because of the disability. (Edelman, 1974;
Bogdan & Biklen, 1977) Before citing the handicapist language in
the ICIDH there is an argument about the term handicap which must
be dealt with. The argument itself is handicapist.
One of the participants in the 1994 Atlanta conference asked
if the word handicap should be changed for the benefit of the
North Americans who are offended by it despite the loss of
international standardization that the change would mean. There
are two replies.
First, the person asking the question said that it is a
disagreement which is a temporally-bound dispute which will soon
pass into history. His argument rested upon the dispute over the
terms Negro, Black, Afro-American, and now African American. But
it was the African American community that determined which term
was the preferred one. Does not the disability community have
the same right?
Second, when the Humble Oil Company was changing its name
(before it changed to Exxon), it tried out the name Enco. It
quickly dropped the name when it discovered that its
pronunciation was the same as a scatological word in an Asian
language. The negative connotation was too much. If handicap is
a dirty word to English speaking persons with disabilities, why
not drop it? Why continue to provoke opposition to the ICIDH
with the use of a term which is not necessary?
The ICIDH apparently recognizes part of the argument just
presented: "The underlying problem [with terminology] has been
that concepts relating to disability and disadvantage have been
insufficiently explored, and, as a result, no systematized
language usage specific to those concerns has developed." (Wood,
1980: 32) Why, then, does the WHO continue to insist upon the
term handicap and other words when they are clearly perceived to
be devaluing and paternalistic?
One of the clearest examples of handicapist language appears
in the original introduction: "On the other hand, disabilities
reflect failures in accomplishments so that a gradation in
performance is to be anticipated...." (Wood, 1980: 14) A clear
example of a self-fulfilling prophecy.
In discussing the consequences of disease (Wood, 1980: 24-
25) the term "chronic illness" is used. Many persons with
disabilities have chronic conditions, but are not ill. In
referring to persons who have chronic illness and by implication
persons with disabilities, the term "sufferers" is used. (Wood,
1980: 25)
Another example: "Also relevant are psychological responses
to the presence of disease, part of so-called illness behaviour,
and sickness phenomena, the patterning of illness manifested as
behaviour by the individual in response to the expectations
others have of him when he is ill. These experiences represent
disabilities, which reflect the consequences of impairments in
terms of functional performance and activity by the individual.
Disabilities represent disturbances at the level of the person."
(Wood, 1980: 26) The sick role is used to define disability and
disability is further explained as an inability to function in a
normal way. Finally, the whole blame is placed upon the person
with a disability.
In a discussion of how a handicap can arise from the
existence of an impairment without a person having a disability,
the following is found: "A disfigurement may give rise to
interference with the normal operation of cues in social
intercourse, and it may thus constitute a very real disadvantage,
to say nothing of the embarrassment that the disfigured
individual may feel." (Wood, 1980: 30) Why would the disfigured
individual feel embarrassed? It is the other person who can not
operate "normally" in the situation. The disfigured person is
disadvantaged only, if at all, because the other person can not
function.
Another example: "...disabilities are not threshold
phenomena; they reflect failures in accomplishments...." (Wood,
1980: 38) For many persons with disabilities who have
accomplished a great deal, these words are utterly devaluing.
It is presumed that any person with a disability will also
be a person with a disadvantage. "An individual with reduced
competence in any of these dimensions of existence is, ipso
facto, disadvantaged in relation to his peers." (Wood, 1980: 38)
The six dimensions are orientation, immediate physical needs,
mobility, occupation of time, social relationships, and
socioeconomic activity. The late Nelson Rockefeller was a
billionaire, governor of the State of New York, and Vice
President of the United States. However, he had a learning
disability so that he had to be read many documents and had to
have speeches written for him. In addition he had to have
someone to clean his house, take care of his children, cook his
meals, drive his car, and do many other things for him. The same
can be said of Franklin Roosevelt although he had no trouble
reading and writing. He did, however, have a major problem with
mobility. Even though some persons may protest that Rockefeller
and Roosevelt did not do some of these things because they were
wealthy, it is not known how many either one could have done.
The point is that assuming someone is ipso facto disadvantaged
does not hold up. It is handicapist.
Throughout the ICIDH it is assumed that only people with
disabilities have problems. "In terms of disadvantage, the
consequences [of a handicap] are that an individual is unable to
sustain the roles to which he is accustomed or to attain those to
which he might otherwise aspire." (Wood, 1980: 41) But this
statement is also true of people who are not disabled.
"Personal safety disability" includes "disturbance of the
ability to avoid hazards to the integrity of the individual's
body" and "Personal safety disability in special situations"
includes "being in hazard in special situations, such as those
related to travel and transport, occupation, and recreation,
including sport." (Wood, 1980: 149) People with disabilities
have as much of a right to take risks as other people, but
(again) these passages describe people in general.
Under "Particular Skill Disabilities" listing "attitude to
rehabilitation" (Wood, 1980: 171) is offensive to the many people
with disabilities who were told by their rehabilitation counselor
that a preferred goal was not feasible, but who achieved that
goal on their own. There are many persons with disabilities who
later in life realized that their rehabilitation counsellor set
up a self-fulfilling prophecy that they would fail to achieve a
goal by denying sufficient resources to attain that goal. This
perspective is wide spread in the disability community in the US.
Having it in the ICIDH both is handicapist and leads to
opposition to the use of the ICIDH.
In discussing Handicap, negative words are continually used
which blame the victim: "departs for the norm," "failure or
inability to conform," "disadvantage," "the need for aids or
medication," and "assistance is required from other people."
(Wood, 1980: 183 & 186) The language should address the fact that
ignorance and lack of understanding on the part of other people
create the barriers (attitudinal, sensory, architectural, and
economic) which face people with disabilities. Departure from
the norm or accepting help from other people (which everyone
does) should not be described in a pejorative fashion. It is
handicapist to do so.
Under "Severe impediments to orientation" is listed the
example of "the reliance of the blind on listening or touching."
(Wood, 1980: 186) This passage is a clear example of handicapist
language because persons with visual disabilities are quite
capable of being "normal" in their orientation.
Under "Aided independence" and "Situational dependence"
people who do not use a provided aid or appliance are viewed in a
negative fashion. (Wood, 1980: 188-89) However, the person with
a disability has the right to choose whether to use the aid and
may have a good reason for not using it. Many persons who use a
manual chair are asked why they do not use a motorized
wheelchair. The answer is simple: the exercise which they
receive from pushing the chair is a major part of their daily
regimen. In addition, motorized chairs do not fold for placement
in automobiles, have batteries which lose their charge, and often
are too large to enter many places.
In the ICIDH reference is made to people "who are dependent
on a wheelchair...." (Wood, 1980: 189) Most wheelchair users
(not all) would argue that using a wheelchair liberates them from
less attractive alternatives. It is an energy conserving aid
which allows them considerable freedom of movement. The language
is handicapist.
In discussing mobility handicap three times the negative
term "confinement" is used. (Wood, 1980: 193) Although its use in
this case might not be described as handicapist by everyone, it
is certainly a term which is often found in handicapist passages.
It only serves to reinforce the handicapist language of the
ICIDH.
Conclusion
The paradigm which underlies the ICIDH leads to the
medicalization of disability which in turn allows medical
personnel to make decisions having nothing to do with medicine
such as measuring the quality of life of a person with a
disability. Determining the quality of life of people with
disabilities based upon their impairments leads to Eugenics.
People with poor quality of life first are denied resources (not
just health services) and then become the prime candidates for
euthanasia. The paradigm must be changed.
The ICIDH is based upon the concept of what is normal.
However, this normality is based upon Western, white, middle
class, male values. In addition to this cultural bias of the
ICIDH, there are several problems of logic in the ICIDH. Perhaps
the greatest of these problems is the direction of causality from
impairment all the way to handicap. To argue, as some proponents
of the ICIDH have done, that it only represents a time sequence
is inadequate. The diagram of the relationship (Wood, 1980: 30)
places the ultimate blame for the handicap upon the person
described as having a disability. It is a clear form of blaming
the victim and must be changed.
Much of the terminology in the ICIDH is handicapist language
which devalues the person with a disability. Aspects of the
phenomenon of disability are described in negative, pejorative
terms. The final effect of the ICIDH is to oppress people with
disabilities. Having been blamed and told of inadequacies, the
person with a disability internalizes the shame and the blame.
Having internalized the shame and the blame, the person with
a disability then behaves in a subservient manner. If a protest
is made, then he/she is described as not accepting "reality."
The person with a disability is "counselled" to follow the sick
role and become well. However, the person with a disability is
not sick and therefore will never become "well." He/she is stuck
forever in the dependent role and the need for the ICIDH is
clearly established because it is designed to measure the result
of disease and disability. The result is abnormality and
dependency brought on, in part, by the ICIDH.
At one point, in discussing the consequences of disease, it
appears that some of this argument for modifying the ICIDH is
found in the document itself: "In attempting to apply the
concept of disability, there is a need for caution in how the
ideas are expressed. By concentrating on activities, disability
is concerned with what happens - the practical - in a relatively
neutral way, rather than with the absolute or ideal and any
judgements that may attach thereto. To say that someone has a
disability is to preserve neutrality, nuances of interpretation
in regard to his potential still be possible. However,
statements phrased in terms of being rather than having tend to
be more categorical and disadvantageous. Thus to say that
someone is disabled, as if this were an adequate description of
that individual, is to risk being dismissive and invoking
stigma." (Wood, 1980: 28)
Although this passage is a very welcomed one, society does
not operate in the manner implied by it. If an authority figure
- like a physician - says that someone is abnormal, then that
person is viewed as inferior and is stigmatized. That is what
the ICIDH is doing in its present form. The wording and the use
of the ICIDH stigmatizes people with disabilities.
Disability is not a health question. It is a political one.
By making disability a health question or by associating it with
health problems the WHO contributes to the oppression of persons
with disabilities. It contributes to the oppression when people
with disabilities are actually the victims of class based
standards and barriers.
Disability involves discrimination and exclusion in the same
way that race, color, gender, religion, and other things produce
discrimination, exclusion, and oppression. The ICIDH stresses
pathos and dependence which invokes pity and the need for
supervision. Disability is not at all like that.
Disability is a natural part of life. Everyone will be
disabled. Perhaps a person will be disabled for only moments
before death from a massive heart attack or in an automobile
accident; but most people will spend a significant amount of time
in their life as a person with a disability. It can not be
avoided. Therefore, it is important to say that people with
disabilities have a right to be different and a right to be
treated equally with people without disabilities.
Because of the principle of equality and because the ICIDH
is here to stay, the WHO must undertake a drastic revision of the
ICIDH. Not only must the wording be clarified and modified, but
the paradigm must be changed.
At the May 1996 WHO meeting in Geneva there was an emerging
consensus that the ICIDH must be rewritten into positive
language, that the environment must somehow be considered, and
that it must not be a labelling instrument. (World Health
Organization, 1996) It was also agreed that the new draft (the
ICIDH-2) would be discussed during the remainder of 1996
(described as alpha testing) with any necessary modifications
made. During 1997 further discussions would be held and the
ICIDH-2 would be tested (the beta testing) by using it for
coding. In 1998 further discussions over revisions would be held
and then in 1999 it would be presented to the WHO Assembly for
final adoption. (Placek & Sweeney, 1996)
The ICIDH-2 was published in July 1996. The copy in the
possession of the writer of this article states that it may not
be translated, copied, or quoted without the written permission
of the WHO. It goes even further saying that it may not be
reviewed or abstracted without permission. While reviewing and
abstracting the document comes within the fair use doctrine in
the US, this writer does not wish to tangle with the WHO on minor
points.
The ICIDH-2 is a collection of descriptions of impairments,
disabilities, and participation activities which seem to cover
every part of human life. The result is that everyone in the
world can be categorized. Probably it would not happen unless a
person had an International Classification of Diseases diagnosis
connected with an impairment code from the ICIDH-2. However, it
still reflects white, male, Western, middle class values in terms
of what is described. When half of the world goes to sleep
hungry and hundreds of thousands of people face death every day,
the ICIDH-2 is pointless.
The handicapist language is gone from the ICIDH-2, but there
is little besides the descriptions. The result is that
subjectivity can be rampant. The possibility of class bias is
very real. If you are poor, then you are a misfit. If you are
rich, then you are an eccentric. There is no other way to
express it.
Some of the ICIDH is compatible with the paradigm identified
with the independent living movement (DeJong, 1983 & 1993) and
with persons with disability as a minority group (Hahn, 1985 &
1986). Although the independent living paradigm must not be used
without a critical revision (Williams, 1983; Abberley, 1987), it
is clearly more relevant to disability than is the present
medical paradigm which underlies the ICIDH. Yet it is not
sufficient, by itself, to save the ICIDH.
The minority group paradigm might also be used, but it
clearly comes from a different viewpoint and would be hard to use
with anything like the ICIDH. Indeed, the minority group
paradigm presents a motivating factor for not just rewriting the
ICIDH, but for abolishing it altogether.
The minority group paradigm states that people with
disabilities are an oppressed group in society. The only way for
people with disabilities to survive, according to the minority
group paradigm, is to throw off the yoke of oppression. However,
one of the first things that an oppressive government does before
it begins to eliminate a group of people is to classify them.
Once classified it is easy to select subgroups for elimination as
did Nazi Germany in the 1930s and 1940s. (Gallagher, 1995) The
ICIDH is one step in this direction and the ICIDH-2 is little
better. They are dangerous and must be dealt with by the
community of people with disabilities.
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