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Some texts of / by / about Indian Parents with Disabled Children
Indian parental views on their disabled children date from antiquity, but
publication and dissemination of relevant literature has risen sharply since
the 1970s. Much of the 'professional' literature, the questionnaire studies,
and attitude-measuring instruments on western patterns, tell singularly little
about the real-life experiences of living with a disabled child in India. The
following handful represents a slightly wider variety of literature, to thicken up
the mysteries (and incidentally drive a cultural horse and cart through the
Politically Correct jargon of Britain today).
ABRAHAM KC & ABRAHAM, Molly (2007) Broken God in the midst of
broken people. Journal of Religion, Disability & Health 11 (2) 41-52.
An Indian theologian, and his wife, a physician, reflect on their experience of
having a daughter with multiple disabilities.
AULUCK, Shanti (2007) Life is strange. J. Religion, Disability & Health 11
(2) 23-28.
An Indian psychologist and director of a parents' organisation tells of her
experience as a mother of a six-year-old daughter, completing her PhD,
when a baby boy arrives, amidst great rejoicing. An unforeseen feature is
that he has Down's syndrome...
BALASUNDARAM, Pramila (2005) Sunny's Story. Delhi: ISPCK.
After 30 years experience in a poor area of Delhi for children with mental
retardation and their families, Balasundaram based this short novel on real
events, precipitated by the disappearance of one family's son. The husband
and wife wait late at night, with mounting panic, and the mother recalls the
time 20 years earlier when she first heard that her baby has Down's
syndrome. What has become of Sunny, of the sunny temperament and
trusting nature, in a world where the weak and simple are often brutally
oppressed and abused? The story unfolds with a mixture of reconstruction
and imagination, from fragments that Sunny could tell later of his life with
the 'platform people' at Jullundur railway station, and at the docks at Calcutta,
mingled with the family's recollection of incidents from his life with them.
Somehow, on his long and haphazard travels, Sunny's simplicity had sent a
signal to the kind of people who could respond in a gruffly protective way,
despite common sense telling them to ignore him as just another among a
million destitute wanderers. Sunny stood out as one of the innocents who
might be "a gift from the Gods" (p. 116), sent to remind people of the need to
open themselves toward their unknown little brother.
BALASUNDARAM P (2007) Love is not a feeling: faith and disability in the
context of poverty. Journal of Religion, Disability & Health 11 (2) 15-22.
The author reports and interprets discussions within a self-help group of
mothers having significantly disabled children and meeting monthly over
several years, in a very poor area of South Delhi. From teenagers to women
in their 50s, these mothers come from different faith backgrounds, and some
had reached Delhi from rural areas. Most had received no practical help from
representatives of their own religious community, and they had hammer out
their own varied answers to questions of blame, guilt, karma, the will of God,
and other religious issues, amidst the pressure of often stigmatising social
attitudes.
BANERJI, Sailendra Nath (1949) Sixty years with the Deaf in India. The
Deaf in India I (1) 3-9. [Article continues, serialised in subsequent issues.]
In vol. I (1) 4-6, "Girindra Nath Bhose ... was the unfortunate father of four
deaf-mute children and had been in correspondence with England to bring
out a teacher from that country. He was a scion of the Pataldanga Bhose
family of Calcutta ... Fortunately, however, the agreement [to bring a teacher
from England] finally fell through to give room to the native enterprise ...
There was another man, Srinath Sinha, who had a deaf-mute brother whom
he was anxious to help. Providence brought these two men together. Srinath
Sinha was appointed by Girindranath as a tutor of his children. Literatures on
the education of the deaf which had been already brought from England,
were given to Srinath." After J.N. Banerji's return in October 1896 from
studies in Britain and America, "The oral method was introduced." (p. 8)
BARUA, Merry (2007) Lessons from Neeraj, my son with autism. Journal of
Religion, Disability & Health 11 (2) 29-40.
Based in Delhi as director of a national organisation, Action for Autism, Mrry
Barua gives an account of the complex journey of coming to terms with her
25-year-old son, during a period when autism was little known and still less
understood in her country.
BASU, S. & DEB, A. (1996) Parent training in children with Attention Deficit
Hyperactivity Disorder: an integrated approach for greater effectiveness.
Indian J Clinical Psychology 23: 184-191.
BOSE, Purobie (2003?) Deaf Children in Hindu Families of Calcutta.
unpublished PhD Thesis, University of Oslo.
[Seen in draft. A substantially detailed doctoral study on a fairly small number
of families.]
DALAL, Ajit K & PANDEY, N (1999) Cultural beliefs and family care of the
children with disability. Psychology and Developing Societies 11: 55-75.
(In a rural Indian context).
DESAI, Anita (1980) Clear Light of Day. London: Heinemann / Penguin.
Set in 'Old' Delhi in the mid-to-late 1970s, with frequent recall of the
childhood years of the main characters, from c. 1935 to 1947. A minor but
persistent character named Baba, apparently having significant
developmental delay in infancy (p. 103), and a substantial lack of energy and
savoir-faire in childhood and adult life, is lightly sketched via the thoughts and
observations of his sisters, and also in the author's narration, as Baba hardly
seems able to speak for himself (p. 106). Baba is portrayed as having
always needed (or been perceived by his sisters to need) special care, a
responsibility assumed by 'Aunt Mira', then inherited by his older sister Bimla.
In the novel's structure, Baba's presence serves to tie down Bimla and
explain her lack of travel and 'progress' in life. He also bolsters the contrast
between 'responsible, bossy, mission school head-girl' Bimla, who remains
rooted in decaying Old Delhi, and her shy, bossed-about, despondent,
younger sister Tara, who left home at the first opportunity, becoming (at 18)
the naive child-wife of a polished young diplomat. Baba's insubstantial,
shadowy nature and apparent absence of decisiveness, energy or action
(pp. 40-41, 103, et passim), and his hypersensitivity toward painful
experiences, whether his own or those of another man or animal beaten in
the street (14-16), might also seem to contrast with the selfishness of
the 'normal' adults, whether the parents who were preoccupied with playing
bridge and hardly seemed to notice their children, or Bimla who ignores
neighbours' protests about her dog barking through the night, or Raja, the
elder brother who climbs socially and cultivates his own self-importance.
Yet Baba is also indifferent to the vast irritation he causes by
endless high-volume playing of the same old gramophone records, and
obsessional spraying out and gathering up of his handful of pebbles. Within
his limited roles, he appears strongly manipulative of the others. Some
awareness is shown that Baba's impaired abilities were partly constructed
and enhanced by his sisters' impulses to boss, 'baby', or bully him (pp. 10,
12-13, 66, 161, 163-165). The 'retarded' identity was further emphasised by
neighbourhood rumour (p. 123). When 'Aunt' Mira, herself a pathetic figure
married at 12, widowed at 15 and punished by years of thankless servitude
in her inlaws' household, was summoned to take charge of little Baba, she
promptly taught him "games no one else had tried to play with him, thinking
him too hopelessly backward", going on to a range of other small skills (105-
106). The idle 'uselessness' of Baba is only an extreme case of the idleness
and uselessness of many of the middle-class characters, e.g. the grey,
earlier generation at the club, playing their little hand of outdated cards while
the nation hurried toward the communal massacres of Partition.
The lack of clarity about Baba's cognitive status and odd behaviour
could reflect the weakness of public information and awareness of mental
retardation and behavioural abnormalities in India from the 1930s to the
1970s: none of the novel's characters could be expected to offer informed
comments on his condition, or understand his potential for learning. Yet those
points make it improbable that Aunt Mira, having minimal education and no
experience of raising her own child, should enter the household and promptly
start training little Baba in a sequence of fine movement skills. It is also
unlikely that Desai, in 1980, meant to portray 'autism', as some reviewers
seem to assume. Any such portrayal in 1980 would more likely have
underlined features of 'classic' autism, and perhaps thrown in a 'refrigerator
mother' (one of the western hypotheses of the 1960s) rather than a
household where the parents' indifference to their children was counter-
balanced by an ayah and other servants and siblings offering care. (Some of
the description of the older Baba's behaviour is more carefully crafted, and
might be drawn from Desai's personal observations).
DESSIGANE R, Pattabiramin PZ & Filliozat J (1960) La legende des jeux
de Siva à Madurai, d'après les textes et les peintures. 2 volumes.
Pondichéry: Institut Français d'Indologie.
This French version of the Tamil Tiruvilaiyatarpuranam describes the
64 'games' of Shiva in volume I, based on a 16th century text, with paintings
in volume II. In Section 57 (I: pp. 88-92) the story appears of how Shiva was
enraged when his wife Minakshi failed to pay full attention to his learned
lecture on the Vedas, so he condemned her to rebirth in a fisher caste. Quite
understandably, their two sons Subrahmanya (Murukan) and Ganesha
reacted by throwing Shiva's books into the sea. Shiva promptly cursed
Subrahmanya to become "fils d'un marchand et qu'il serait muet" (p. 89)
[This would mean that he was mute, but not necessarily deaf.] Later Shiva set
about rehabilitating his family. Section 55: 1-14 (vol. I: pp. 85-86) tells of a
talent contest among poets, who ask Shiva to be the judge, but instead he
recommends that the merchant's remarkable son (i.e. Subrahmanya, or
Murukan) should perform the task of literary arbiter. The poets ask how such
a judge can give his verdict, since he is mute. "Le Dieu danseur leur dit que
le fils du marchand hocherait la tête en signe d'approbation" (p. 86). The
contest then goes ahead with the dumb boy judge giving his verdict by nods
and signs, thus presumably sparing the audience the boredom of listening to
a lengthy discourse on comparative poetic worthiness, with a personal
history of the judge's own remarkable achievements, before the
announcement of the winner and getting down to some serious drinking.
GUPTA, Ashum & SINGHAL, Needi (2004) Positive perceptions in parents
of children with disabilities. Asia Pacific Disability Rehabilitation Journal 15:
22-35.
GUPTA A & SINGHAL N (2005) Psychosocial support for families of children
with autism. Asia Pacific Disability Rehabilitation J. 16 (2) 62-83.
JATAKA, or Stories of the Buddha's former births (1895-1907). EB Cowell
(editor), translated by R Chalmers, WHD Rouse, HT Francis, RA Neil, EB
Cowell. Cambridge UP. 6 volumes, 2,057 pp. Reprint 1993 in two vols,
Delhi: Low Price.
In Muga-Pakkha Jataka (No. 538), the Buddha appeared as a baby prince.
Horrified by the harshness of his father, the king, he resolved to remain silent
and motionless. As the prince grew up, the King and Queen were of course
much disturbed by his absence of normal development. Courtiers tried
audiological testing. They cut spy-holes in the curtains around the prince's
bed. Looking from all four sides, they got someone to blow a conch suddenly
under the bed, while they watched whether the child jumped or turned his
head. Being an incarnation of the Buddha, of course he maintained mental
concentration and did not stir. They also suddenly shone lights on him at night.
The courtiers tried norm-referenced tests, tempting the resolute
prince successively with milk, fruit, toys or animals, according to the different
ages at which they thought a child would usually react to these stimuli. The
queen begged, pleaded and wept before the silent child. By intense mental
effort, the Buddha remained unmoved. Finally, the prognosticators told the
king the case was hopeless and the boy should be taken out the back and
killed, to which he sadly consented. (But the story did not end quite like that).
Whatever one believes about the historicity or religious value of such tales,
the developmental assessment ideas were undoubtedly recorded more than
2,000 years ago.
JEPSON, J. (1991) Some aspects of the deaf experience in India. Sign
Language Studies 20 (73) : 453-459.
Based on an unstructured sample of deaf people in rural and urban fieldwork,
Jepson tentatively describes some apparent stages in the evolution of
parental and community perceptions and attitudes, e.g. shock; cure-
shopping; acceptance that deafness is incurable, with transition to a view of
it as 'natural' (prakritic); concurrent adjustments in religious interpretations.
Such an evolution was not, however, inevitable.
KINSLEY DR (1975) The Sword and the Flute. Kali and Krsna, Dark visions
of the terrible and the sublime in Hindu mythology. Berkeley: University of
California Press.
Accounts (pp. 12-23) of the 'spontaneous' behaviour of Krishna as Divine
Child - hyperactive, naughty, impetuous, like a wild animal, stealing food with
an insatiable appetite, self-absorbed - gives a novel perspective to views on
children who are slow to learn socially expected behaviour.
KUMAR, Suman & RAO, Geeta (2008) Parental attitudes towards children
with hearing impairment. Asia Pacific Disability Rehabilitation Journal 19
(2) 111-117.
Study of 30 mothers, 30 fathers, having 0-12 year old children with hearing
impairment, at Bombay.
KUNZANG CHODEN (1993) Folktales of Bhutan. Bangkok: White Lotus.
The living tradition of these moral tales, most of which belong also to India,
blends everyday life with the spirit world. Disability, folly and deformities are
casually woven in, as in the stories of the old blind couple who catch and
nurture a hungry boy, who in turn finds their eyes for them and turns his enemy
into a cretin (pp. 21-26); and the parents who devise a successful behaviour
modification scheme for their idle, apathetic son (133-135).
MATHUR, M.L., CHOKSI, Y.J., & SINGH, T.B. (1989) Involvement of parents
and family members in rehabilitation of rural blind of Saharanpur District.
Indian Journal of Disability & Rehabilitation 3 (2) 45-60.
Part of the investigations of Community Based Rehabilitation undertaken by
the National Institute for the Visually Handicapped, Dehradun.
MEHTA, M., BHARGAVA, M., & PANDE, P. (1990) A proposed model for
the behavioural training of mentally handicapped children through parent
participation. Indian J. Disability and Rehabilitation 4 (1) 1-8.
Study at the All India Institute for Medical Science, New Delhi, on the transfer
of behaviour modification methods and skills to Indian parents.
MEHTA, Ved (1984) Daddyji - Mamaji. London: Picador. 346 pp.
Combines two books first published in 1972 (Daddyji) and 1979 (Mamaji),
giving Mehta's parental family histories. On pp. 121-31, his severe illness
early in 1938, consequent blindness, and arrangements for him to attend a
special school (when not quite five years old) are told from his father's
viewpoint as medical officer at Gujrat (Punjab). On pp. 330-342, the same
events are told from his mother's viewpoint, with superstitious reactions and
use of quack medicines to try to restore Ved's sight.
MILES, M. Concepts of mental handicap in Pakistan: towards cross cultural
& historical perspectives. Disability, Handicap & Society 7 (3) 235-255.
Includes (pp. 244-247), 'Mental retardation in families', a summary of 15
years of reported parental thoughts about their children having MR or
learning difficulties.
MILES, M. (1998) Professional and family responses to mental retardation in
East Bengal and Bangladesh, 1770s-1990s, International Journal of
Educational Development 18: 487-499.
Tracks the development and interaction of parental and professional
responses to children having mental retardation, as variously understood
during the past 250 years in Bengal.
OBEYESEKERE, Gananath (1970) The idiom of demonic possession: a
case study. Social Science & Medicine 4: 97-111.
Detailed description and analysis of incidents of mental illness and abnormal
behaviour in the life of a rural Ceylonese woman, and a diagnostic procedure
by a Buddhist monk experienced in this field: the patient is put into a hypnotic
state in which she answers questions more directly and accurately than she
could in normal consciousness. The traditional idiom of demon possession
provides a "ready made cognitive structure", with which the woman can
attempt to handle "intolerable psychological conflicts" generated by an
oppressive family situation and internalised female roles, while remaining
fully situated in the local belief system and therefore availing herself of local
acceptance and support.
"PANCHATANTRA" (1925) transl. AF Ryder, new edn 1964, Chicago
University Press.
The world's first 'special education manual', originating probably between
100 BC and 500 CE. The 'outer shell' story tells of the sons of King Amara
Sakti, who were "supreme blockheads" - and their father wants something
done about it. Vishnu Sharma, a learned Brahmin, undertakes to teach
statecraft to the stupid princes in six months through a series of amusing
animal fables, thus enlisting their interest and motivating them to learn.
PESHAWARIA, Reeta, MENON, D.K., GANGULY, Rahul, ROY, Sumit,
PILLAY, Rajam P.R.S., & GUPTA, Asha (1995) Understanding Indian
Families Having Persons with Mental Retardation. Secunderabad: National
Institute for the Mentally Handicapped. vii + 218 pp.
In this and the next listed publication, the Government of India, through the
NIMH, undertook for the first time a series of studies in which NGOs
collaborated, to develop knowledge, understanding and support information
for families having members with mental retardation and associated
conditions.
PESHAWARIA, Reeta, MENON, D.K., GANGULY, Rahul, ROY, Sumit,
PILLAY, Rajam P.R.S., GUPTA, Asha, & HORA, R.K. (1994) Moving
Forward. An information guide for parents of children with mental
retardation. Secunderabad: National Institute for the Mentally Handicapped.
ix + 270 + vii.
PFLEIDERER, Beatrice (1981) Mira Datar Dargah: the psychiatry of a
Muslim shrine. In: I Ahmad (ed) Ritual and Religion among Muslims in India,
195-233. New Delhi: Manohar.
Dating back to the 16th century, the tomb of Mira Datar, near Ahmedabad,
specialises in mental health problems. Case reports make clear that some
mentally retarded people were and are also brought by their parents,
though "More precisely [the shrine] has a reputation for healing those stricken
by a bhut" [spirit, ghost] (p. 218).
RICHMAN, Paula (1997) Extraordinary Child. Poems from a South Asian
devotional genre. Honolulu: Universtiy of Hawai`i Press.
Concerns pillaittamil, "Tamil devotional poetry to an extraordinary deity or
person, addressed in the form of a child" (p. ix). One is addressed to the
goddess Minatci as a girl washing up the crockery and pots (which consist of
all the worlds). The task needs daily repetition because her husband Shiva
repeatedly messes up the universe, which Minatci must then sort out and
clean again. Shiva, in his guise of cosmic simpleton, "wanders through the
courtyard of space / destroying your work again and again, / and then comes
before you / dancing. // You never get angry. / Every day, / you just pick up
the vessels. // Tender young girl / who plays house with the ancient universe, /
sway to and fro." (p. 9) [In a few words, Minatci becomes an icon for all who
bring up and teach children with challenging behaviour.] Themes and
activities of early childhood run through the poems. God in the little child is
worshipped and protected amidst the toys in the kitchen and back yard (11-
14).
SIDHWA, Bapsi (1988) Ice-Candy-Man. London: Heinemann / Penguin.
Located in a 'civilised' quarter of Lahore around the time of Independence
(1947), the young girl Lenny ("Lame Lenny! Three for a penny! Fluffy pants
and fine fanny!", p. 3) grows up in a privileged Parsee family, benefitting
from extra attention as a 'polio victim' (13-17) amidst the casual obscenities
and improprieties of the family servants and various hangers-on. The inter-
communal mob violence gathers pace as preparations are made for the
ancient nation to be ripped asunder. Against this background, Lenny's limp
surfaces only occasionally, as a worry or as the accompaniment to a wiggling
derrière (216-218). As the book closes, the impairment has practically
disappeared.
SKINNER, Thomas (1833) Excursions in India; including a walk over the
Himalaya Mountains, to the sources of the Jumna and the Ganges, 2nd
edition, 2 vols, London: Bentley.
Thomas Skinner on deaf children whom he noticed in Himalayan villages:--
their parents considered these children to be useless idiots; but Skinner saw
their "lively and inquisitive" faces, and did not believe it. If they were useless,
he wrote, this was not because of any imbecility on the children's side, but
arose from "The want of power in the parents to express their wishes in any
other way than by speech" (pp. 36-38). The view that 'Deaf people don't
have a problem; society has a problem in not knowing Sign', is often thought
to have arisen among politicised Deaf people in the US from the 1970s
onward. To find it expressed casually by a Himalayan explorer in the 1830s
may challenge some prejudices about the past. Skinner was not 'modern';
he was merely thoughtful, as some people have been in every age.
SWYNNERTON, Charles (1892, reprint 1978) Folk Tales from the Upper
Indus. Islamabad: National Institute of Folk Heritage.
North Indian folklore preserves some wonderfully subtle and ambiguous
accounts of disability in family and community, as for example in the
character of the mother of "Lull the Idiot" (pp. 18-31). (Lull has approximate
equivalents in the Mullah Nasruddin stories of South West Asia, or Till
Eulenspiegel of Western Europe, and many other counterparts). One tale
from Lull's rollicking life illustrates the perennial dilemma of parents whose
mentally retarded young person wants the social status of being married but
without having the necessary social awareness of gender relations. When
Lull accidentally kills a village girl with whom he was trying a bit of slap and
tickle, his widowed mother employs great cunning to conceal the disaster.
She turns Lull's stupidity to his advantage so that even when he boasts of the
killing he brings a ridiculous element into the story and is thus not believed.
The 'proof' he later fishes up from the village well serves to confirm the
villagers' belief that he is merely an innocent fool (12). The folk tale is
remarkable for its sympathy with the mother's predicament.
VIJESH, PV & SUKUMARAN, PS (2007) Stress among mothers of children
with cerebral palsy attending special schools. Asia Pacific Disability
Rehabilitation Journal 18 (1) 76-92.
Study of 50 mothers in Kerala, by interview and questionnaire.
WUJASTYK, Dominik (1999) Miscarriages of justice: demonic vengeance in
classical Indian Medicine. In: JR Hinnells & R Porter (eds) Religion, Health
and Suffering, 256-275. London: Kegan Paul International.
The punning title (it is not that justice is misdirected, but mothers miscarry
and are then blamed for losing their baby by provoking demonic attack)
belies the passion and seriousness of this chapter. Wujastyk, who has
translated and made accessible a number of Sanskrit texts of ancient and
medieval Indian medicine with due sympathy and respect, here presents
some of the more noxious ideas and religious beliefs from those sources.
Specific demons "attack children whose mothers or nurses have not
behaved properly", causing a range of serious symptoms, and often the
death of the infant or young child. (Disability is little represented, but one of
the demons causes epilepsy). Demonic attack may result from a catalogue
of female bad behaviour; but even the slightest flaw or failure to guard
against close relatives' dust or malign feelings, may invite disaster. The
pregnant woman or young mother was thus caught in a web of admonition
and blame for any adverse outcome, exacerbating her own feelings of grief
and affliction. Wujastyk laments that this toxic heritage still oppresses poor,
uneducated women across India today.
****
best, miles
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