ingstad

Document The myth of disability in developing nations
The Lancet; London; Aug 28, 1999; Benedicte Ingstad;
Volume: 354
Issue: 9180
Start Page: 757-758
ISSN: 01406736
Subject Terms: Handicapped people
Culture
Research
Society
Abstract:
Research is being obtained that shows that in many cultures physical or mental
impairment is not necessarily what determines the status and inclusion of a
person in society.
Full Text:
Copyright Lancet Ltd. Aug 28, 1999
"You must know that in this country people hide their disabled family members at
the lands". These words were said to me by the person responsible for a Ministry
of Health rehabilitation programme in a country in Southern Africa. The
conversation took place as I introduced my interest in studying how families in
a developing country cope with care for a disabled family member. As it
happened, the lady did not succeed in convincing me, but only sharpened my
interest in looking behind what I have later come to call "the myth of the
hidden disabled".1
The first question that comes to mind with a statement like this is: Is it
really true? In European history and fairytales there are stories about people
with disability that was hidden, neglected, and abused. There are also current
cases of abuse of disabled people, but we do not use these to create a general
picture of behaviour in Europe or the USA. Such cases are judged to be
unfortunate exceptions. From developing nations come stories about hiding,
neglect, and even murder of infants with an obvious impairment. However, these
cases are not seen as exceptions or past history, but are presented in documents
from authoritative sources like WHO2 as a general and current problem in these
countries. They are seen as "attitudes" resulting from "beliefs".
Fortunately, we are beginning to obtain research that presents a different
picture. We have learned that in many cultures physical or mental impairment is
not necessarily what determines the status and inclusion of a person in society.
More important are family and kinship ties, competence in doing useful tasks for
the good of the household, and the ability to behave in a socially accepted
manner. Beliefs about the origin of disability do play a part, but more so in
the search for therapy than in determining the acceptance of the disabled person
into society.3-5 We have also learned that when families are unable to cope with
the care of a disabled relative it is more commonly a result of poverty, lack of
support, and lack of knowledge about what can be done to improve the situation
than a result of lack of love and negative attitudes.1
Thus the second question to ask is: How can such a myth prevail despite
contradicting evidence? An impairment stands out as a visible symbol of
misfortune, one that reflects not only on the individual but also on the close
family. This is especially true in cultures in which reasons for misfortune are
explained in terms of disturbed social relationships. This myth stands in
contrast to another myth that is commonly upheld; the myth that elderly people
in developing countries are well cared for by their families.6 Ageing, however,
is a natural event, whereas an impairment is thought of as something not wished
for or planned for, and is therefore stigmatising.7
When a public officer gives a statement like the one above, she forgets the fact
that most rural families in her country spend a large part of the year in rural,
agricultural areas. She also does not take into consideration that it is common
for many elderly people and children not attending school to remain there for
most of the year. In such rural areas milk is abundant, and people can pick
roots and berries just outside the family compound instead of having to share
scarce food rations with family members in the village. And nobody would say
that an elderly grandmother or a healthy 4-year-old is "hidden". The lady from
the ministry, who is trained in "modern ways" by well-meaning "experts" from
abroad, tends to forget her own cultural knowledge and sees what she is made to
believe is there. She is also required to adopt the explanations of donors to
justify the implementation of a new project and the subsequent allocations to be
made from the government budget.
This does not mean that rehabilitation programmes are not needed-they clearly
are. But while in the 1980s there was a tendency to implement ready-made models
such as the WHO or International Labour Organisation community-based
rehabilitation programmes in developing countries, today there is more awareness
about the need for such programmes to be adapted to the particular circumstances
of the community.
In that sense, it is important to consider "the myth of the hidden disabled".
The repercussion of planning services based on such false myths could easily be
that the needs of the target groups are missed-whether this means people with a
disability, elderly people, or others. Thus, the chances of compliance and
success of the project are also reduced. In recent years, however, many people
with a disability in developing nations have become more vocal and able to speak
for themselves before the authorities. This is a positive trend that will become
even stronger in the future. We should not forget, however, that these
spokespeople are usually an elite as far as education and ambitions are
concerned, and do not necessarily represent the needs of poor people with
disabilities living in rural areas of developing countries. The voices of the
latter group must also be heard.
[Reference]
References
[Reference]
1 Ingstad B. Community-based rehabilitation in Botswana: the myth of the hidden
disabled. Lewiston: Edwin Mellen Press, 1997.
2 Helander E. Rehabilitation for all: a guide to the management of
community-based rehabilitation, 1: policymaling and planning. Geneva: WHO, 1984.
3 Ingstad B, Whyte SR. Disability and culture. Berkeley and Los Angeles:
University of California Press, 1995.
4 Whyte SR. Questioning misfortune. Cambridge: Cambridge University Press, 1998.
5 Whyte SR. Slow cookers and madmen: competence of heart and head in rural
Uganda. In: Jenkins R, ed. Questions of competence: culture, classification and
intellectual disability. Cambridge: Cambridge University Press, 1998.
6 Ingstad B, Bruun FJJ, Sandberg E, Tlou S. Care for the elderly--care by the
elderly: the role of elderly women in changing Tswana society. J Cross-Cultural
Gerontol 1992; 7: 379-98.
7 Jenkins R. Questions of competence: culture, classification and intellectual
disability. Cambridge: Cambridge University Press, 1997.
[Author note]
Department of General Practice and Community Medicine, Section for Medical
Anthropology, University of Oslo, Norway
(B Ingstad PhD)
(e-mail: benedicte.ingstad@samfunnsmed.uio.no)
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