National Council on Disability Document Archive

Cross-cultural perceptions of disability

Posted by: Jamal Mazrui
Date Mailed: Sunday, August 10th 1997 02:12 PM

Forthcoming in: Cross-Cultural Rehabilitation:
An International Perspective.  R.  Leavitt, Editor. London: 
W.B. Saunders Company (in press)


Nora Ellen Groce, Ph.D
Division of International Health
Yale School of Public Health

If rehabilitation professionals are to make a difference in the
communities in  which they work, it is essential that they
understand and appreciate the  complexity of health belief systems. 
These systems differ markedly from one  culture to another and they
tend to dictate how individuals with disability fare  within their
societies. Health belief systems also often dictate how, when and 
what type of rehabilitative care is made available to individuals
with  disability.
Ideas about disability are part of a larger culturally based system
of health  beliefs and health behaviors. All cultures have shared
ideas of what makes  people sick, what makes people well and how
people can maintain good health  through time. These beliefs help
people make sense of the world around them.  Both lay people and
health professionals tend to combine their society's health  belief
systems with knowledge gained through first hand experience. These 
individual models of belief are often referred to as explanatory
models  (Klienman 1980). Explanatory models provide a framework
within which individuals  sort through and make sense of illnesses,
injuries and disabilities.

Understanding the issue of health belief systems and individual
explanatory  models are important because there are few concepts of
disability that are  universally believed to be true. In fact,
there are considerable differences in  the way disability is
regarded from one society to the next. Although disability  tends
to be viewed negatively in many societies, this is not always the
case.   Moreover, different types of disability tend to be regarded
differently by  members of the same society, hence an individual
who has a vision impairment may  be considered a full and active
participant of a community, while in that same  community an
individual with mental health problems may be shunned.
Understanding socio-cultural models of disability is of more than
academic  interest. Unless programs for individuals with
disabilities are designed in a  culturally-appropriate way, the
opportunity to make real and effective change is  often lost.  
This chapter is not intended to catalogue every known variation in 
disability beliefs, but rather to alert the practitioners to the
fact that the  ways in which disability and rehabilitation are
conceptualized will have an  impact on the manner in which
rehabilitation professionals are received,  regarded and able to
serve their patients.

There has yet to be a society found anywhere in the world that does
not have a  complex system of beliefs concerning disability. 
Universally, societies have  explanations for why some individuals
(and not others) are disabled, how  individuals with disabilities
are to be treated, what roles are appropriate (and  inappropriate)
for such individuals and what rights and responsibilities 
individuals with disability are either entitled to or denied
(Scheer and Groce  1988).

Rehabilitation professionals are too often trained to concentrate
on clinical  goals - restoring function in a specific set of
muscles or training an  individual in daily living skills, while
ignoring the larger social networks and  culture matrix in which
those with whom they work, must live.  Being aware of  the weakness
(and strengths) of the surrounding community, enables 
rehabilitation professionals to work far more effectively with and
advocate in  partnership with those whom they serve.

It is important to note that there is still much that is not known
about  disability in society. The cross-cultural study of
disability is less than a  generation old.  Although there are
thousands of articles and books on  rehabilitation, almost all of
this research discusses disability in developed  nations. 
Moreover, the bulk of this literature focuses on bio-medical
factors  rather than socio-cultural issues (Groce and Zola 1993). 
Yet it is estimated  that 80% of all individuals with disability
today live in the developing world,  and of these 60-70% live in
rural areas (Helander:1993).  Hence it is  anticipated that every
year will bring us new information about how individuals  and
societies conceptualize and treat individuals with disabilities in 
different, and often unanticipated ways.  Nevertheless, there is
one clear  conclusion that can be drawn even at this early date: 
the lives of individuals  with disability around the globe are
usually far more limited as a result of  prevailing social,
cultural and economic constraints  than as a result of their 
specific physical, sensory, psychological or intellectual

Beliefs about Disability: A Cross-Cultural Perspective 

A history of the field of rehabilitation usually begins with 19th
or early 20th  century pioneers, and a discussion of the rise of
hospitals, clinics and  institutions.  It leaves the reader with
the distinct impression that there were  no provisions made for
those with disability before the rise of professionals.  

In fact, individuals with disability have always been part of human
society.   Actually, the earliest evidence for an individual
surviving with a significant  disability,  pre-dates humans.  At
Shanidar Cave in Iraq, a skeleton of an  elderly Neanderthal shows
that he survived for many years with a withered arm  and blindness
in one eye.  Living into his 40's, elderly by Neanderthal 
standards,  the man eventually died and his grave site was covered
by his  contemporaries with flowers, indicating that he was a
valued member of that  small social group (Solecki 1971).

Archaeologists rarely find any skeletal population  that does not
have several  individuals whose remains indicate some type of
disability.  Ancient art and  pottery, early myths and legends from
Greece and Rome, India, China and the  Americas all show the
presence of individuals with disability (Dashen 1993;  Scheer and
Groce 1988).

Not only are individuals with disability found in all known
societies, even more  significantly, all known societies seem to
have distinct ideas about how  individuals with disabilities should
be treated.  What then can be said about  disability in society
cross-culturally?  It might be best to begin by examining  the idea
of 'disability' itself.  Although in English as in some other 
languages,  a single term (disability) is used to refer to
individuals with a  wide range of physical, psychological or
intellectual impairments, in many  languages there is no one word
to refer to such individuals.   One can speak of  "the blind" or "a
deaf person" but the term "disability" which links all these 
people together in a single category may be missing, or little
used. (Rengiil  and Jarrow 1993; Scheer and Groce 1988).  

All societies do seem to recognize individuals with disability as
having some  physical, psychological or sensory attribute that
distinguishes them from other  non-disabled members of that
society.  Gallagher (1990) describes this as an  "otherness." 
However it is the cultural interpretations of this "otherness" 
that is of concern and these cultural interpretations vary
significantly from  one society to the next.  Moreover, disability
categories used by western health  professionals are not universal. 
Almost all societies have specific terms and  conceptual categories
for individuals who have moving difficulties; seeing  difficulties;
hearing and speech problems; learning difficulties; and seizure 

In addition, some cultures have developed specific categories of
disability that  are uniquely their own.  There are a number of
psychiatric disorders, known as  cultural bound syndromes for
example, that are unknown or rarely found in other  cultures.
Simons and Hughes (1985) list more than 150 of them.  "Susto" for 
example, a condition believed to be caused by a sudden fright, is
found widely  in Latin America.  A victim tends to become anxious
and depressed, listless, and  anoretic.  Women tend to be affected
far more frequently than men and in its  most extreme form, it is
believed to be fatal.  Halatime and Berge (1990) found  that in
northern Mali, the most "disabling condition" for females, is to be 
ugly.  There is widespread agreement of what physical attributes
make a woman  unattractive.  Popular beliefs hold that a man who
marries such a woman will  loose a day of life for each day spent
in such a marriage.  Given the prevailing  beliefs, marriage for
such women is rare, and only married women have full  social status
in the community (Helander 1993).  While not falling into a 
universal category of disability, these women's lives are
nonetheless, severely  restricted by a culturally defined
Social Interpretations of Disability

Societies do more than simply recognize disabling conditions in
their members.   They usually attach value and meaning to various
types of disability.  For the  purposes of this discussion, these
social beliefs will be grouped together in  three categories that
seem to regularly appear cross-culturally and which tend  to allow
one to predict how well an individual will fare in a given
community  and society: 1) Causality: the cultural explanations for
why a disability  occurs;  2) Valued and Devalued Attributes:
specific physical or intellectual  attributes are valued or
devalued in a particular society; and 3) Anticipated  Role: the
role an individual with a disability is expected to play as an
adult  in a community.

These are categories that should be familiar to rehabilitation
professionals for  they will be used as a basis upon which people's
expectations and demands for  (or avoidance of and passivity about) 
rehabilitation systems will be built.The beliefs associated with
these three categories will effect  individuals' willingness to
receive care, and family and community willingness  to support and
encourage the individual who is receiving care.  Additionally, 
these categories influence priorities, policy and a community's
willingness to  pay for care and services.   Although there are
many variations, the following  is an overview of the more salient
issues involved in each of the above  categorizations.

1) Causality

Societies treat individuals with disability well or poorly based in
part on  culturally based beliefs about why a disability occurs.  
Divine displeasure,  witchcraft or evil spirits, reincarnation and
biology are all given as the  reasons why disability occurs in the
ethnographic record (Scheer and Groce  1988).  

The birth of a child with a congenital defect is often considered
a sign of  divine displeasure with the child's parents or with the
community.  Disability  which occurs later in life may also be
considered a sign of divine displeasure  with the individual who
becomes disabled or is chronically ill.

For example, disobedience to God's law was so strongly linked to
disability in  the Old Testament, individuals with disability were
not allowed to approach the  alter.  In the New Testament, Christ
upon restoring sight to the blind man, is  reported to have said
'go and sin no more,' firmly tying the man's inability to  see to
the trad
be less sympathy and less willingness to expend resources  on their

Not all societies believe the cause of disability is divine or
supernatural. The  idea that a disability can be 'caught'  either
by touch or by sight, is found  widely.  New brides and pregnant
woman in particular, are discouraged from  seeing, hearing or
touching someone with a disability, for fear that they may  give
birth to a similarly disabled child.  Examples can be found from
Sri Lanka  (Helander 1993) to the rural United States (Groce 1985;
Newman 1969).  

This idea of contagion is so strong that some Native America
parents continue to  discourage their children from even touching
assistive technology devises, such  as wheelchairs (Thomason 1994). 
Similarly, in Kenya, huts for adults who are  disabled are still
built at some distance from the rest of the settlement, and 
utensils and other objects belonging to these individuals are not
mixed with  those of the rest of the family (Nicholls 1992). 

Modern medicine has redefined disability causation and looked for
explanations  in the natural world: genetic disorders, viruses and
accidents are now commonly  accepted as explanation for why one is
born with or becomes disabled.  But if  modern medicine has
replaced older causation concepts, it has often not done so 
completely.  The idea of blame, inherent in most cultures for
centuries often  reappears in more 'scientific' forms.  

For example, if a child is born with a disabling condition, both
professionals  and lay people are quick to ask whether the mother
smoked, drank or took drugs.    If a young man is disabled in a car
accident, many are anxious to know if he was  driving too fast, or
whether drugs or alcohol was involved.  Some of these  factors
certainly can cause a disability to occur, but such inquires often
go  beyond simple scientific curiosity.  What seems to occur is a
resurfacing of the  older need to determine whether the individuals
thus effected, are in some way  responsible for their current
condition or the condition of their children.  

It has been hypothesized that part of this interest may be a
psychological  distancing - individuals try to establish a logical
reason why a disability has  occurred to reassure themselves that
something similar will not happen to them.   But another issue here
is the continuation of the almost universal practice of 
determining causality in order to determine what demands the
individual with a  disability and that individual's family may
justifiably make on existing social  support networks and community
resources.   Sympathy and support is much more  readily given to an
individual whose disability is believed to be caused by a  genetic
anomaly, chronic illness, or random accident that, it is believed,
could  potentially affect anyone.

Causality continues to be important even in the most modern of
medical systems.   For example, in the United States, someone in
military combat who receives a  severe spinal cord injury has
access to far greater social, medical and economic  supports than
an individual with an identical injury who acquired it in a drunk 
driving accident.  The deciding factor here is not the disability
itself, but  the specific circumstances surrounding the occurrence
of the injury.

Cultural explanations about causality are intriguing, but they must
be used with  some caution.  Nkinyangi and Mbindyo (1982) doing
work in Kenya, found that  although witchcraft was regularly
offered as an explanation, only 2% of their  informants with
disabilities believed that witchcraft was the reason why they 
themselves were disabled. In the Bahamas, although supernatural
causes were  traditionally associated with disability, today, that
explanation is usually  cited only to confirm the bad opinions
about persons or families that were held  prior to the onset of the
disability (Goerdt 1989).   Conversely, in the United  States or
Canada, parents may inform friends and relatives that their child
has  been born with a particular randomly occurring genetic
syndrome, only to have  these people speculate behind the parent's
backs, about the possibility of  maternal drinking or incest being

Few societies have only one explanation of why a disability occurs. 
Rather,  different types of disabling conditions are accounted for
by different  explanations.  Profound deafness may be attributed to
marital infidelity,  whereas a disabled limb may be considered the
result of personal 'bad luck' and  'fate.'
2) Valued and Devalued Attributes

The underlying factors that determine how well an individual with
a disability  will fare in any given society, will depend not only
on how that society  believes a disability is caused, but also on
what personal attributes a society  finds important.  Those
individuals who are unable to demonstrate these  attributes will be
considered more severely  disabled (Wolfensberger 1982).    This
will in turn be reflected both in the manner in which these
individuals are  treated as well as the society's willingness, or
unwillingness to allocate  resources to meet their needs.

For example, in societies where physical strength and stamina are
valued, those  with significant physical disabilities are at a
anticipated role individuals with disability are  anticipated to
play in the community as an adult.  

At one extreme end of the continuum, a society might refuse to
allocate any  resources for those with disability and not allow
them to live. Infanticide of  even severely disabled newborns
however, is exceptionally rare in the  ethnographic literature
(Scheer and Groce 1988). Only a small handful of groups  seem to
have regularly practiced it. Historically, in such cases, death is 
usually brought about by abandoning the infant on a remote hillside
or cave  shortly after birth.  Smothering infants or otherwise
causing death at the time  of delivery has been reported in western
midwifery, where families were usually  informed that the child had
been stillborn or died immediately following  delivery  (Helander
1993).   In more recent years, the use of amniocentesis,  genetic
counseling, and the withholding of medical care in the delivery
room,  while touted as medical advances by some, are viewed by many
disability  activists as a more technologically sophisticated form
of infanticide (Asch  1990; Hahn 1989).  

Even if infanticide were practiced on a regular basis, it would
eliminate only a  small percentage of all those having a disabling
condition as most types of  congenital disability, such as deafness
or mild mental retardation, are not  discernable in infancy, and
accidents and chronic illness can occur at any point  in the life
cycle.  The intentional killing of individuals with disability 
beyond the first two weeks of life, is all but unheard of in the
ethnographic  record.  The killing of infirm or disabled elderly is
reported from several  societies, although it should be noted that
such practices are quite rare and  usually take place during
periods of extreme hardship for the group as a whole,  such as a
time of food shortages, or exceptionally severe winters.  Although 
there are isolated accounts of elderly infirm individuals being put
to death for  humanitarian reasons, the only known systematic
elimination of disabled children  and adults occurred in Germany
during the Nazi era when, in an attempt to  "purify" genetic stock,
300,000 German citizens with physical or psychiatric  disorders -
85% of Germany's institutionalized  population, were systematically 
put to death (Gallagher 1990).  Renewed discussion of the 'right to
die' and  prolongation of life due to modern medical technology has
stirred new debate on  these issues around the subject of

While infanticide is  rare, medical and physical neglect which
results in death,  are extremely common.  It is not unusually in
many countries for infants and  children with disabilities to be
"allowed" to die for want of food, medicines or  other types of
care that would be considered neglect if they were withheld from 
comparable non-disabled peers (Groce 1990).  Predictions that such
children and  adults will not live long, nor be healthy can become
self-fulfilling prophesy.  

Medical neglect can take many forms.  Parents with limited
resources may be  slower to take their disabled child to a
physician or healer should the child  appear ill, hoping that the
illness would clear on its own.  They may be less  willing to carry
a disabled child several miles to ensure participation in the 
local immunization drive.  Families that already have few resources
may want to  invest little in a child with a significant

The issue of social inclusion, over and above, inclusion in medical
care, is a  complex one.  Survival is not the only measure of
social attitudes.  In some  societies, individuals with disability
are kept alive but hardly welcomed.  In  the Micronesian island of
Paulau, someone with mental retardation is called  "ultechei" which
means "substitute" or "replacement,"  a less than-fully-human 
being.  While such individuals are maintained within the kinship
system, they  are considered a burden on the family and community
and their presence is not  welcome (Rengiil and Jarrow 1993).

It is not uncommon for individuals with significant disabilities to
be  considered a disgrace to the family, hidden from public view in
the backroom or  inner courtyard of a family house.  This is
particularly true in societies where  disability is said to be
caused by parental sin or God's displeasure.  

In some cases, while individuals with disability are valued within
their own  homes, they can anticipate no outside role in the
community.  They will be  provided basic medical services, they
will be feed, housed and cared for by  relatives, but there is no
provision made for their participation in society.   Indeed, it is
assumed that they will not want to or be able to participate in 
society. In such instances, educating these individuals, training
them to earn a  living, arranging for a marriage or even expending
time and energy to locate  medical and rehabilitative services for
them, may be considered an unreasonable  drain on a family's
resources, particularly if such resources are very limited.

Some have argued that in such societies an individual's inability
to contribute  to the family's economic needs, is the deciding
factor in what status he or she  maintains in the household and in
the community.  However, calculating a  person's contribution in
terms of formal employment, even marginal employment,  outside the
home, may be misleading.   Many individuals with a disability who
do  not work outside their own homes or family units, do make
significant  contributions to their family's economic well-being. 
All but th
rehabilitation may  be avoided by some concerned that their
improved physical abilities might lower  their chances of feeding
themselves and their families. More research is needed  on this and
many other issues that effect disability among the very poor.

A full adult role in any community implies not simply employment,
but the  ability to marry and have a family of one's own, to decide
where one will live,  with whom one will associate and a voice in
decisions made in the community.   Although societies differ as to
where, when and how individuals carry out these  roles, a good rule
of thumb for professionals evaluating the status of those  with
disability in any community, is whether such individuals are
participating  in such activities at a rate comparable to that of
their non-disabled peers (ie  individuals from comparable
socio-economic and ethnic/minority backgrounds).

In some societies, individuals with disability are given a special
role.  Used  as symbols, they are sometimes believed to be
particularly close to God, to  bring or hold good luck, or that
their existence satisfies evil spirits  (Nicholls 1992). In some
societies, individuals with disability are thought to  be
inspirational, and although ill treated on a day to day basis, at
certain  times of the year or on certain ceremonial occasions, they
become the center of  attention.  (Christmas is such an example in
the West). A special or reserved  status is not, needless to say,
necessarily an equal status.

Full acceptance, that is, status and treatment comparable to one's
non-disabled  peers, is relatively rare, but it  does exist and is
important.  For example, a  number of tribal groups around the
world such as the Azandi in East Africa and  the  Ponape of the
Eastern Carolines in the southern Pacific, warrants comment 
because of their general kindness and acceptance of children born
with obvious  impairments (Gallagher 1990). 

Indeed, communities may interpret even significantly disabling
conditions in a  positive light.  On the island of Martha's
Vineyard, off the northeast coast of  the United States, a gene for
profound hereditary deafness led to the birth of a  number of deaf
individuals.  Because deafness was so common, it was in the best 
interests of the hearing islanders to learn and use Sign Language 
and most did.   With the substantial communications barrier - the
very thing that most regularly  blocks deaf individuals from full
participation in society - breached, it is  perhaps not surprising
that deaf individuals on Martha's Vineyard, participated 
vigorously in the life of the small villages in which they lived. 
They were not  considered to be (nor did they consider themselves
to be) 'handicapped.' (Groce  1985)   The fact that individuals
with a disability assume roles comparable to  all other members of
a society is a good indication that real integration has  been

Obviously the more that the local health beliefs support the idea
that  individuals with disability are fully participating members
of a community, the  more demands may be placed upon rehabilitation
professionals to assist such  individuals.  There may also be an
opposite reaction.  If a disabling condition  is fully accepted and
thought to be caused for a specific reason, (especially if  it is
thought to occur because of divine will), individuals and families
may be  less anxious to seek rehabilitation to eliminate traits
which they do not  perceive as a problem.

Finally, the social role that an individual holds in society, may
well change  over time, as societies modernize. For example, in
societies where most members  live by manual labor, where people
live by tilling the land or watching the  flocks, many chores and
jobs can be found for many who are mildly retarded.   (Indeed, many
who are severely retarded can also make significant contributions 
to their families and communities in such places).  In
technologically  sophisticated societies, where all children are
required to attend school for a  number of years, it has become
important to identify those children who fall  below certain
standardized test levels early.  Once identified, these children 
are likely to be singled out from their peers.  Their ability to
compete in the  work force as an adult is considered to be so
compromised that in many  countries, they are placed on a formal
pension system at the age of 18 - a  system that will maintain them
for the remainder of their life.  The difference  here is not in
the mental retardation of the individual, but in the socio-economic
structure of the society into which he or she has been born.

Why Rehabilitation Professionals Need to Understand Belief Systems

The discussion about variation in the ways disability is
conceptualized and  dealt with cross-culturally is of more than
passing importance for the  rehabilitation professional.  It has
significance for virtually every part of  the process of
rehabilitation, from basic diagnosis, to treatment, to developing 
policy. Traditional diagnostic categories of disabling conditions,
folk  interpretations of the causes and consequences of living with
a disability and  willingness to follow prescribed medical and
rehabilitative courses of action  will all reflect local health
belief systems.

Even an action as simple as early childhood screening for
disability and census  taking to locate individuals with disability
so planning can begin for  rehabilitation programs, may be
complicated by such belief systems.  In many  cultures where shame
is attached to being disabled or having a disabled family  member,
and practices.  Patients  are often already combining these
practices, with or without the permission of  their physicians and
therapists.  A survey of one of the largest and most modern 
rehabilitation hospitals in Indonesia revealed that over 85% of all
those with  physical disability were also making use of traditional
healers or remedies.  In  many Native American communities, chronic
illness and disability are seen as the  outward manifestation of
disharmony between the individual, the family or the  community and
the surrounding universe (Thomason 1994).  In such instances, the 
issue to be first addressed is not the specific clinical or
rehabilitative needs  of the individual, but the restoration of
some sort of harmony or balance  between the individual and the
surrounding universe, a process that can only be  done by a
traditional healer.  Only after that are rehabilitation questions
able  to be dealt with.

Decisions on whether to go to traditional healers or to seek help
from western  practitioners or clinics, or to combine the two forms
of healing, will be based  on a variety of factors. The type of
disease or disability for which care is  sought may be important,
for some types of illness may be believed to be  treatable by
western medicine, others types may not.  The availability and 
Individuals with disabilities stand in as much need  of the other
social necessities as all other members of the community.  
Rehabilitation professionals, with an understanding of the
socio-cultural  ramifications of living with a disability, can
contribute a great deal to this  dialogue.   For if prevailing
social attitudes are not changed, much that  rehabilitation
professionals attempt to do will be fruitless.  Extensive 
rehabilitation may allow a young woman with cerebral palsy to walk
to the end of  her street and back, but if she cannot do so without
adults muttering insults  and children throwing stones, not much
has been accomplished.

A cautionary note should be added here.  There is often a tendency
for policy  makers, families and communities to turn to
professionals for definitive word on  systems of care and service
for those with disability.  It is vitally important  to remember
that those in rehabilitation should assist individuals with 
disability to represent their own claims in the community.  They
can help  empower individuals with disability and their families to
address and change  traditional health beliefs and social
attitudes, they should not become their  voices.

In urging rehabilitation professionals to bring people's attention
to the  potential of many with disability, it is imperative that
they become familiar  with traditional belief systems and health
seeking behaviors.  Culturally based  beliefs about disability are
often both strongly held and locally interpreted in  a way one
needs to understand in some detail before setting out to make
changes.  There have also been a number of successful adaptations
to disability and there  are without doubt many more as yet
undocumented, that represent real strengths  and provide decided
advantages for disabled members of the community.  In some 
communities, strong and supportive family structures, special roles
and  adaptations and a general acceptance of a specific type or
types of  disabilities, may provide a solid foundation upon which
individuals with  disabilities should build.  Many of these
adaptations might be quite local -  specific to a small community
or remote region.  Even professionals in the  nearby city or
regional hospital may be unaware that they exist.  Hence, 
community based rehabilitation workers need to ask what is
traditionally done  locally before they set out to make changes.

Modernization and westernization can affect traditional health and
disability  beliefs and behaviors, but not necessarily dictate what
old beliefs are  retained, what new beliefs are added, or how the
old and new belief systems will  recombine.  A new approach to
disability may in fact, be no better than the more  traditional
belief systems.  As traditional community supports dissolve with 
growing urbanization, individualization and a shift to a monetary
economy, where  the value of what a person is, is reflected by how
much he or she can produce,  the future is not necessarily clear
nor bright. Therefore attempts to introduce  new ides by
rehabilitation professionals must be carefully monitored.

In conclusion, it must be argued that although many types of
physical or  intellectual impairments are universal, the experience
of being disabled is  largely shaped by the health and social
beliefs of the culture in which one  lives.  Issues of class,
gender, family structure, economics, education and 
regional/national development all will have implications  as to who
is  considered to be disabled, what is expected of that individual
and how that  individual with a disability fares in his or her own


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