Harlan Lane. Ethnicity, Niepełnosprawni
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Ethics and Deafness
Ethnicity, Ethics, and the Deaf-World
Harlan Lane
Northeastern University
This article is concerned with ethical aspects of the
relations between language minorities using signed lan-
guages (called the Deaf-World) and the larger societies that
engulf them. The article aims to show that such minorities
have the properties of ethnic groups, and that an unsuitable
construction of the Deaf-World as a disability group has
led to programs of the majority that discourage Deaf
children from acquiring the language and culture of the
Deaf-World and that aim to reduce the number of Deaf
births—programs that are unethical from an ethnic group
perspective. Four reasons not to construe the Deaf-World
as a disability group are advanced: Deaf people themselves
do not believe they have a disability; the disability
construction brings with it needless medical and surgical
risks for the Deaf child; it also endangers the future of the
Deaf-World; finally, the disability construction brings bad
solutions to real problems because it is predicated on
a misunderstanding.
the members of the Deaf-World. Most of the 20
million Americans (Binnie, 1994) who are in this larger
group had conventional schooling and became deaf
after acculturation to hearing society; they communicate
primarily in English or one of the spoken minority
languages; they generally do not have Deaf spouses;
they do not identify themselves as members of the
Deaf-World or use its language, participate in its
organizations, profess its values, or behave in accord
with its mores; rather, they consider themselves
hearing people with a disability. Something similar is
true of most nations: There is a Deaf-World, a relatively
small group of visual people (Bahan, 2004; Padden &
Humphries, 1988) who use a natural visual-gestural
language and who are often confused with the larger
group who view themselves as hearing impaired and
use a spoken language in its spoken or written form. To
acknowledge this contrast, often signaled in the
scholarly literature by capital-D Deaf versus small-d
deaf, is not to deny that there is a gray area between the
two; for example, some hard-of-hearing people are
active in the American Deaf-World; others are not.
Oral deaf adults and late-deafened adults usually
consider that they have a hearing impairment and do
not self-identify as members of the Deaf-World.
This article is concerned exclusively with the
smaller group, the Deaf-World. It aims to show that the
Deaf-World qualifies as an ethnic group, and that an
unsuitable construction of the Deaf-World as a disabil-
ity group has led to programs of the majority that aim
to discourage Deaf children from participating in the
It has become widely known that there is a Deaf-World
in the United States, as in other nations, citizens whose
primary language is American Sign Language (ASL)
and who identify as members of that minority culture.
The size of the population is not known, but estimates
generally range from half a million to a million
members (Schein, 1989). The English terms deaf and
hearing impaired are commonly used to designate
a much larger and more heterogeneous group than
A version of this article will appear in L. Komesaroff and M. Jokinen,
Surgery on Deaf Children, Washington, DC: Gallaudet University Press.
All correspondence should be sent to Harlan Lane, Department of
Psychology 125 NI, Northeastern University, 360 Huntington Avenue,
Boston, MA 02115 (e-mail: Lane@neu.edu).
The Author 2005. Published by Oxford University Press. All rights reserved.
For Permissions, please email: journals.permissions@oupjournals.org
doi:10.1093/deafed/eni030
Advance Access publication on May 4, 2005
292 Journal of Deaf Studies and Deaf Education 10:3 Summer 2005
Ta b l e 1 Properties of ethnic groups: Distinct
Collective name
Norms for Behavior
Customs
In Deaf culture, there are norms for relating to the
Deaf-World: for decision making, consensus is the
rule, not individual initiative; for managing informa-
tion; for constructing discourse; for gaining status; for
managing indebtedness; and many more such rules.
Cultural rules are not honored all the time by everyone
any more than are linguistic rules. Such rules tell what
you must know as a member of a particular linguistic
and cultural group; what one actually does or says
depends on a host of intervening factors, including
other rules that have priority.
Feeling of community
Social structure
Norms for behavior
Language
Values
Art forms
Knowledge
History
Kinship
Deaf-World (programs such as oral education and
cochlear implant surgery) and that aim to reduce the
number of Deaf births, programs that are unethical
from an ethnic group perspective. In other words, this
article makes the case that our ethical standards for the
majority’s treatment of Deaf people depend, not
surprisingly, on whether our representation of the
Deaf-World is that of a disability group on the one
hand or an ethnic group on the other.
Distinct Values
The underlying values of an ethnic group can often be
inferred from cultural norms. A value that appears to
be fundamental in the Deaf-World is allegiance to the
culture, which is expressed in prizing one’s relation to
the Deaf-World, in endogamous marriage, in gaining
status by enhancing the group and acknowledging its
contributions, in the giving of culturally related names,
in consensual decision making, in defining oneself in
relation to the culture, in distributed indebtedness, in
the priority given to evidence that arises from
experience as a member of the culture, in treasuring
the language of the Deaf-World, and in promoting
among Deaf people dissemination of culturally salient
information (cf., Lane, 2004a; Mindess, 1999;
T. Smith, 1997).
The Deaf-World Is an Ethnic Group
Internal Properties
Table 1 shows the criteria that have been advanced by
social scientists for characterizing a social group as an
ethnic group.
Collective Name
The members of this group have a collective name in
their manual-visual language by which they refer to them-
selves. We refer to them by that name in adopting the
English gloss of their compound sign: the Deaf-World.
Knowledge
Feeling of Community
Deaf people have culture-specific knowledge, such as
who their leaders are (and their characteristics); the
concerns of rank-and-file members of the Deaf-World;
important events in Deaf history; how to manage trying
situations with hearing people. Knowing when and
with whom to use ASL and when to use English-
marked varieties of sign language is an important part
of being recognized as Deaf (Johnson & Erting, 1989).
Self-recognition, and recognition by others, is a central
feature of ethnicity (Barth, 1969; A. D. Smith, 1986).
Americans in the Deaf-World do indeed feel a strong
identification with that world and show great loyalty to
it. This is not surprising: The Deaf-World offers many
Deaf Americans what they could not find at home: easy
communication, a positive identity, a surrogate family.
The Deaf-World has the highest rate of endogamous
marriages of any ethnic group—an estimated 90%
(Schein, 1989).
Customs
The Deaf-World has its own ways of doing introduc-
tions and departures, of taking turns in a conversation,
Ethnicity, Ethics, and the Deaf-World 293
of speaking frankly and of speaking politely; it has its
own taboos.
it is actually possessed but because of an alleged and
felt connection. The land of dreams is far more
significant than any actual terrain’’ (A. D. Smith, 1986,
p. 34). Land that the Deaf-World in the United States
has traditionally felt an attachment to includes the
residential schools; Deaf travel is often planned
around visits to some of those schools. There is a Deaf
utopian vision of ‘‘a land of our own’’ expressed in folk
tales, novels, journalism, theater, and political dis-
cussions (Bullard, 1986; Lane, 1984; Levesque, 1994;
Van Cleve & Crouch, 1989; Winzer, 1986). Deaf-
Worlds are to be found around the globe, and when
Deaf members from two different cultures meet, they
feel a strong bond although they share no common
territory and are limited in their ability to communi-
cate with one another. In this, they are like Diaspora
groups, such as the Jews. And, like the Diaspora ethnic
minorities worldwide, prejudice and discrimination in
the host society encourage them to cultivate their
ethnicity to maintain their dignity despite social
marginalization.
Some scholars maintain that the core of ethnicity
lies in the cultural properties we have examined, so
kinship is not necessary for the Deaf-World or any
other group to qualify as an ethnic group (Barth, 1969;
Petersen, 1980; Schneider, 1972; Sollors, 2001). Others
say kinship should be taken in its social meaning as
‘‘thosetowhomweoweprimarysolidarity’’(Schneider,
1969). ‘‘Ethnie embody the sense of being a large
unique family; the members feel knit to one another
and so committed to the cultural heritage, which is the
family’s inheritance’’ (A. D. Smith, 1986, p. 49). What
is involved is a sense of tribal belonging, not necessarily
genetic and blood ties. Certainly, there is a strong sense
of solidarity in the Deaf-World; the metaphor of family
goes far in characterizing many Deaf-World norms and
practices.
What kinship is really about, other scholars contend,
is a link to the past; it is about ‘‘intergenerational
continuity’’ (Fishman, 1989). The Deaf-World does
pass its norms, knowledge, language, and values from
one generation to the next: first through socialization of
the child by Deaf adults (parent or other) and second
through peer socialization. Here, however, there is
a significant difference from other ethnic groups: For
many Deaf children, socialization into Deaf culture
Social Structure
There are numerous organizations in the American
Deaf-World: athletic, social, political, literary, re-
ligious, fraternal, and many more (Lane, Hoffmeister,
& Bahan, 1996). As with many ethnic minorities, there
are charismatic leaders who are felt to embody the
unique characteristics of the whole ethnic group
(A. D. Smith, 1986).
Language
‘‘The mother tongue is an aspect of the soul of a people.
It is their achievement par excellence. Language is the
surest way for individuals to safeguard or recover the
authenticity they inherited from their ancestors as well
as to hand it on to generations yet unborn’’ (Fishman,
1989, p. 276). Competence in ASL is a hallmark of
Deaf ethnicity in the United States and some other
parts of North America. A language not based on
sound is the primary element that sharply demarcates
the Deaf-World from the engulfing hearing society.
The Arts
First, the language arts: ASL narratives, storytelling,
oratory, humor, tall tales, word play, pantomime, and
poetry. Theatre arts and the visual arts also address
Deaf culture and experience.
History
Ethnic groups construct rootedness, with forms of
expression that include history, territory, and geneal-
ogy. The Deaf-World has a rich history recounted in
stories, books, films, and the like. Members of the
Deaf-World have a particular interest in their history
for ‘‘[T]he past is a resource in the collective quest for
meaning [and ethnic identity]’’ (Nagel, 1994, p. 163). A
sense of common history unites successive generations
(Fishman, 1982, 1989; A. D. Smith, 1986).
Kinship
Many ethnic groups have a belief in the land of their
ancestors. However, ‘‘territory is relevant not because
294 Journal of Deaf Studies and Deaf Education 10:3 Summer 2005
starts late, usually when the Deaf child meets other
Deaf children in school (Johnson & Erting, 1989).
Members of the Deaf-World have a great handicap and
a great advantage when it comes to intergenerational
continuity. The handicap is that their hearing parents
usually have a different ethnocultural identity that,
lacking a shared language, they cannot pass on to their
children. Moreover, they commonly do not advocate in
the schools, community, courts, and so on for their
Deaf child’s primary language. Minority languages
without parental and community support are normally
endangered. The great advantage of the Deaf-World
lies in the fact that there will always be intergenera-
tional continuity for sign language because there will
always be visual people who take possession of that
language in preference to any other and with it the
wisdom and values of generations of Deaf people
before them. (Although one can imagine an interven-
tion in the future that would provide high-fidelity
hearing to Deaf children and thus threaten intergen-
erational continuity, it seems likely that most countries
will not be able to afford it, and that most Deaf parents
will continue to refuse such interventions with their
Deaf children.)
When we think of kinship, yet other scholars
maintain, what is at stake is common ancestors, what
Joshua Fishman (1977) termed paternity—real or
putative biological connections across generations.
Johnson and Erting (1989) suggested that what is
primary in this biological criterion for kinship is not
genealogy but biological resemblance across genera-
tions. In that case, members of the Deaf-World are kin
because Deaf people resemble one another biologically
in their reliance on vision for language and for much
else (Johnson & Erting, 1989). To some extent, like the
members of many other ethnic groups, Deaf people
come by their biological resemblance through heredity
more often than not. The estimate commonly cited is
50% of all people born deaf with little or no usable
hearing are so for hereditary reasons (Reardon et al.,
1992). However, another 20% are Deaf for reasons
unknown; many of those may be hereditarily Deaf
people not aware of the role of their ancestry (S. Smith,
1995).
To summarize in the words of social scientist
Arthur Smith
Ta b l e 2 Deaf-World—hearing world boundaries
Deaf-World Overlap Hearing world
Sign language Interpreter services Spoken language
Social activities Religious services Law enforcement
Sign language
teaching
Consumer goods
and services
Employment
(not Deaf related)
Political activities Deaf history
Military services
Athletics
Deaf education
Garbage collection
Arts and leisure
Finding
employment
Deaf service
agencies
Medical care
Banking
Transportation
Publishing
By involving a collective name, by the use of symbolic
images of community, by the generation of stereo-
types of the community and its foes, by the ritual
performance and rehearsal of ceremonies, by the
communal recitation of past deeds and ancient hero’s
exploits, men and women partake of a collectivity and
its historic fate which transcend their individual
existences. (A. D. Smith, 1986, p. 46)
Many scholars in the field of ethnicity believe that
these ‘‘internal’’ properties of the ethnic group just
reviewed must also be accompanied by an ‘‘external’’
property, a boundary separating the minority from
other ethnicities, in particular, the majority ethnicity
(Barth, 1969). Does the Deaf-World in the United
States occupy its own ecological niche? Does it look to
itself for the satisfaction of certain needs, while looking
to the larger society for the satisfaction of other
needs—and conversely?
Ethnic Boundaries
Table 2 shows, at the left, activities that are primarily
conducted by Deaf people for Deaf people in the Deaf-
World in the United States; at the right, activities in
the hearing world that impact Deaf people; and in the
middle, areas of overlap. The more Deaf people cele-
brate their language and culture, the more they affirm
their distinct identity, the more they reinforce the
boundary delineating them from the hearing world.
Language comes first for it always plays a powerful role
in maintaining ethnic boundaries, but especially so in
the case of Deaf people because hearing people are
rarely fluent in visual language and members of the
Ethnicity, Ethics, and the Deaf-World 295
Deaf-World are rarely fluent in spoken language. Next,
Deaf-World social activities are organized and con-
ducted by Deaf people with little or no hearing
involvement. On the other hand, law enforcement is
a hearing world activity. Religious services overlap
the Deaf and hearing worlds; there are missions to
the Deaf, Deaf pastors, and signed services, but the
operation of the house of worship is generally in
hearing hands. All in all, the Deaf-World keeps to itself
for many of its activities; it collaborates in a few with
the hearing world; and it leaves the really broad
responsibilities such as law enforcement to the larger
society; in this, it is like other ethnic groups, such as
Hispanic Americans.
This brief survey is intended to show that the
Deaf-World in the United States today meets the
criteria put forth for ethnic groups (also see Erting,
1978, 1982; Johnson & Erting, 1979, 1982, 1984, 1989;
Markowicz & Woodward, 1978; Padden & Markowicz,
1976). Classifying the Deaf-World as an ethnic group
should encourage those who are concerned with Deaf
people to do appropriate things: learn their language,
defend their heritage against more powerful groups,
study their ethnic history; and so on. In this light, the
Deaf-World should enjoy the rights and protections
accorded other ethnic groups under international law
and treaties, such as the United Nations Declaration
of the Rights of Persons Belonging to National or
Ethnic, Religious and Linguistic Minorities (United
Nations, 2003a).
as detox centers. However, this understanding of
alcoholism dates from the latter half of the 20th
century. In the first half, the temperance movement
branded excessive drinking as voluntary, and the
movement promoted not treatment but prohibition.
With the shift in the construction of alcoholism from
illegal (and immoral) behavior to illness, the need was
for medical research and treatment, halfway houses,
hospital wards, outpatient clinics, and specialized
hospitals (Gusfield, 1982).
Homosexuality went from moral flaw, to crime, to
treatable disability, to a minority group seeking civil
rights (Conrad & Schneider, 1980). Shortness came to
be seen as a disability of childhood, not a normal varia-
tion, when growth enzyme was discovered, not before
(Downie et al., 1996; Werth, 1991). Mild mental retarda-
tion came to be seen as a disability, not merely normal
human variation in intellect, with the arrival of the IQ
test (Gelb, 1987). In societies in which sign language use
is mostly restricted to Deaf people, hearing people
commonly see being Deaf as a serious problem
requiring professional intervention; but in societies in
which sign language use is widespread because of
a substantial Deaf population—on Martha’s Vineyard
and Bali, for example—being Deaf is simply seen as
a trait, not a disability (Lane, Pillard, & French, 2000).
The case of the forest dwellers of Central Africa is
instructive. Their short stature, some 4.5 feet on
average, allows them modest caloric requirements, easy
and rapid passage through dense jungle cover in search
of game, and construction of small huts rapidly
disassembled and reassembled for self-defense and
hunting. The Bantu villagers, formerly herdsmen, now
farmers, have contempt for the pygmies because of
their puny size, and they in turn have contempt for the
villagers who are ‘‘clumsy as elephants’’ in the forest,
much too tall to move swiftly and silently; they ‘‘do not
know how to walk’’ (Turnbull, 1962, p. 79). Each group
considers the other handicapped by their physical size.
Each fails to appreciate how physical makeup, culture,
and environment are intertwined.
Despite all this evidence that disability is con-
structed in a given society at a given time, many writers
addressing ethics and Deaf people, apparently unaware
of disability studies and medical anthropology, simply
adopt the na
¨
ve materialist view when it comes to
Reasons Advanced to View the Deaf-World as
a Disability Group
Is it also appropriate to label the Deaf-World a dis-
ability group? We do not ask whether Deaf people in
fact have a disability because it is not a matter of fact:
Disability, like ethnicity, is a social construct, not a fact
of life, although it is a property of such constructs that
they appear misleadingly to be a fact of life. For
example, the social problem of alcoholism evidently
consists of this: Many Americans suffer from alcohol-
ism; there are specially trained people to help them
(alcoholism counselors, psychologists, psychiatrists,
and others) and special facilities to care for them, such
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