1

CHAPTER I
INTRODUCTION
A disability (or lack of a given ability, as the "dis" qualifier denotes) in
humans may be physical, cognitive/mental, sensory, emotional, developmental
or some combination of these. Impairment is a problem in body function or
structure; an activity limitation is a difficulty encountered by an individual in
executing a task or action; while a participation restriction is a problem
experienced by an individual in involvement in life situations. Thus disability is
a complex phenomenon, reflecting an interaction between features of a
persons body and features of the society in which he or she lives.
According to Article 1 of the United Nations Convention on Rights of
Persons with Disabilities (2006) Persons with Disabilities include those who
have long-term physical, mental, intellectual, or sensory impairments which in
interaction with various barriers may hinder their full and effective
participation in society on an equal basis with others.
In the Indian context, the Persons with Disabilities (Equal Opportunities,
Protection of Rights and Full Participation) Act, 199532 states that Person
with disability means a person suffering from not less than forty per cent of any
disability as certified by a medical authority. Further, it says, Disability
means -
1. Blindness
2. Low vision
3. Leprosy-cured
4. Hearing impairment
5. Locomotor disability
6. Mental retardation
7. Mental illness




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MENTAL RETARDATION

Definitions of "mental retardation" given by psychologists are scientific
descriptions of social reality. These scientific descriptions are only
interpretations of reality and there are many alternative interpretations (Morss,
1996). Terms such as "idiot", "moron" and "imbecile" were commonly used in
the 1 940's and 1950's to refer to someone who was so-called "feeble minded"
(Lea & Foster, 1990). Implicit in these terms is the assumption that mentally
retarded persons are social outcasts to whom basic human rights do not apply.
Such terms were later replaced with others such as backward", "mentally
defective" and "mentally subnormal" in an attempt to find less condemnatory
labels. By the late 1970's the American Association on Mental Deficiency,
presently known as the American Association on Mental Retardation (AAMR)
elected to use the term "mental retardation" to refer to those formerly known as
"defective".

At present, the concern with sensitive or sophisticated labeling is high.
Numerous attempts have been made to create appropriate terms for persons
who to various degrees deviate from norms constructed to describe what is
healthy, normal development. Terms such as "mentally handicapped",
"differently abled" and "developmentally disabled" are evidence of attempts to
reduce the stigma attached to those being labeled (Lea & Foster, 1990).
Currently terms such as "mental retardation", "mental handicap" and
"intellectual impairment" are widely used.

American Association for Mental Retardation defines mental retardation
as It refers to substantial limitations in present functioning. It is characterized
by significantly sub average intellectual functioning, existing concurrently with
related limitations in two or more of the following adaptive areas:
communication, self care, home living, social skills, community use, self
direction, health and safety, functional academics, leisure and work. Mental
retardation manifests before age 18". In this definition, significantly sub

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average intellectual functioning refers to IQ scores that are at least two standard
deviations below the mean. Therefore, mental retardation may be diagnosed in
persons with IQ's of approximately 75 or below if they demonstrate significant
deficits in at least two areas of adaptive functioning.

Adaptive behavior is the collection of conceptual, social and practical
skills that have been learned by people in order to function in their everyday
lives. Significant limitations in adaptive behavior impact a persons daily life
and affect the ability to respond to a particular situation or to the environment.
Conceptual skills
It includes the receptive and expressive language, reading and writing,
money concepts, self-direction etc.
Social skills
It includes the ability to maintain interpersonal relationship,
responsibility, self- esteem, is not gullible or nave, follows rules, obeys laws,
avoids victimization etc.
Practical skills
It includes all the personal activities of daily living such as eating,
dressing, mobility and toileting; instrumental activities of daily living such as
preparing meals taking medication, using the telephone, managing money,
using transportation and doing housekeeping activities etc.
A significant deficit in one area impacts individual functioning enough to
constitute a general deficit in adaptive behavior (AAMR, 2002).







4


Level Intelligence
Quotient
(IQ) Range
Ability at
Preschool Age
(Birth to 6
Years)
Ability at School
Age (6 to 20
Years)
Ability at
Adult Age (21
Years and
Older)
Mild 52-69 Can develop
social and
communication
skills; motor
coordination is
slightly
impaired; often
not diagnosed
until later age.
Can learn up to
about the 6th-
grade level by
late teens; can be
expected to learn
appropriate
social skills.
Can usually
achieve enough
social and
vocational
skills for self-
support; may
need guidance
and assistance
during times of
unusual social
or economic
stress.
Moderate 36-51 Can talk or learn
to communicate;
social awareness
is poor; motor
coordination is
fair; can profit
from training in
self-help.
Can learn some
social and
occupational
skills; can
progress to
elementary
school level in
schoolwork; may
learn to travel
alone in familiar
places.
May achieve
self-support by
performing
unskilled or
semiskilled
needs
supervision
and guidance
when under
economic
stress.
Severe 20-35 Can say a few
words; able to
learn some self-
Can talk or learn
to communicate;
can learn simple
May contribute
partially to
self-care under

5

help skills; has
limited speech
skills; motor
coordination is
poor.
health habits;
benefits from
habit training.
complete
supervision;
can develop
some useful
self-protection
skills in
controlled
environment.
Profound 19 or below Extreme
cognitive
limitation; little
motor
coordination;
may need
nursing care.
Some motor
coordination;
limited
communication
skills.
May achieve
very limited
self-care;
usually needs
nursing care.

Mental retardation is a controversial label that is inextricably linked with
outdated and negative stereotypes. In its place different countries popularized
alternative terms- mental disability, mental handicap, learning disability and
intellectual disability. In many Western European countries the term
Intellectually Disabled or the intellectually challenged as been used alternative
to the term mental retardation. Hence the term Intellectually Disabled is used as
an alternative to Mental retardation in this research. Intellectual disability is the
condition of incomplete development of the mind, which is especially
characterized by impairment of skills manifested during the developmental
period, skills which contribute to the overall level of intelligence.





6

SOME CAUSES OF MENTAL RETARDATION/INTELLECTUAL
DISABILITY

Before or At Conception
1. Inherited disorders (such as phenylketonuria, Tay-Sachs disease,
neurofibromatosis, hypothyroidism, and fragile X syndrome)
2. Chromosome abnormalities (such as Down syndrome)
During Pregnancy
1. Severe maternal malnutrition
2. Infections with HIV, cytomegalovirus, herpes simplex,
toxoplasmosis, rubella virus
3. Toxins (such as alcohol, lead, and methylmercury)
4. Drugs (such as phenytoin, valproate, isotretinoin, and cancer
chemotherapy)
5. Abnormal brain development (such as porencephalic cyst, grey
matter heterotopia, and encephalocele)
6. Preeclampsia and multiple births
During Birth
1. Insufficient oxygen (hypoxia)
2. Extreme prematurity
After Birth
1. Brain infections (such as meningitis and encephalitis)
2. Severe head injury
3. Malnutrition of the child
4. Severe emotional neglect or abuse
5. Toxins (such as lead and mercury)
6. Brain tumors and their treatments

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Genetic Causes
Today, more than 500 genetic causes associated with mental
retardation, many of them rare biological conditions, have been identified. For
example, fragile X syndrome is an inherited disability caused by a mutation on
the X chromosome, and it was identified in 1991. It is now recognized as the
most commonly known inherited cause of mental retardation, affecting about 1
in 4,000 males and 1 in 8,000 females. Another example of a genetic cause for
mental retardation due to a chromosomal abnormality is Down syndrome (a
chromosomal disorder wherein the individual has too few or too many
chromosomes). The nucleus of each human cell normally contains 23 pairs of
chromosomes (a total of 46). In the most common type of Down syndrome,
trisomy 21, the 21st set of chromosomes contains three chromosomes rather
than the normal pair. Certain identifiable physical characteristics, such as an
extra flap of skin over the innermost corner of the eye (an epicanthic fold), are
usually present in cases of Down syndrome. The degree of mental retardation
varies, depending in part on how soon the disability is identified, the adequacy
of the supporting medical care, and the timing of the early intervention.
Phenylketonuria (PKU), also hereditary, occurs when a person is unable to
metabolize phenylalanine, which builds up in the body to toxic levels that
damage the brain. If untreated, PKU eventually causes mental retardation.
Changes in diet (eliminating certain foods that contain this amino acid, such as
milk) can control PKU and prevent mental retardation, though cognitive
disabilities can be seen in both treated and untreated individuals with this
condition.
Toxins
Poisons that lurk in the environment, toxins, are both prenatal and
postnatal causes of mental retardation, as well as of other disabilities. Clearly,
exposures to toxins harm children and are a real source of disabilities. Here are
two reasons why toxins deserve special attention:


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1. Toxic exposures are preventable.
2. Toxins abound in our environment.
Toxins abound in our environment. All kinds of hazardous wastes are hidden in
neighborhoods and communities. One toxin that causes mental retardation is
lead. Two major sources of lead poisoning can be pinpointed. One is exhaust
fumes from leaded gasoline. The other source is lead-based paint. Children can
get lead poisoning from a paint source by breathing lead directly from the air or
by eating paint chips. For example, if children touch paint chips or household
dust that contains lead particles and then put their fingers in their mouths or
touch their food with their hands, they ingest the lead. Other concerns
include mercury found in fish, pesticides, and industrial pollution from
chemical waste (Schettler et al., 2000).

Delivery problems
During delivery, asphyxia is the most important factor causing an insult
to the CNS. It leads to cell death, which might be demonstrated with neuro
imaging techniques as leukomalacia. Premature infants and those with
intrauterine growth retardation are at special risk for damage to the cortex or
thalamus, which, in addition to affecting intelligence, causes various symptoms
of cerebral palsy (CP) and seizure disorder, depending on the location of the
pathological condition. Importantly, note that asphyxia alone does not cause
mental retardation. Neurologic symptoms during the neonatal period have a
strong association with prenatal developmental deviations and later neurologic
integrity and intellectual level. For these reasons, infants with prenatal
problems need a thorough examination for dysmorphic features and close
follow-up because multiple disabilities might become evident later in life.
Psychosocial problems
The developmental level of a growing individual depends on the
integrity of the CNS and on environmental and psychological factors. The
importance of environmental stimulation for child development has been

9

appreciated since research on children in institutions showed that development
was severely affected in a depriving environment, even if adequate physical
care was provided. Poverty predisposes the child to many developmental risks,
such as teenage pregnancies, malnutrition, abuse, poor medical care, and
deprivation. Severe maternal mental illness is another risk factor. Mothers with
severe and chronic illness might have difficulty providing adequate care and
stimulation. Maternal depression during pregnancy and postpartum has been
shown to be associated with developmental delay in children at 18 months of
age. Children of mothers who have schizophrenia are at risk for the
development of cognitive deficits, although these may not be secondary to
maternal illness but may represent a genetically determined predisposition to
schizophrenia. Psychotic illness in a child has been shown to be associated with
a decline in cognitive abilities.

Symptoms

Some children with MR/ID have abnormalities apparent at birth or
shortly thereafter. These abnormalities may be physical as well as neurologic
and may include unusual facial features, a head that is too large or too small,
deformities of the hands or feet, and various other abnormalities. Sometimes
children have an outwardly normal appearance but have other signs of serious
illness, such as seizures, lethargy, vomiting, abnormal urine odor, and failure to
feed and grow normally. During their first year, many children with more
severe MR/ID have delayed development of motor skills, and are slow to roll,
sit, and stand. However, most children with MR/ID do not develop symptoms
that are noticeable until the preschool period. Symptoms become apparent at a
younger age in those more severely affected. Usually, the first problem parents
notice is a delay in language development. Children with MR/ID are slower to
use words, put words together, and speak in complete sentences. Their social
development is sometimes slow, because of cognitive impairment and language
deficiencies. Children with MR/ID may be slow to learn to dress and feed

10

themselves. Some parents may not consider the possibility of cognitive
impairment until the child is in school or preschool and is unable to keep up
with age-appropriate expectations. Children with MR/ID are somewhat more
likely than other children to have behavioral problems, such as explosive
outbursts, temper tantrums, and physically aggressive behavior. These
behaviors are often related to specific frustrating situations compounded by an
impaired ability to communicate and control impulses. Older children may be
gullible and easily taken advantage of or led into minor misbehavior. About 10
to 40% of people with MR/ID also have a mental health disorder (dual
diagnosis). In particular, anxiety and depression are common, especially in
children who are aware that they are different from their peers or who are
maligned and mistreated because of their disability.
DEVELOPMENTAL PROFILE

Studies of adolescents with mental retardation are relatively scarce, most
being confined to children and adults (Bouras, 1994). For the most part,
behavioral, emotional and social problems and the concomitant needs for
treatment and support of MMR persons parallel those found in persons with
normal intelligence.

Adolescents are neither children nor adults, they are somewhere in
between, special and unique. During adolescence humans experience a change
in their physical, behavioral and psychological characteristics. Most centrally,
adolescents must sort out the conflicting demands and expectations of family,
community and friends; develop insights into their changing bodies and needs;
establish independence and fashion and modify their adult life. Adolescence is
truly a period of transition that encompasses the personal, social and
educational life of the individual whose emerging cognitive abilities help
her/him to cope with the accompanying responsibilities. As they begin to
handle ideas more logically and adequately, they are likely to examine what
happens critically and thoughtfully, considering alternative solutions to

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problems and spotting contradictions. Specic developmental milestones
during adolescence have been identied. A common paradigm includes the
following tasks:
1. Consolidate self-image and self-identity, including sexual identity.
2. Establish relationships outside the family
3. Separate from parents; be emancipated from childhood.
4. Prepare for life in the community: education, marriage, vocation.

Because adolescence presents such difficult challenges, it is often
viewed as a time of turmoil and disturbance (Offer, 1981). Intellectually
disabled youth enter adolescence with fewer-resources and limited adaptive
abilities and their goals in the struggle for identity and autonomy are not as
ambitious as their normal counterparts. These factors therefore further intensify
the tumultuous period of adolescence amongst mildly intellectually disabled
adolescents. Intellectually disabled adolescents have the physical attributes of
their non retarded peers but not the capacity to cope fully with the demands of
their environment or with their own desires for emancipation from childhood.
Task No Disability With Disability
Self identity










Establish
relationships
Preoccupied with
appearance
Concerned with
physical changes
Likes to show off new
physical attributes
Experiments with dress,
lifestyle
Romantic attachments
develop

Withdraw from family
unit
Physical appearance may be
distorted
Puberty may be delayed or
accelerated
Self-esteem may be diminished
Tendency to be dened by
disability
Perceived as asexual because of
disability

Family, source of socialization,
overprotects
Limited peer contact due to

12

outside the family







Separate from
parents










Preparing for role
as an adult

Intense peer
relationships
Need to t into a group






Reject childhood
attachments
Question parental
authority
Form attachments with
non parental adults
Want to be charge:
minds, bodies, friends,
transportation



Planning for the future
Making decisions
Expectation is living
independently

illness, mobility and
communication issues
Less peer contact results in
poorer social skillscant
blend in, may be ostracized

Dependency can perpetuate
childhood role
Parent is caregiver and advocate
Limited chances to meet adults
alone
Family assistance may
undermine self-efficacy,
reinforce social isolation, limit
mobility

Day-to-day stress precludes
looking ahead
Continued decision-making by
others
Low expectations for future
independence







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Physical Factors

According to Biehler and Snowman (1990) adolescent's experience the
following physical changes. While most girls have completed their growth
spurt at this age, the growth spurt for boys is not completed before the 8th and
9th grade. During this period, puberty is reached by practically all girls and by
many boys. The sex organs mature rapidly and secondary sex characteristics
appear such as breast development, rounded hips and the appearance of a
waistline in girls, a broadening of the shoulders and the replacement of fat with
muscle tissue in boys. In both sexes, pubic, axillary, facial and body hair
appear and the voice changes. Intellectually disabled persons pubertal growth
does not differ from that of their non retarded peers. As with non retarded
adolescents, puberty brings about gross physical and physiological changes.
Unless retarded adolescents are prepared for the gross physiological changes
brought about by puberty, these changes may be a more traumatic experience
for retarded persons as compared to non-retarded individuals (Bouras, 1994).

Socio Emotional Factors

The peer group becomes the general source of rules of behaviour for
adolescents. Adolescents perceive developing a code of behaviour as a move
towards adult independence. The desire to conform reaches a peak during this
period, where adolescents find it reassuring to dress and behave like others and
they are likely to alter their own opinions to coincide with those of a group.
Adolescents show great concern about what others think of them. Friendships
and quarrels become more intense and social interactions generally increase.

Research on the social development of persons with intellectually
disabled has been relatively sparse. Adolescents with mild intellectual
disability are aware of their exclusion from the activities of their chronological
peers and siblings, and of their inability to make sophisticated social
judgements (Bouras, 1994). Mildly mentally retarded adolescents may be slow

14

in interpreting social messages (e.g. acceptance/non acceptance by peers), may
have difficulty in getting along with peers and they most often take a peripheral
role in a social group (Bouras, 1994). Most mildly retarded adolescents are
eager to learn, because they wish to be as much like their normal peers as
possible (Kaplan & Sadock). Another frequently mentioned social
characteristic is the retarded individuals' imitativeness and great reliance on
external cues to guide their behaviour. In some studies, it was observed that the
intellectually disabled adolescents were more sensitive to cues provided by an
adult than non-retarded children of the same mental age (Bouras, 1994).

Cognitive Factors

The 14-16 year old period is generally marked by an adolescent's ability
to engage in formal thought, characterized by abstract thinking, hence it is a
transition period between Piaget's (1954) stages of concrete operational and
formal operational thought. According to Drew and Logan (1984), the most
obvious characteristic that distinguishes children who are mildly intellectually
disabled from those of their non retarded peers is their limited cognitive ability,
a limitation that inevitably shows up in their academic work. Many mildly
intellectually disabled adolescents have problems with the organization of
information, lack good judgement, display poor impulse control, have
limitations in foresight and have difficulty generalising from one situation to
another (Kaplan & Sadock, 1998). An additional disability often experienced
by mildly intellectually disabled persons is difficulties with memory, especially
short-term memory. Intellectually disabled people have a general language
deficit and specific problems using interpretive language.

Sexuality

Sexuality is an extensive term that covers a range of issues. It includes
not only sexual behaviour but also sexual identity, gender identity, sexual
orientation, roles, personality, relationship patterns, thoughts, feelings, attitudes

15

etc. It also includes the social, ethical, moral, cultural and spiritual concerns of
an individual. Multiple factors are influenced by and influence ones sexuality.
Everyone does not experience sexuality in the same way. Being aware of these
differences helps cater to individual needs and provide effective services to
people. Sexuality is still largely considered a taboo field in India and many
parts of South Asia although newer spaces are gradually opening up to voice
and address sexuality concerns. Sexuality is managed and moderated through
societal rules, regulations, norms and ideals in this region, as it is, in different
ways, in other parts of the world. While there is no single agreed upon
definition, here is the WHO draft working definition of sexuality (2002) that is
broadly accepted:

Sexuality is a central aspect of being human throughout life and
encompasses sex, gender identities and roles, sexual orientation, eroticism,
pleasure, intimacy and reproduction. Sexuality is experienced and expressed in
thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices, roles
and relationships. While sexuality can include all of these dimensions, not all
of them are always experienced or expressed. Sexuality is influenced by the
interaction of biological, psychological, social, economic, political, cultural,
ethical, legal, historical, religious and spiritual factors.

Dailey describes sexuality as having five components: sensuality,
intimacy, sexual identity, reproduction, and sexualization. Sensuality relates to
our need to be aware of and acceptance of our own body through all of our five
senses. Intimacy is described as our need and our ability to experience
emotional closeness to another human being, and to have that emotional
closeness predictably returned in kind. Identity is another part of being a
sexual person and is a continual process of discovering who we are in terms of
our sexuality. Reproductive aspects of sexuality deal with fertility and
conception, and child rearing. Sexualization is the term used by Dailey to
describe our use of sexuality to influence, control and manipulate others. These
five componentssensuality, intimacy, identity, reproduction, and

16

sexualizationare affected by an environment in which sociocultural
influences such as family, ethnicity and religion influence the quality of their
development. It is important to look at the five components as an integrated
whole. Each component influences and is influenced by all other components.
The greater the integration of the five aspects in an individual, the more
positive his or her sexual beingness.

Sexuality and the intellectually disabled

In a conventional society such as ours, various myths mushroom and
several stereotypes prevail especially concerning persons who do not fit into
the archetypal roles set as the way of life'. Individuals are discriminated
against on the basis of religion, class, sexual preference and disability. Not only
are they jeered at, they are deprived of their rights and privileges as citizens
and sometimes, even as humans.
Myths and Facts about Sexuality and Disability
Many people believe myths about the sexuality of people who live with
disabilities. Common myths:
1. People with intellectual disabilities do not feel the desire to have sex.
2. People with developmental and physical abilities are child-like and
dependent.
3. People with intellectual disabilities are oversexed and unable to
control their sexual urges.
Myth 1: People with disabilities are not sexual.
All people including young people are sexual beings, regardless of
whether or not they live with physical, mental, or emotional disabilities. And,
all people need affection, love and intimacy, acceptance, and companionship.
At the same time, children and youth who live with disabilities may have some
unique needs related to sex education. For example, children with

17

developmental disabilities may learn at a slower rate than do their non-disabled
peers; yet their physical maturation usually occurs at the same rate. As a result
of normal physical maturation and slowed emotional and cognitive
development, they may need sex education that builds skills for appropriate
language and behavior in public.
Myth 2: People with disabilities are childlike and dependent
This idea may arise from a belief that a disabled person is somehow
unable to participate equally in an intimate relationship. Societal discomfort
both with sexuality and also with the sexuality of people who live with
disabilities may mean that it is easier to view anyone who lives with disabilities
as an eternal child. This demeaning view ignores the need to acknowledge the
young persons sexuality and also denies her/his full humanity.
Myth 3: People with disabilities cannot control their sexuality
This myth spins off the other two if people with disabilities are neither
asexual nor child-like, then they perhaps they are oversexed and have
uncontrollable urges. Belief in this myth can result in a reluctance to provide
sex education for youth with disabilities. The reality is that education and
training are key to promoting healthy and mutually respectful behavior,
regardless of the young persons abilities.
Thus the society in general has produced stereotypical notions about
persons who are disabled. These discriminatory attitudes have brought about
feelings of pity and ridicule amongst individuals for those who are disabled. It
is important, and perhaps ironic, to note that it is not their disability per se that
is the basis of their worries but how society, on the whole, views them. The
significant concerns that the disabled face are often left unnoticed. This could
be perhaps because most individuals tend to see these issues as trivial since
persons who are disabled are seldom viewed as individuals' who have rights.
Another possible reason could be that these issues generate a sense of

18

discomfort among most people. Of the many concerns that both persons who
are intellectually challenged and their care providers deal with, sexuality
related issues are crucial.
Sexuality is an extensive concept that covers varied issues. It includes
not only sexual behavior but also our sexual identity, gender identity, sexual
orientation, roles, personality, relationship patterns, thoughts, feelings,
attitudes, etc. It also includes the social, ethical, moral, cultural, religious and
spiritual issues that are connected to an individual. Therefore, sexuality seems
to be the core of an individual's life from her/his birth to death, playing a role in
almost everything that the individual does and is. Nevertheless, it is a sad (but
true) fact that sexuality is a source of definite discomfort in society, so much so
that even uttering sexuality related terms could cause great anxiety in most
individuals.
SEXUAL BEHAVIOR OF THE INTELLECTUALLY DISABLED
The issues faced by the disabled in terms of sexuality depend upon certain
influencing factors which are
1. Type of disability
2. Time of disability acquired, congenital
3. Gender of the disabled individual
Whether or not one has been educated about sexual matters, sexuality is
a part of who we are from the moment of birth. There is evidence from
ultrasound images that male fetuses can experience erections before birth.
Observations by parents and professionals suggest that both male and female
infants experience some sort of orgasmic release. Separate from physical
sexual response, infants build their foundation for relationships by taking cues
from their own interactions with their parents as well as by observing how their
parents interact with each other. Holding, cuddling, and touching are part of the
process whereby infants learn how to relate to and trust others.

19

Intellectually disabled persons at maturity have a composite of child and
adult characteristics, e.g. an 18 year old male may have a mental age of 10
years, but age appropriate physical development (Hall, 1975). Thus, one might
argue that a mentally retarded person is a child by virtue of 1Q, but an adult by
virtue of physical development. Where sexual capacity and sexual functioning
is concerned, at maturity a mentally retarded individual is clearly an adult. As
the scientific literature demonstrates, mildly mentally retarded individuals are
sexually competent, in terms of biological capacity, desires and the
psychological significance they attribute to sexual relations (Hall, 1975). Few
investigators have examined the sexual behaviour of intellectually disabled
children. In a qualitative study of people with intellectually disability
(Heshusius, 1982) found that sexual development broadly follows the normal
pattern and that intimacy and sexual expression are a large part of the
respondent's lives, despite the fact that significant others largely ignore and
deny their sexual needs. Thus, while the sex drive of people with mild
intellectual deficits is likely to be functioning normally, the combination of
reduced intellectual functioning together with reduced peer experience and
limited formal instruction, may result in inappropriate sexual expression
(Simonds, 1980).

A number of researchers (Timmers, Du Charme & Jacobs, 1981) have
indicated that the sexual behaviour of intellectually disabled persons is learned,
shaped and reinforced by environmental factors. When intellectually disabled
persons function within a mainstream environment, their sexual behaviour is
similar to that of their same age peers (Timmers et al, 1981). Simonds (1980)
argued that although there is no difference in the sexual desires and interests of
adolescents with mild mental retardation and without retardation, the sexuality
of the former is of great concern for caregivers and parents. McCabe (1993)
showed that adults with intellectually disability are not significantly different
from adults without mental retardation in the exploration and control of their
sexual impulses. The general sexual behaviors expressed by the intellectually
challenged people are touching, kissing, caressing, masturbating, playing with

20

the genitals etc. the common sexual problems faced by the intellectually
disabled adolescents are:
1. Masturbating in public places
2. Undressing in public
3. Over affectionate behaviors
4. Excessive hugging or kissing
5. Constantly touching others

The sexual issues which face people with mental retardation are
inevitably tied into the public's mood and awareness about sexuality. Kempton
and Kahn (1991) suggested that a intellectually disabled child's general attitude
towards accepting himself/herself, as a sexual being will tend to reflect the
attitude of significant adults. For someone with learning disabilities and a
lifetime of mixed messages about sexuality and with the prevailing attitudes of
asexuality and sexual taboo, to assert a positive and wanted relationship is
perhaps the most difficult challenge of all (McCabe, 1993). A study by the
Carnegie Council on Children (cited in Heschusius, 1982) documents that the
basic framework still is the pathological model where the handicapped person
is seen as not quite normal. This denies them, among other things, the human
right to sexual expression. While caregivers argue over the ownership of
responsibility of sex education, many intellectually disabled adolescents
continue to be sexually active and ignorant (Watson, 1980). Adolescents,
including mentally retarded persons, will continue to be sexually active with or
without the approval of society. Unless they receive adequate sex education,
both unwanted pregnancies and sexually transmitted diseases are inevitable.

Children with cognitive and physical disabilities are at an even greater
disadvantage when it comes to this critical period of development. Their
disabilities may hinder their ability to play and to explore their world, which in
turn can hinder imagination and the development of a sense of purpose. Also,
many children with disabilities are socialized into an asexual role. As their non-
disabled peers are learning the differences between boys and girls, they are

21

learning that they are disabled first and a person second. This can set the stage
for poor self-esteem and low self-worth, two areas that can place a person at an
increased risk for being abused. Between the ages of 5 and 8 years, children are
learning crucial socialization skills such as the how to make friends and build
relationships. They also should be learning the qualities of good relationships
(communication, honesty, respect). Children usually learn these skills by
observation and by trial and error. Children with disabilities may have fewer
opportunities to observe other children interacting or other examples to learn
by if they are in a self-contained special education classroom. Also, if the child
is nonverbal, the family must explore alternative ways for the child to express
him or herself to others in order to form friendships.

Other crucial topics during this period are the concepts of self-esteem
and body image. Children receive messages from the media about what is
beautiful. It is important for them to understand that the media portrays an
ideal that is unattainable for most individuals. It is important for a disabled
child to recognize that he has a disability. Pretending that it does not exist will
not help him develop a balanced and realistic sense of self. However, rather
than make the disability the focal point of who he is, parents optimally should
focus on the childs strengths and the things that can be controlled, such as
grooming, diet, and exercise. Children with disabilities not only need the skills
to develop self-esteem, but they also need the skills to understand body self-
ownership. Children who rely on their parents or caregivers for extended
periods of time for their personal care and hygiene often have an inability to
distinguish between sexual and nonsexual body parts. They may not understand
body ownership because they are not allowed to own their body parts. This
places children at an increased risk for being abused. If they do not feel they
can control the kind of touch that occurs for personal care, then they will not
feel they can control any other kind of touch that may occur. Puberty is a time
of major physical changes. Interest in sex usually increases, but the amount of
interest varies from child to child. It is not uncommon for children to start
masturbating during this time, if they have not already begun.

22

All of these changes create questions in the adolescent, including dating,
sexual activity, contraception, love, and intimacy. Children with developmental
disabilities experience puberty in the same way as children without disabilities,
but a child with a disability will often have additional concerns around
negotiating sexual issues in light of his disability. To disregard a childs
concerns because he has a disability would be to ignore his needs for love and
relationships with others outside of the family. Privacy and independence are
two other central issues during adolescence. A child who has requires
additional assistance with personal care may have difficulties separating from
his family and achieving independence. On the one hand, the child has physical
needs with which he may need assistance. On the other hand, parents who fear
their children will be sexually abused or will have difficulty finding
reciprocated love may become overprotective. Additional health care education
should occur during adolescence, usually at ages 15-18. Boys and girls should
learn about testicular self-examinations and breast self examinations. Even if
an individuals disability would prevent him from performing a self-
examination correctly, he should still be taught the method and the importance
of doing them. Taking an active role in personal health care helps the
individual create and reinforce the concept of self-ownership. Girls should also
learn about pelvic exams and should start having them once they become
sexually active.

PARENTS ATTITUDE TOWARDS THE SEXUALITY OF THE
INTELLECTUALLY DISABLED ADOLESCENTS

An attitude is a complex mental state involving beliefs and feelings and
values and dispositions to act in certain ways. It is a hypothetical construct that
represents an individual's degree of like or dislike for an item. The attitude of
parents towards the sexuality of their intellectually challenged adolescents is
very important as it helps in the development of proper sexuality of the child.
But parents find it difficult to accept the sexuality of their intellectually
challenged children. The sexuality of the intellectually challenged adolescents

23

becomes a source of distress, ambiguity and conflict among the parents. When
the parents come to understand that their intellectually disabled children are
sexually active like the normal children they become depressed. The parents
hold ambivalent feelings towards the sexuality of their children and avoid
taking to them about sexuality and some parents go to the extent of avoiding
socialization. They highly worried when their children exhibit inappropriate
sexual behavior like masturbating in public etc. The sexual experience of these
adolescents are suppressed and punished by the parents.
Many parents are afraid to talk about matters relating to sexuality to
their children of the fear that: 1) talking about sex will encourage sexual
experimentation; 2) they (the parents) dont know enough to handle questions
appropriately; and 3) their children already know too much or too little. Parents
of intellectually disabled children treat them as childish, even if they are
already adult.
1. Ignored sexuality is where the Parents, see their offspring as asexual,
often dressed them in a way that is unattractive, without highlighting the
elements of his sex. Despite clear signs of becoming a woman / man is
treated in a childish way. Parents do not prepare their children for
changes associated with puberty. Parents representing such an approach
often feel a strong fear of the erotic awakening of their children through
their referral comments on matters connected with sexuality.
2. The frustrated parents though aware of the sexuality of their child, do
not accept it. They believe that all contacts with persons of the opposite
sex can affect the taking of sexual activity.
3. Tolerated sexuality is the position of the parents existence of conscious
sexual needs of their children. However, they lack a sufficient concern
about the sexual development, and to give it a desired shape. The author
stresses that in this attitude is contained an element of helplessness.
Parents consent to sexual activity at all regardless of location, time or
circumstances. Children in such families are entirely free, may freely
leave the house, the parents do not respond to masturbate. These parents,

24

believe that sex education is an important element in supporting the
development of intellectually handicapped children and should be
limited only to emergency contraception.
4. Accepted sexuality is based on the recognition of sexuality as a normal
attribute of being human. Intellectually disabled childrens sexuality is
an expression of their normality. Parents are aware of various
restrictions on their children, but are able to enjoy their physical health
and attractiveness. Parents give great importance to the neat appearance
and good manners.
In elderly children, parents exhibit concern about how best to adopt their
own forms of sexuality associated with the period of adolescence. They express
pride in the fact that their child becomes a woman / man. They adopt the
attitude of the guides in matters of sex. An important distinguishing feature of
this group is that acceptance of the dreams and plans of their children about
love, marriage and future family. Some parents who were convinced of the
unreality of these plans, has sought to clearly explain the limits of their children
in their functioning and consequences of these restrictions in adulthood. Some
parents help their children to meet the needs of sexual violence. They take
actions that are intended to familiarize your child with a possible partner, they
are in favor of coeducational and integrated classes.

Defining Sexual and Reproductive Health and Rights

Reproductive Health is defined as a state of physical, mental, and social
wellbeing in all matters relating to the reproductive system at all stages of life.
Reproductive health implies that people are able to have a satisfying and safe
sex life and that they have the capability to reproduce and the freedom to
decide if, when, and how often to do so. Implicit in this are the rights of men
and women to be informed and to have access to safe, effective, affordable and
acceptable methods of family planning of their choice, and the right to
appropriate healthcare services that enable women to safely go through
pregnancy and childbirth.

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Reproductive Rights are the rights of men and women to be informed
and to have access to safe, effective, affordable and acceptable methods of
family planning of their choice, as well as other methods of their choice for
regulation of fertility which are not against the law, and the right of access to
appropriate health-care services that will enable women to go safely through
pregnancy and childbirth and provide couples with the best chance of having a
healthy infant. Sexual Health is a state of physical, emotional, mental and
social wellbeing in relation to sexuality; it is not merely the absence of disease,
dysfunction or infirmity. Sexual health requires a positive and respectful
approach to sexuality and sexual relationships, as well as the possibility of
having pleasurable and safe sexual experiences, free of coercion,
discrimination and violence. For sexual health to be attained and maintained,
the sexual rights of all persons must be respected, protected and fulfilled.
Sexual Rights embrace human rights that are already recognized in national
laws, international human rights documents and other consensus statements.
Sexual rights include the right of all persons, free of coercion, discrimination
and violence, to:
1. The highest attainable standard of sexual health, including access to
sexual and reproductive health care services.
2. Seek, receive and impart information related to sexuality.
3. Sexuality education
4. Respect for bodily integrity
5. Choose their partner
6. Decide to be sexually active or not
7. Consensual sexual relations.
8. consensual marriage
9. Decide whether or not, and when, to have children, and
10. Pursue a satisfying, safe and pleasurable sexual life.




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Sexual rights of persons with disabilities

Intellectually disabled individuals are entitled to certain fundamental,
constitutionally protected rights. Among those is the right to personal privacy
in sexual matters. The right to personal privacy has been recognized to include:
access to and use of contraceptives for all persons, married or single; a
fundamental right to procreate; and the right to control ones body. Rights and
responsibilities which apply to people with disabilities and the people who
provide them with support include:
1. The right to maintain privacy concerning sexual thoughts, feelings
and behaviors. The right to be protected from exploitation and
assault.
2. The right to express sexual feelings appropriately without fear of
punishment.
3. The right to receive sex education regardless of age, gender or
mental capacity.
4. The right to have friendships and the right to have love relationships.
5. The right to enjoy sexuality, not suffer from it.
6. The right to express affection with others.
7. The right to have body space respected.
8. The right to determine individual sexual values.
9. The right to be free of sexist or stereotypical labeling.
10. The right to make mistakes and to receive help and correction.

Corresponding sexual responsibilities are:
1. The responsibility to respect individual and others' values.
2. The responsibility to respect individual and others' bodies. Bodies
are private property and should be treated as such.
3. The responsibility to inform others of a sexually transmitted disease.
4. The responsibility to refrain from imposing sexual preference(s) on
another.
5. The responsibility to prevent pregnancy unless it is desired.

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THE POLICY CONTEXT

Globally, while the issues of education, inclusion and employment had
received attention, it was with the adoption by the UN General Assembly of the
Standard Rules on the Equalization of Opportunities for Persons with
Disabilities in 1993 that sexuality concerns of people with disabilities was first
raised.49 Rule No. 9 of the Standard Rules on Equalization discusses the right
to family life and personal integrity. It states that Persons with disabilities
must not be denied the opportunity to experience their sexuality, have sexual
relationships and experience parenthood. Taking into account that persons with
disabilities may experience difficulties in getting married and setting up a
family, States should encourage the availability of appropriate counselling.
Persons with disabilities must have the same access as others to family-
planning methods, as well as to information in accessible form on the sexual
functioning of their bodies.

The United Nations Convention on the Rights of People with
Disabilities (UNCR PD) that was adopted in 2006 is a landmark convention
which, for the first time in history, talks about the concerns and issues of
people with disabilities at a global forum. The convention is unique in the way
that it came into force with the active participation of people with disabilities.
India is also a signatory to the UNCR PD and therefore has pledged to provide
all rights and services as stated in the convention. Some specific articles from
the Convention which can be reviewed from the lens of sexual and
reproductive health and rights are given below:

Article 3(a) from General Principles of the Convention mentions
respect for the inherent dignity of people with disabilities. It is important to
treat people with disabilities with dignity and provide them with full and
complete information and a supportive environment where they can take their
own informed decisions. The issues of bodily integrity vis--vis forced
sterilization can be regarded as an example. In other words, forced sterilization

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of people with disabilities without their consent is a violation of their right to
bodily integrity. Further, Article 17 also talks about Protecting the integrity of
the person ensuring the right to respect for the physical and mental integrity of
a person with disabilities on equal basis with others.

Article 16 highlights the aspect of Freedom from Exploitation, Violence
and Abuse and holds the State responsible to prevent all forms of exploitation,
violence and abuse by ensuring State support and assistance to people with
disabilities. There have been numerous reported cases of sexual abuse and
exploitation of people with disabilities and possibly an equal if not greater
number of unreported cases. It is the duty of the State and civil society to
educate and sensitize people with disabilities and their care providers about
sexual abuse and their vulnerability to it. Services need to be made available
for reporting and also for providing help and support to those who face such
violence and exploitation. This Article can also be interwoven with Article 5
(Equality and Non- discrimination) to draft laws and policies ensuring and
protecting people with disabilities from all forms of abuse, violence and
exploitation. Article 19 of the Convention recognises the equal right of all
persons with disabilities to live in the community, with opportunities equal to
others, and the State is called upon to take effective and appropriate measures
to facilitate full enjoyment by persons with disabilities of this right and their
full inclusion. This is a very important right from the perspective of forming a
family, getting married or becoming a parent for a person with disabilities.

The rights articulated in this Article are also inter-connected with Article
22 which talks about respect for privacy and non-interference in any aspect of
personal life. In addition, Article 23 refers to respect for home and family
demanding the elimination of all discrimination in matters of marriage, family,
parenthood and relationships for people with disabilities. The State is also
made responsible for providing accessible age-appropriate information,
reproductive and family planning education and the means necessary to enable
people with disabilities to exercise these rights.

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SEXUAL EDUCATION FOR PERSONS WITH INTELLECTUAL
DISABILITIES
Sexuality education should encompass many things. It should not just
mean providing information about the basic facts of life, reproduction, and
sexual intercourse. "Comprehensive sexuality education addresses the
biological, sociocultural, psychological, and spiritual dimensions of sexuality"
(Haffner, 1990, p. 28). According to the Sex Information and Education
Council of the U.S., comprehensive sexuality education should address:
1. Facts, data, and information;
2. Feelings, values, and attitudes; and
3. The skills to communicate effectively and to make responsible
decisions. (Haffner, 1990, p. 28)
This approach to providing sexuality education clearly addresses the many
facets of human sexuality. The goals of comprehensive sexuality education,
then, are to:
Provide information
All people have the right to accurate information about human growth
and development, human reproduction, anatomy, physiology, masturbation,
family life, pregnancy, childbirth, parenthood, sexual response, sexual
orientation, contraception, abortion, sexual abuse, HIV/AIDS, and other
sexually transmitted diseases.
Develop values
Sexuality education gives young people the opportunity to question,
explore, and assess attitudes, values, and insights about human sexuality. The
goals of this exploration are to help young people understand family, religious,
and cultural values, develop their own values, increase their self-esteem,
develop insights about relationships with members of both genders, and
understand their responsibilities to others.


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Develop interpersonal skills
Sexuality education can help young people develop skills in
communication, decision-making, assertiveness, peer refusal skills, and the
ability to create satisfying relationships.

Develop responsibility
Providing sexuality education helps young people to develop their
concept of responsibility and to exercise that responsibility in sexual
relationships. This is achieved by providing information about and helping
young people to consider abstinence, resist pressure to become prematurely
involved in sexual intercourse, properly use contraception and take other health
measures to prevent sexually-related medical problems (such as teenage
pregnancy and sexually transmitted diseases), and to resist sexual exploitation
or abuse. (Haffner, 1990,)
Sexual education for individuals with disabilities cannot therefore be
considered an optional, on the contrary it is an integral part of any intervention
aimed at modifying their behaviour. To cope with some of the specific issues of
sexual education for people with disabilities we need to take up a definite
position on the meaning of some educative principles and on the so-called
normal sexuality. The cognitive, meta-cognitive and interpersonal deficits of
disabled persons quite evidently require an emotion provoking relationship
between trainer and trainee. While a normally intelligent person is able to
correct cognitively and almost in real time inevitable mistakes and lacking
teaching and educational aspects, the person with disabilities should be able to
make good use of the emotional and affective knowledge channel, which is
usually readily available and functions better.
Emotions, in fact, motivate learning, enable to receive constant feedback
from what happens inside and in other people and take part meaningfully in the
process of knowing the world. The problem is that teaching sexual education

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we come in touch with sexual emotions and we are not very much used to share
them in the educative context. The contents we want to transmit through this
emotion provoking relationship should be determined by an arbitrary decision
within a variety of possible issues about human sexuality. Since there is no
objective and neutral method to provide sexual education for individuals with
disabilities we should be careful in choosing the data that is to be transmitted.
The words we use to explain the male and female bodies, their functioning in
the experience of pleasure, how we can make use of them by ourselves or with
someone else, then issues about sexual health, love, relationship should be
simple, domestic and familiar, and everyone should understand them, even if
they havent had a chance to study.
When we deal with individuals with mental disabilities, words are not the
right instrument for approaching reality and knowing the world. The only
genuine alternative is the direct experience on ones own body or on a models,
exactly what we do with any other kind of learning. For some reasons related to
respecting other peoples privacy it is not easy to use our or someone elses
body as a teaching instrument; however if we respect some fundamental
deontological and methodological rules, it turns out to be the only sensible way
to make knowledge possible, overcoming, at least partially, the limits imposed
by the disability.

SOCIAL MISTAKES THAT NEED TO BE ADDRESSED BY
PARENTS AND PROFESSIONALS
Beyond developing basic interpersonal skills, there are two types of
social mistakes that many individuals with disabilities will need special help to
avoid. These are: stranger-friend errors and private-public errors. A stranger-
friend error occurs when the person with a disability treats an acquaintance or a
total stranger as if he or she were a dear and trusted friend. Individuals with
mental retardation are particularly vulnerable to making these kinds of mistakes
for example, hugging or kissing a stranger who comes to the family home.

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Private-public errors generally involve doing or saying something in public that
society considers unacceptable in that context, such as touching one's genitals
or undressing in plain view of others. Committing either type of error can put
the person with a disability into a vulnerable position in terms of breaking the
law or opening the door to sexual exploitation. The majority of individuals with
intellectual disabilities who are likely to commit stranger-friend errors or
private-public errors can learn to avoid them, but it's important to start this type
of training when children are quite young (Edwards & Elkins, 1988). Most
individuals with disabilities can learn fairly early in life how to avoid private-
public errors as well. The difference between public and private, however, may
be a difficult notion for some individuals with disabilities to grasp, particularly
those with moderate or severe mental retardation. It is well recognized that
many people with disabilities have virtually no privacy (Griffiths, Quinsey, &
Hingsburger, 1989). So it is not surprising that they may not initially
understand that society considers a behavior inappropriate in one location (i.e.,
undressing in a public park) but appropriate in another (i.e., undressing in the
privacy of the bathroom).

We can teach the distinction between public and private most effectively
through modelling, explanation, and persistence. Like for example, do so in a
private place. "Close the bathroom or bedroom door and tell your child...that
this is a private behavior so we close the door" (Edwards & Elkins, 1988, p.
100). "It is the reinforcement of the concept of public and private behaviors
that provides the guidelines for decision making related to social-sexual
activity that your child must make throughout his or her life" (Edwards &
Elkins, 1988, ).

SEXUAL EDUCATION PLAN- ROLE OF SOCIAL WORKERS
Sexuality education is a life-long process and should begin as early in a
child's life as possible. We should guide the parents and explain the importance
of sexuality education right from childhood as it is difficult for us to expect
parents of disabled children to be knowledgeable or accepting of their childs

33

sexuality when they may not be comfortable with their own. Most parents did
not receive sex education from their own parents, so they have few models to
guide them.
It is necessary to guide and help the parents to cultivate in their disabled
children a sense of healthy respect for their own body, the body of others, and
interpersonal relationships. Parents have a responsibility to share their concept
of sex and sexuality within a framework of religious values, cultural morals
and personal ethics (Schneiders, 1968). Teachers of special schools and social
workers become a valuable resource for parents. We can contribute
significantly to the awareness and development which parents may need in
order to provide their child with accurate information.
So for us to guide the child and his family we as rehabilitation
councilors should follows the given below education plan depending on the age
of the disabled child (the plan is up to adolescence) which may be a difficult
task in a country like India but can be instilled in the parents who are ready to
accept the disability and face the consequences in a better manner.
Preschool (Ages 3 through 5)
When a parent is teaching the names of body parts, it is important not to
omit naming the sexual organs. They should Take advantage of the natural
learning process to teach the child what the sexual organs are called. A great
concern of parents and professionals is that children with disabilities are more
vulnerable to sexual exploitation. Therefore, one message that is important to
start mentioning when children are young is that their body belongs to them.
There are many good reasons for some adults to look at or touch children s
bodies (such as a parent giving a child a bath), but beyond that, children have
the right to tell others not to touch their body when they do not want to be
touched. Likewise, the parent needs the child should hear from the parent that
he or she should not touch strangers. Children of this age should also be taught
that if a stranger tries to persuade them to go with him or her, they should leave
at once and tell a parent, neighbor, or other adult.

34

Ages 5 through 8
It's important during this age period to become more specific in teaching
about sexuality. Up to this point, training has focused more on the social self,
avoiding negative messages about the body and its exploration, and
communicating positive messages ("your body is good, it's yours, your feelings
about yourself and your body are good"). According to the National Guidelines
Task Force (1991), some topics that may need to be addressed during this age
group are:
The correct names for the body parts and their functions
The similarities and differences between girls and boys
The elementals of reproduction and pregnancy
The qualities of good relationships (friendship, love, communication,
respect);
Decision-making skills, and the fact that all decisions have
consequences
The beginnings of social responsibility, values, and morals
Masturbation can be pleasurable but should be done in private; and
Avoiding and reporting sexual exploitation

Ages 8 through 11
There are a number of things parents and professionals can do to help
children and youth with disabilities improve self-esteem in regards to body
image. The first action parents and professionals can take is to listen to the
child and allow the freedom and space for feelings of sensitivity, inadequacy, o
unhappiness to be expressed. Be careful not to wave aside childs concerns,
particularly as they relate to his or her disability. If the disability is one that can
cause the child to have legitimate difficulties with body image, then we need to
acknowledge that fact calmly and tactfully. The disability is there; the parent
knows it and by now the child knows it. Pretending otherwise will not help the

35

child develop a balanced and realistic sense of self. One of the most important
things that parents can do during their children's prepubescent years is to
prepare them for the changes that their bodies will soon undergo.

Adolescence (12 years to 18 years)
For many teenagers, this is an active social time with many school
functions and outings with friends. For youth with disabilities, there may be
some restrictions in opportunities for socializing and in their degree of
independence. For some, it may be necessary to continue to teach distinctions
between public and private. Appropriate sexuality means taking responsibility
and knowing that sexual matters have their time and place. Depending on the
nature of the child's disability, one may have to present information in very
simple, concrete ways, or discuss the topics in conjunction with other issues.

Conclusion

Admittedly, disability and sexuality are two very complex issues, and in
a resource-poor setting like India, working on them may seem like a daunting
task. Fortunately, it is heartening to note that work on these issues has already
started. Some organizations working on sexuality and sexual and reproductive
health and rights are including issues of disabilities in their work. At the same
time, organizations working with people with disabilities are recognizing the
significance of addressing sexuality. These efforts, be they in the form of
workshops with parents and care providers, sessions in training programmes
for NGOs, panels at conferences, courses on issues of sexuality and disability,
or articles, journals and manuals provide examples of what can be done even
without large outlays of expenditure. International journals like Disability and
Society and Sexuality and Disability to name a few, regularly publish studies
by care providers and professionals discussing their experiences, especially
related to issues of sexuality, of working with people with disabilities.

36

Research in the field of disability and sexuality will yield a better
understanding not just of the concerns and requirements but also the
capabilities of people with disabilities. Extensive research is needed on all
aspects related to disability and sexuality (sexual and reproductive health, HIV
and AI DS, sex work, sexual abuse, same-sex sexual relations, differential
needs of people in different disability. Professionals in the fields of disability
and sexuality could come together with parents so that all groups can
maximally combine their knowledge, experience and skills and design
information packages and training modules on sexuality and reproductive
health. All these efforts will provide an understanding to the parents, society
and the intellectually disabled themselves about sexuality, and protect sexual
and reproductive health and rights of the intellectually disabled adolescents.




















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CHAPTER II
REVIEW OF LITERATURE

As a society, we are gradually increasing our recognition of the basic
human rights of people with developmental disabilities; however, there
continues to be a high level of anxiety and uncertainty concerning the sexuality
of people with developmental disabilities. Sexuality plays a significant role in
the lives of people with developmental disabilities as it has direct implications
for the mental, physical, and social aspects of their lives. People with
developmental disabilities, like the rest of society, have varying degrees of
reproductive ability, sexual interest, and sexual response. It is crucial that,
though often denied or forgotten, we acknowledge that individuals with
developmental disabilities have the same requirements for love, affection, and
fulfilling interpersonal relationships as any other member of society.

The literature review has been organized into seven different sections:
1. Intellectually disabled people are sexual like other people.
2. Sexual behavior of the intellectually challenged people.
3. Attitudes on sexuality of those who are intellectually disabled.
4. Current barriers that people with developmental disabilities
face in regards to their sexuality.
5. Sexual abuse of the intellectually challenged people
6. components of sex education programs for individuals with
developmental disabilities and
7. Role of social workers.




38

INTELLECTUALLY DISABLED PEOPLE ARE SEXUAL LIKE
OTHER PEOPLE
(Smith, 1987) in his report states that opportunities for sexual exploration
among disabled people, particularly the young, are very limited. There is often
a lack of privacy and they are much more likely than other young people to
receive a negative reaction from an adult if discovered. The general reduction
in life choices also has an impact on self-esteem which in turn affects sexuality.
(Cole & Cole, 1991, p. 79) in his report, Sexuality issues and rehabilitation
strategies for physically disabled adults and children says that physicians are
trained to understand pathology and physiology, but not necessarily
contemporary sexual attitudes and behaviors. Moreover, the sexual information
they do possess may be result of personal preferences and feelings as much as
scientific knowledge.

(Naud, 2001, p. 25) in his report Sexuality & Disability integrating the
two reports that as disabled children grow up they become aware of their
sexuality in the same way non-disabled children do, i.e., through television,
cinema, gossip, magazines, etc. But their social activity is more closely
supervised than that of non-disabled children and sexual expression of
behaviour is often discouraged.

Deepak (2002:5) explains how the two taboos of sexuality and disability
converge to negate the sexuality of disabled persons. He shows that the taboo
of disability and the taboo of sexuality have only recently been liberated, but
when the two are brought together, sexuality and disability spoken of as a
common reality, some of those taboos surface.

(Wilkerson, 2002:33) says that matters of sexuality have historically been
either ignored or actively suppressed for persons with intellectual disabilities,
while they are socially pressurized to adopt a non-sexual lifestyle where their

39

sexual needs are deemed to be absent or subjugated. Disabled people have had
to contend with social, cultural, and medical denial of their sexuality.

McClimens (2004) argues that sexual agency is considered as part of the rites
of passage into adulthood; but due to the infantilisation of intellectually
disabled people, they remain eternal children, denied the full status of adult
citizenship and their sexuality obscured. What is socially valued and acceptable
for others is greeted with fear, aversion and disapproval by society when it is
intellectually disabled people who want to give expression to their sexuality.

SEXUAL BEHAVIOR OF THE INTELLECTUALLY
CHALLENGED PEOPLE

Chamberlain and coworkers (1984: 445-450) in the research on Issues in
fertility for mentally retarded female adolescents: I. Sexual Activity, sexual
Abuse, and contraception reported that 88, 55 and 27% of severely,
moderately and mildly disabled women, respectively, experienced hygiene
difficulty during their menstrual periods.

Elkins and coworkers (1985: 185-188) conducted a study on A model clinic
approach to the reproductive health concerns of the mentally handicapped and
reported that a 32% rate of premenstrual syndrome, including increased autistic
behavior, irritability, restlessness, and seizures.

Pueschel and Scola (1988: 32:215-220) in his research on Parents perception
of social and sexual functions in adolescents with intellectual disability
interviewed the parents of 73 teenagers with Intellectual disabilities (36 males
and 37 females) and found that over half the teenagers had expressed an
interest in the opposite sex and that masturbation had been noticed in 40% of
the males.

Gilby, Wolf and Goldberg (1989: 34, 542-548) in his report Mentally
retarded adolescent sex offenders: A survey and pilot study reported that

40

persons with developmental disabilities often engage in more inappropriate
behaviors such as public masturbation, exhibitionism and voyeurism.

ATTITUDES ON SEXUALITY OF THOSE WHO ARE
INTELLECTUALLY DISABLED

Attitude of parents

Aunos & Feldman, (2002:285-286); Brantlinger (1985:99-108) views that
parents of children with intellectual disabilities generally hold restrictive and
ambivalent attitudes and avoid talking directly about sexuality with their
children.

Hingsburger (1992: 27(1), 8-17) in his report Healthy sexuality: Attitudes,
systems, and policies. Research & Practice for Persons with Severe
Disabilities observed that the sexual experiences of individuals with
developmental disabilities may have been so suppressed, controlled or
punished that some individuals experience a negative reaction tendency to
anything sexual. This is called erotophobia. Symptoms of this erotophobic
behaviour include fear of ones own genitals, a negative reaction to any
discussion, pictures or act involving sexual things, denial and anger over ones
own developing sexuality, self-punishment following sexual behaviour, and a
conspiracy of denial.

Wolfe (1997: 15(2), 69-90) conducted a study on The influence of personal
values on issues of sexuality and disability. Sexuality and Disability, to
examine how parents felt about issues of sexuality and relationships for
individuals with moderate and severe disabilities. The study concluded that
there was more disapproval of sexual acts and behaviors among students who
had severe cognitive impairment (this was defined by IQs of 40 or below) as
opposed to moderate (defined by IQs of 40-55) cognitive impairment.


41

Aunos and Feldman (2002:288), in a Canadian study, found that parents of
children with intellectual disabilities generally feel uneasy about their
childrens sexuality. In a Brazilian study, Block (2002:7-28) found that
sexuality education was problematic in the parenting domain.

Prilleltensky (2004:35-37) refers to findings that many women are told by
their families that they are not eligible for marriage and motherhood, and that
parents of disabled girls have lower expectations for their daughters in terms of
intimate relationships. Many well-meaning parents of disabled young men and
women believe that discussing sexuality would raise false hopes, particularly in
a society that places prime value on perfection and achievement.

Tepper (2005: 39(9):vi) points out in his report that Becoming sexually able:
Education for adolescents and young adults with disabilities. Contemporary
Sexuality, protective efforts by parents have a negative influence on the
sexuality of their growing adolescents and argues that parents themselves are
also subject to the social myths about the sexuality of their disabled children
growing into young women and men.

Sait (2006) researched the complexities of mothering when nurturing the
sexualities of their disabled daughters and highlighted the increasing
difficulties that mothers experience in coping with sexuality matters of their
disabled daughters.

Zdravka and Mihokovi (2007: 25(4):93-109) in the report on Level of
knowledge about sexuality of people with mental disabilities. Sexuality and
Disability, report that their study showed that parents of intellectually disabled
young persons do not fully acknowledge nor address their sons and
daughters need for sexuality. Parents often keep the contact of their young
intellectually disabled men and women limited, out of a fear of abuse and of
unwanted pregnancy.



42

Attitude of special school teachers

Stinson, and Dotson (2001: 27(1), 18-26) in the report Overcoming barriers
to the sexual expression of women with developmental disabilities. Research &
Practice for Persons with Severe Disabilities, reports that agencies that do not
have a policy on sexuality leave the decision making to untrained staff. Staffs
are then left to rely on their own views of sexuality and disability, on their own
values in regards to the expression of sexuality, and on their own personal
experiences when providing support to individuals who are developmentally
disabled. Sexuality, which is already an uncomfortable topic for most people,
the lack of a comprehensive policy, the lack of staff training, or a lack of
knowledge about staffs' values and attitudes can lead to inconsistencies in how
support is provided to their clients.

Attitude of the society

Tepper (2000) reports that sexuality as a source of pleasure and as an
expression of love is not readily recognized for populations that have been
traditionally marginalized by society. The matter of disabled peoples sexuality
is dominated by the socio-cultural view of sex as a source of danger.

Lfgren-Mrtenson (2004: 22(3):197- 207) in the report May I? About
Sexuality and Love in the New Generation with Intellectual Disabilities.
Sexuality and Disability, affirms the notion that society has recently become
more open-minded about both sexuality and intellectual disability, but that the
two together, sexuality and intellectual disability are perceived with
discomfort.

Drummond (2006:32-34) in her study of the attitudes of society to the
sexuality of intellectually disabled people, asserts that intellectually disabled
people remain socially excluded from wider society and remain powerless in
accessing their rights with respect to intimate relationships and sexuality
expression. This remains problematic, despite the United Nations Standard

43

Rules on the Equalisation of Opportunities for Persons with Disabilities
explicitly stating that persons with disabilities must not be denied the
opportunity to experience their sexuality, have sexual relationships and
experience parenthood (1993: rule 9).

CURRENT BARRIERS THAT PEOPLE WITH
DEVELOPMENTAL DISABILITIES FACE IN REGARDS TO
THEIR SEXUALITY

Stinson et al. (2002: 19(4), 283-291) in Staff values regarding the sexual
expression of women with developmental disabilities. Sexuality and
Disability, suggest that in addition to the discomfort teachers, family
members, or support staff may face when discussing topics of sexuality, several
other factors may hinder the appropriate presentation of sex education
materials. Values and attitudes of trainers may influence the variety of topics
that are presented. For example, information about masturbation or homosexual
practices may be omitted from the training. Training materials may not include
effective teaching methods, such as models, pictures,
role-plays, or videos. Most importantly, specific characteristics of the learner
may not be taken into account, for example, language ability, physical
limitations, or behavioral issues.

DiGiulio (2003: 12(1), 53-68), in the report Sexuality and people living with
physical or developmental disabilities: A review of key issues. The Canadian
Journal of Human Sexuality, individuals with intellectual disabilities often
lack access to information, specific to their individual circumstances, about
appropriate expression of sexuality and effective sexual communication skills.
Not only do these individuals not have access to accurate information, they are
often deliberately misinformed about sexuality in order to discourage their
interest.


44

SEXUAL ABUSE OF THE INTELLECTUALLY CHALLENGED
PEOPLE
Elvik et al (1990) reported that 37% of the women with mental retardation had
as clear physical evidence of sexual abuse and 6% had a known history of
sexual assault.

Lindsay (1994) and coworkers in his report on Client attitudes towards
relationships: Changes following a sex education programme reported a 18%
prevalence of sexual abuse in intellectually disabled women living in the
community.

Nosek, et al (2000) identified risk factors that place an individual with a
disability at an increased risk for abuse, including:

1. Denying sexuality in people with disabilities.
2. Society devaluing people with disabilities.
3. Overprotection of individuals with disabilities, stereotyping, and
reduced expectations of abilities.
4. Cognitive disabilities limiting a persons ability to recognize abuse.
5. Lack of economic independence.

Di Giulio (2003: 12(1), 53-68) in the report Sexuality and people living with
physical or developmental disabilities: A review of key issues says that one
last key component to sex education is addressing the issues of abuse.
Unfortunately, sex education programs cannot eliminate the threat of abuse;
however, they can assist the disabled in learning skills in personal safety. These
skills may include: the ability to identify inappropriate verses appropriate
behavior, the ability to clearly and effectively say no to unwanted sexual
activity, and the ability to report abusive behavior to the necessary parties.


45

COMPONENTS OF SEX EDUCATION PROGRAMS FOR
INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES

Christian et al. (2001) conducted a study and most of their respondents agreed
that women with developmental disabilities should be given the opportunity to
receive sex education (93%) and more than half said they would feel
comfortable implementing such training (61.9%). In contrast, only 7.1% said
they had received training in how to implement a sex education program.

According to a study by Lesseliers and Van Hove (2002), a great deal of
attention should be given on learning how to communicate desires, learning
about the meaning of sexual actions, and learning about pleasant and
appropriate times and places for sexual expression. Lesseliers and Van Hove
are also in favor of sex education since most of the participants in their study
were unable to name their sexual organs in either casual terms, their own
jargon, or in biological terminology. Sexuality education for youth with
developmental disabilities must, in addition to including the information that
would be included in effective programming for all youth, also include
information and skills relevant to their specific disability.

Stinson et al. (2002) emphasize the importance of comprehensive socio-sexual
education curriculum, suggesting topics related to self-awareness, self-esteem,
self-protection, relationships, and intimacy. Limiting sex education to basic
information about male and female body parts, the act of sex, and the process
of reproduction is a potential barrier to sexual growth and expression as it fails
to address the important emotional and interpersonal components of sexuality.

Wiegerink et al. (2006:1026) report that disabled persons have lower levels of
sexual knowledge than their non-disabled peers. This is disconcerting, as the
sources of sexuality education for intellectually disabled people are limited to
either the media or to formal sex education classes.



46

ROLE OF SOCIAL WORKERS
Enhancing the quality of life for individuals is one of the major tasks of
social workers. Many social workers help youths with gaining developmental
competence, assist their parents or caregivers with education, offer emotional
and social support, and attempt to influence society to be more caring to the
needs of individuals with disabilities.

Zajicek-Farber (1998: 23(3), 203-213) in the report Promoting good health
in adolescents with disabilities. Health & Social Work, suggests, although
these interventions target youths with disabilities, they also need to include
youth's sexuality. For example, social workers may specifically need to actively
encourage youth's mastery of age-appropriate socialization skills with an open
discussion about sexuality, and the increased need for personal intimacy while
creating a supportive atmosphere for confidential self-expression.

ANALYSIS OF LITERATURE REVIEW
After reviewing the literature three main findings were identified.
Studies show that society generally disapproves of individuals with
developmental disabilities engaging in sexual acts. Interestingly, society
approves of these same sexual acts for individuals who do not have disabilities.
The second finding was the large number of barriers that individuals with
developmental disabilities must face in regards to their sexuality. Most people
meet potential partners at college, at work, or in social spaces. Unfortunately,
individuals with developmental disabilities often don't get to go to college, to
work, or to social spaces, because of physical and social barriers. Individuals
with developmental disabilities are, devalued and excluded by our society, and
are often not in the right place to begin the task of self-love and self worth.
Lastly, research shows that providing sex education to individuals with
developmental disabilities enhances their sexual well being. Providing sex
education will enable individuals with developmental disabilities to make
responsible decisions regarding their sexuality that will enhance their overall
quality of life.

47

CHAPTER III
RESEARCH METHODOLOGY
Research in common parlance refers to a search for knowledge.
Research is an Endeavour to discover answers to intellectual and practical
problems through the application of scientific method. Research methodology
is the science of studying how research is done. Research methodology is a
way to systematically solve the research problem. Thus, when we talk of
research methodology we not only talk of the research methods but also
consider the logic behind the methods we use in the context of our research
study and explain why we are using a particular method or technique and why
we are not using others so that research results are capable of being evaluated
either by the researcher himself or by others.

TITLE OF THE STUDY
A study on sexuality among the intellectually challenged Adolescents in
Thiruverumbur Area.

STATEMENT OF THE PROBLEM
In a country like India, where sexuality itself is not spoken of openly,
persons who are intellectually challenged have been especially denied sexuality
education. To be able to perceive any possible relationship between sexuality
and disability would be far from the society's psyche. This is perhaps because
the intellectually challenged are thought to have either no right to sexuality
information or any need for it. Furthermore, they are often considered asexual
and are consciously sheltered and protected from sexuality related issues. This
is because society's definition of sexuality itself is so narrow that the
intellectually challenged are viewed as being incapable of feeling any sexual
desires/pleasure. Therefore, the researcher was interested in knowing the
various sexual behaviors of the intellectually challenged children and the

48

attitude of the parents towards the sexuality of these intellectually challenged
children.

NEED FOR THE STUDY
The purpose or need for the study is to establish the sexual knowledge,
experience, and needs of intellectually disabled children, as well as to gain
insight into the views of parents on the matter of sexuality and disability.

SCOPE OF THE STUDY
The myth that persons who are intellectually challenged are childlike'
and thus asexual continues to be present thus posing a difficulty for parents and
professional care providers who might have to face such issues. They have
difficulties addressing such concerns and there is a need to bring about a sense
of ease around dealing with sexuality related issues with persons who are
intellectually challenged so as to make them aware of their bodies and also to
protect them from abuse. It could be possible that some parents and care
providers are themselves uncomfortable and uneasy around sexuality related
issues. Concepts of sexuality arouse emotions of guilt and shame in them so
much so that discussing these issues with other people, especially persons with
intellectual disabilities, becomes an awkward and complicated task.
Furthermore, when care providers themselves are uneasy around the issue,
searching for the words to express the concept of sexuality can be an extremely
stressful task in itself. Concerns related to the language that is to be used to
communicate about sexuality related concepts could cause anxiety. What,
when and who should talk to the persons who are intellectually challenged
regarding sexuality issues? are queries that often tend to crop up. Perhaps
there is a need to redefine the concept of sexuality and issues related to it. For,
clarifying the issue for individuals could be the first step to normalizing' it.
This could make it easier for people to communicate with someone else
regarding issues of sexuality. The research aims at studying the sexuality of
intellectually challenged adolescents and the parental attitude towards the
sexuality of their intellectually challenged children.

49

SIGNIFICANCE OF THE STUDY
The concept of sexuality has been left unexplained and behind the veil
for so long now that people are very comfortable' with that state of mystery.
Bringing it now in the open and discussing it, especially with regard to persons
who are intellectually challenged, can be quite an arduous and threatening task.
But leaving aside the concept of sexuality may result in inappropriate sexual
behaviors and sexual abuse. According to Anne Finger (1992), Sexuality is
often the source of our deepest oppression; it is also often the source of our
deepest pain. It's easier for us to talk about and formulate strategies for
changing discrimination in employment, education, and housing than to talk
about our exclusion from sexuality and reproduction. However, it is also
important to realize that talking about sexuality and creating avenues to bring
forth the issue are key ways in which people, and perhaps society as a whole,
can increase their ease around the issue and help in including it as a significant
part of our lives. This study aims to explore the sexual behavior of the
intellectually challenged children.
OBJECTIVES OF THE STUDY

The main objectives of the study are
1. To know the demographic profile of the informants and the children.
2. To know the various sexual practices of the intellectually challenged
children.
3. To assess the parental attitudes towards the sexuality of their
intellectually challenged children.
4. To find the scope for imparting information related to sexuality in
special schools.
5. To suggests suitable remedies to modify the inappropriate sexual
behavior of the adolescents.



50

RESEARCH DESIGN

Research design can be thought of as the structure of research. It is the
"glue" that holds all of the elements in a research project together. They are
often describing a design using a concise notation that enables us to summarize
a complex design structure efficiently. Collins (1999:42) and Yin (1984:28-29)
maintain that a research design is the action plan that considers carefully the
research question, the relevant data, the gathering of data, and the analysis of
the data. Denzin and Lincoln (2005:24-26) explain that a research design
situates the researcher in the empirical world and connects the researcher to
specific sites, persons, groups, institutions, and bodies of relevant interpretive
material. The researcher has used the descriptive research design, as the
researcher has described the behavior of a subject without influencing it.

SAMPLING

Sampling is the part of universe, which represent the universe. Sampling
is the process of selecting units from a population of interest so that by
studying the sample we may fairly generalize our results back to the population
from which they were chosen. Non probability sampling is any procedure in
which elements will not have the equal opportunities of being included in a
sample. The researcher has adopted Non probability sample. For the purpose of
the study the researcher as used the convenience and snow ball sampling
technique. The researcher identified one prospective respondent and then asked
them to recommend others who they may know who also meet the criteria.
Thus the study was conducted in Thiruverumbur area, where it was convenient
for the researcher to locate the respondents, as they all live in one particular
geographical area.





51

TOOLS OF DATA COLLECTION

The researcher has chosen the interview schedule method as the tools of
data collected from among various tools in social research. The type interview
schedule selected for this study is an unstructured one and the respondents were
requested to respond to the items in the interview schedule, which is more
convenient and less time consuming.

The interview schedule consists of

Demographic profile of the informants
Demographic profile of the adolescents
Sexual practices of the intellectually challenged children
Attitude of parents towards the sexual behavior of the
intellectually challenged adolescents
Attitude of parents towards the sexual education of their
intellectually challenged children

PILOT TEST

The researcher conducted a pilot study before starting the original
research. The researcher met various professional experts and discussed about
the study. The suggestions and the opinions offered by the various experts were
taken into consideration by the researcher. The researcher also met various
special school head in charge and discussed about the study with them. Bur
unfortunately the researcher did not get proper coordination from the special
schools. With the help these discussions and suggestions the researcher decided
to undertake the study.






52

PRETEST
Before finalizing the interview schedule the researcher tested the
interview schedule with few respondents. The researcher found the responses
to be satisfactory and the pre test helped the researcher in making some
changes in the schedule to make it easier for the respondents to answer.

CONCEPTUAL DEFINITION
Adolescent
Adolescence is the period between puberty and adulthood. The period of
development corresponds roughly to the period between the ages of 12 and 19
years,
Sexuality
Sexuality is a central aspect of being human throughout life and
encompasses sex, gender identities and roles, sexual orientation, eroticism,
pleasure, intimacy and reproduction. Sexuality is experienced and expressed in
thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices, roles
and relationships. While sexuality can include all of these dimensions, not all
of them are always experienced or expressed. Sexuality is influenced by the
interaction of biological, psychological, social, economic, political, cultural,
ethical, legal, historical and religious and spiritual factors.
Intellectually disabled
It is the arrest or incomplete development of the mind, which is
especially characterized by impairment of skills manifested during the
developmental period, skills which contribute to the overall level of
intelligence.





53

OPERATIONAL DEFINITION

Adolescent
For the purpose of the study adolescent mean a child who has attained
their puberty and who is in the age category of 12 -19 years.
Sexuality
Sexuality here refers to the common behaviors exhibited by the children
in the expression of their sexual desires.
Intellectually disabled
Intellectually disabled refers to the mentally retarded children.

DATA COLLECTION

Primary data

The researcher used an interview schedule to obtain information about
the respondents, children, sexual practices and attitude of parents. The
researcher directly met the respondents and obtained the answers by explaining
the questions to them.

Secondary data

The secondary sources of data are those that are readily available. It
refers to the data that is already collected and analyzed by someone else. The
researcher collected the secondary data from the articles, journals, magazines,
Internet sites that are related to the topic.





54

LIMITATIONS OF THE STUDY
1. Due to time constrain the size of the sample is reduced to 50.
2. The tool used for data collection is unstructured one the researcher
was not able to apply the statistical testing.
3. Methodologically speaking the weakness lies in the difficulty of
generalizing the results to a broader population of intellectually
disabled children.

PROBLEM FACED BY THE RESEARCHER
1. The researcher found it difficult to get permission from the special
schools.
2. It was a time consuming process as the researcher collected the data
by approaching the respondents individually.
3. The researcher found it difficult to explain the questions to the
respondents as the questions were very sensitive.

RECOMMENDATION FOR FUTURE RESEARCH
Quantitative measures lend themselves to larger sets of data. This would
be useful as it could include special schools of a particular district or region.
The results could be utilized to tailor effective and appropriate sexuality
education programmes for district-wide implementation.

CHAPTER DESIGN
The researcher has divided the research into five common chapters
1. The first chapter consists of introduction of the study.
2. The second chapter deals with review of related studies.
3. The third chapter deals with research methodology.
4. The fourth chapter deals with analysis of data.
5. The fifth chapter deals with the case study.
6. The sixth chapter is the concluding chapter that consists of the
summary of the findings, suggestions and conclusions.


55

CONCLUSION

This chapter talks about the statement of problem, need of the study,
scope, significance and objective of the study, research design, sampling, tools
of data collection, pilot testing, pre testing, data collection, limitation of the
study, problem faced by the researcher and suggests the recommendation for
further research.

























56

CHAPTER IV
DATA ANALYSIS AND INTERPRETATION

DEMOGRAPHIC PROFILE OF THE INFORMANTS
TABLE - 1
DISTRIBUTION OF RESPONDENTS BY THEIR
RELATIONSHIP WITH THE CHILDREN

S.No
Relationship with
children
Number of
respondents
(n: 50)
Percentage
1 Mother 30 60
2 Father 17 34
3 Others 3 6
Total 50 100


From the above table it is inferred that more than half of the
respondents (60%) are mothers and less than half of the respondents (34%) are
fathers. It is a welcoming fact that fathers have started to participate and
contribute in the wellbeing of their child, thereby sharing the responsibility of
the mothers. Few respondents (6%) are kith and kins and they include the
grandfathers and mothers, uncle and aunts. The parents left their child with the
family members, and went to other country to start a new life when they came
to know that the child is intellectually disabled. They were not ready to accept
their child.



57

FIGURE 1
DISTRIBUTION OF RESPONDENTS BY THEIR
RELATIONSHIP WITH THE CHILDREN






60%
34%
6%
Mothers
Fathers
Others

58

TABLE - 2
DISTRIBUTION OF RESPONDENTS BYTHEIR AGE

S.No Age
Number of respondents
(n: 50)
Percentage
1 30 39 26 52
2 40 49 14 28
3 50 & above 10 20
Total 50 100


From the he above table it is inferred that half of the respondents (52%)
fall in the age group of 30 39. Less than one third of the respondents (28%)
are in the age group of 40 49 and less than one third of the respondents (20%)
are in the age group of 50 and above.










59

TABLE - 3
DISTRIBUTION OF RESPONDENTS BY THEIR LEVEL OF
EDUCATION

S.No Level of education
Number of respondents
(n: 50)
Percentage
1 Primary 8 16
2 Secondary 12 24
3 Higher secondary 10 20
4 UG 20 40
Total 50 100


The above table highlights that less than half of the respondents (40%)
have completed their UG, less than one third of the
respondents (24%) have completed their Secondary education, slightly more
than one third of the respondents (20%) have completed their Higher
Secondary education and 16% of the respondents have completed their primary
education. The education has a direct influence on the attitude and acceptance
level of parents towards the sexuality of the intellectually challenged children.







60

TABLE - 4
DISTRIBUTION OF RESPONDENTS BY THEIR OCCUPATION


S.No Occupation
Number of respondents
(n: 50)
Percentage
1 Government employees

15

30
2 Private employees 16 32
3 Self employed 19 38
Total 50 100

The table indicates that the distribution of respondents by their level of
occupation. More than one third of the respondents (38%) are self employed.
They are the mechanics, tea shop owners, petty shop owners, people owning
their own Xerox shops, telephone booths etc. One third of the respondents
(32%) are private employee and they work as teachers, clerks, accountants etc.
30% of the respondents are Government employees holding the post of
Managers, Engineers, design managers etc.









61

TABLE - 5
DISTRIBUTION OF RESPONDENTS BY THEIR INCOME
S.No Level of income
Number of respondents
(n: 50)
Percentage
1 Below 5000 14 28
2 5001 10,000 7 14
3 10,001- 15,000 18 36
4 15,001- 20,000 3 6
5 Above 20,001 8 16
Total 50 100


The level of income of the respondents has a direct effect on the
standard of living and the various resources the parents provide for the
wellbeing of the child. The above table shows the level of income of the
respondents. More than one third of the respondents (36%) fall in the income
level of 10,001 15,000. Less than one third of the respondents (28%) fall in
the income group of below 5000. 16% of the respondents earns above 20,000
per month. Less than one third of the respondents (14%) of the respondents fall
in the income group of 5001 10,000 and few respondents (6%) earn between
15,001- 20,000.






62

FIGURE 2
DISTRIBUTION OF RESPONDENTS BY THEIR LEVEL OF
INCOME








28
14
36
6
16
0
5
10
15
20
25
30
35
40
Below 5000 5001 10,000 10,001- 15,000 15,001- 20,000 Above 20,001
Percentage

63

TABLE - 6
DISTRIBUTION OF RESPONDENTS BY THEIR TYPE OF
MARRIAGE

S.No Type of marriage
Number of
respondents
(n: 50)
Percentage
1
consanguineous
Marriage

31

62
2 Affinal Marriage 19 38
Total 50 100


The above table shows the distribution of respondents by the type of
marriage. Majority of the respondents (62%) fall in the category of
consanguineous marriage and the rest of the respondents (38%) fall in the
category of affinal marriage. The respondents who fall in the category of
consanguineous marriage married their own uncle niece and cousins. Most of
these respondents fall in the educational category between primary and higher
secondary.








64

FIGURE 3
DISTRIBUTION OF RESPONDENTS BY THEIR TYPE OF
MARRIAGE









62%
38%
consanguineous Marriage
Affinal Marriage

65

TABLE - 7
DISTRIBUTION OF RESPONDENTS BY THE NUMBER OF
CHILDREN
S.No No of children
Number of respondents
(n: 50)
Percentage
1 Less than two 29 58
2 More than two 21 42
Total 50 100


The above table reveals the distribution of respondents by the number of
children. It is inferred that more than half of the respondents (58%) have less
than two children and rest of the respondents (48%) have more than two
children. Since majority of the first born we affected the respondents went in
for another children, on a hope that the other child will be normal. The other
reason why respondents went in for subsequent births is that, they believed that
after their life the siblings would take care of the intellectually challenged
child. The final reason for subsequent childbirth is that the respondents were
hesitant to use any contraceptive methods as they had rigid sexual beliefs.







66

TABLE - 8
DISTRIBUTION OF RESPONDENTS BY THEIR TYPE OF
FAMILY
S.No Type of family
Number of respondents
(n: 50)
Percentage
1 Joint family 22 44
2 Nuclear family 28 56
Total 50 100


The above table shows the distribution of respondents by their type of
family. It is seen more than half of the respondents (56%) live in nuclear family
and rest of the respondents (44%) live in joint family. Most of the respondents
who were once living in joint family are now living in nuclear family of the
birth of the disabled child. This is so because the respondents felt that the other
family members degrade their child and often complaint about their child. They
also felt that the other children in the family may tease their child. However,
the respondents who sticked in joint family were doing so because, they felt
that, the other family members will take care of the child and give suggestions
for their wellbeing.







67

TABLE - 9
DISTRIBUTION OF RESPONDENTS BY THEIR DOMICILE

S.No Domicile
Number of respondents
(n: 50)
Percentage
1 Urban 34 68
2 Semi Urban 16 32
Total 50 100


It is inferred from the above table that majority of the respondents (68%)
are from urban areas and rest of the respondents (32%) are from semi rural
area. The respondents from the urban areas had awareness about mental
disability than the respondents from semi urban areas. The respondents from
the urban areas had more exposure to the special school and were aware of the
resources available for the welfare of the intellectually challenged children.











68

TABLE - 10
DISTRIBUTION OF RESPONDENTS BY THEIR RELIGION

S.No Religion
Number of respondents
(n: 50)
Percentage
1 Hindu 22 44
2 Christian 11 22
3 Muslim 17 34
Total 50 100


The above table shows the distribution of respondents by their religion.
Less than half of the respondents (44%) were Hindus, one third of the
respondents (34%) were Muslims, and less than one third of the respondents
(22%) were Christians. The religion had a direct influence on the attitude of the
parents towards the sexuality of their intellectually disabled children.










69

TABLE - 11
DISTRIBUTION OF RESPONDENTS BY THE HISTORY OF
MENTAL RETARDATION IN THE FAMILY

S.No
History of MR in the
family
Number of
respondents
(n: 50)
Percentage
1 Yes 32 64
2 No 18 36
Total 50 100


The above table shows the distribution of respondents by the history of
mental retardation in the family. Majority of the respondents (64%) have a
history of mental retardation in the family and rest of the respondents (36%) do
not have previous history of mental retardation in the family. The history of
mental retardation in the family could be due to consanguineous marriage and
most of the family had a history of mental retardation from the maternal side.









70

FIGURE 4
DISTRIBUTION OF RESPONDENTS BY THE HISTORY OF
MENTAL RETARDATION IN THE FAMILY








64%
36%
Yes
No

71

DEMOGRAPHIC PROFILE OF THE
INTELLECTUALLY CHALLENGED ADOLESCENTS

TABLE - 12
DISTRIBUTION OF CHILDREN BY THEIR AGE

S.No Age Number of children
(n: 50)
Percentage
1 14 - 16 22 44
2 17 - 19 28 56
Total 50 100


The above table indicates the distribution of children by their age. It can
be inferred from the table that more than half of the children (56%) fall in the
age category of 17 19 and rest of the children (44%) fall in the age group
category of 14 16.








72

TABLE - 13
DISTRIBUTION OF CHILDREN BY THEIR GENDER

S.No Gender
Number of children
(n: 50)
Percentage
1 Male 31 62
2 Female 19 38
Total 50 100


The above table shows the distribution of children by their gender.
Majority of the children (62%) are boys and rest of the children (38%) are girls.
This shows that in this study boys are more affected than girls.












73

FIGURE 5
DISTRIBUTION OF CHILDREN BY THEIR GENDER









62
38
0
10
20
30
40
50
60
70
Male Female
Percentage

74

TABLE - 14
DISTRIBUTION OF RESPONDENTS BY THE TIME THEY
CAME TO KNOW ABOUT THE DISABILITY OF THE CHILD

S.No
Time when they came to
know about the disability
Number of
respondents
(n: 50)
Percentage
1 Within 3 years 22 44
2 4 6 years 26 52
3 After 6 years 2 4
Total 50 100


The table shows the distribution of respondents by the time they came to
know about the disability of the child. Half of the respondents (52%) came to
know about the disability of the child only during 4 6 years of the child and
less than half of the respondent (44%) came to know about the disability within
3 years of the child. Only very few respondents (4%) came to know about the
disability of the child after 6 years. Most of the respondents who made a late
diagnosis of the disability of the child are the one who are from semi urban
region and who has a poor educational background. False beliefs play a major
role here. When the child failed to achieve the developmental milestones at
each stage the parents, did not realize the seriousness and consoled themselves
by saying that it is normal for a child to have a delayed milestone. They had a
belief that developmental milestones do not have an effect on the life of the
child.




75

TABLE - 15
DISTRIBUTION OF CHILDREN BY THEIR ORDER OF BIRTH

S.No Order of birth
Number of children
(n: 50)
Percentage
1 I 23 46
2 II 16 32
3 III 5 10
4 IV 6 12
Total 50 100


The above table highlights the distribution of children by their order of
birth. Less than half of the children (46%) were first born, one third of the
children (32%) were second born, less than one third of the children (12%)
were last born, and few children (10%) third child in the family.










76

TABLE - 16
DISTRIBUTION OF CHILDREN BY THE TYPE OF MENTAL
RETARDATION

S.No
Type of mental
retardation
Number of
children
(n: 50)
Percentage
1 Mild 11 22
2 Moderate 24 48
3 Profound 7 14
4 Severe 8 16
Total 50 100


The table indicates the distribution of the children by the type of mental
retardation. Less than half of the children (48%) are moderately disabled, less
than one third of the children (22%) are in the category of mild retardation,
16% of the children are severely disabled, and few children (14%) are
profound. The children are diagnosed based on intelligence level.








77

FIGURE 6
DISTRIBUTION OF CHILDREN BY THE TYPE OF MENTAL
RETARDATION








22
48
14
16
0
10
20
30
40
50
60
Mild Moderate Profound Severe
Percentage

78

TABLE - 17
DISTRIBUTION OF CHILDREN BY OTHER DIFFICULTIES
FACED BY THEM

S.No Other difficulties
Number of children
(n: 50)
Percentage
1 Speech 21 42
2 Motor retardation 9 18
3 Deaf and dumb 8 16
4 Nervous weaknesses 7 14
5 Diabetics 5 10
Total 50 100


The above table reveals the distribution of children according to the
other difficulties faced by them. Less than half of the children (42%) suffer
from speech disorder. The children are able to speak but they were not able to
frame any complete sentences. They lack the ability to convey the messages
through proper formation of sentences. Less than one third of the children
(18%) suffer due to motor retardation. They are not able to do they work on
their own and needs the assistance of others. 16% of the children are deaf and
dumb. Less than one third of the children (14%) have problems of nervous
weaknesses. The main cause of nervous weaknesses is the continuous intake of
medicines. Finally, 10% of the children suffer from diabetics. Again,
continuous intake of medicine has side effects on other bodily functioning of
the children.




79

FIGURE 7
DISTRIBUTION OF CHILDREN BY OTHER DIFFICULTIES
FACED BY THEM







42%
18%
16%
14%
10%
Speech
Motor retardation
Deaf and dumb
Nervous weaknesses
Diabetics

80

TABLE - 18
DISTRIBUTION OF CHILDREN BY THEIR YEARS OF
SCHOOLING
S.No Years of schooling
Number of children
(n: 50)
Percentage
1 0 - 2 12 24
2 3 5 17 34
3 5 - 7 13 26
4 7 years & above 8 16
Total 50 100

The above table shows the distribution of children by their years of
schooling. Half of the children (34%) went to special school for 3 to 5 years.
Less than one third of the children (26%) went to special school for 5 to 7
years. Less than one third of the children (24%) went to special school for less
than 2 years and 16% of the children went to special school for more than 7
years. The level of schooling is affected by the financial status of the parents. It
is also affected by the severity of the disease. The children who are severely
retarded are not sent to any special school as the parents think they cannot be
trained. The belief of the parents also influences the level of schooling of the
child. If the parent visualizes any progress, they develop a positive attitude
towards special school and education of these children and are motivated to
send the child to school. Nevertheless, if there is any delay in progress, the
parents are not ready to wait and they immediately quit the child from the
school, saying that its waste of time and money. The parents should be
educated enough to carry out the instructions of the special school teachers in
bringing up the child. Since some of the parents have poor educational
qualifications, they are not able to join hands with the special school teachers to
bring about a change in the child and so the progress of the child is delayed
which also have an indirect influence on the level of schooling of the child.

81

TABLE - 19
DISTRIBUTION OF CHILDREN BY THE DEVELOPMENTAL
MILE STONES

S.No
Developmental
milestones
Number of
children
(n: 50)
Percentage
1 Delayed 35 70
2 Normal 15 30
Total 50 100


The table shows the distribution of the children by their developmental
milestones. Majority of the children (70%) had a delayed developmental
milestone and rest of the children (30%) had normal milestones. The children
who had normal developmental milestone were mild retarded. For most of the
children, the delay was obvious when the child did not develop the capacity to
talk. Some children started to talk only at the age of six and till now they are
not able to frame a sentence. Some children started to crawl only by the 8
th

month and started to walk only by the second year.







82

SEXUAL PRACTICES OF INTELLECTUALLY
CHALLENGED ADOLESCENTS
TABLE - 20
DISTRIBUTION OF CHILDREN BY THE ONSET OF PUBERTY
S.No Onset of puberty
Number of children
(n: 50)
Percentage
1 10 - 12 8 16
2 13 - 15 38 76
3 15 & Above 4 8
Total 50 100


The table shows the distribution of children by the onset of puberty.
Majority of the children (76%) attained their puberty by the age of 13 15.
Less than one third of the children (16%) attained puberty by the age of 10 12
and only very few children (8%) attained puberty above the age of 15. The
parents of girls came to know that their child attained menarche through the
menstrual cycle, while the parents of boys came to conclusion that their son
attained puberty through voice break, growth of pubic hair, nocturnal emissions
etc. As of with normal children, the girls attained puberty earlier than boys did.
The growth of secondary sexual characteristics is good in both the genders. The
girls attained menarche between 10 to 14 years and boys attained puberty
above the age of 14.




83

TABLE - 21
DISTRIBUTION OF CHILDREN BY UTERUS REMOVAL
SURGERY

S.No
Uterus removal
operation
Number of
children
(n: 19)
Percentage
1 Yes 11 58
2 No 8 42
Total 19 100


The table shows the distribution of children by uterus removal surgery.
The uterus of the child is removed and more than half of the children (58%)
had undergone uterus removal operation. Rest of the respondents (42%) has not
undergone operations of such kind. The children who have not undergone any
operation are mildly retarded. In most of the cases, the parents removed the
uterus of their child within 6 months of puberty and in some cases, they
removed the uterus after a year of attainment of puberty. The parents consulted
various doctors and finally they had removed the uterus of the child.








84

FIGURE 8
DISTRIBUTION OF CHILDREN BY UTERUS REMOVAL
OPERATION







58%
42%
Yes
No

85

TABLE - 22
DISTRIBUTION OF CHILDREN BY THEIR SEXUAL
BEHAVIORS
S.No Sexual behaviors
Number of children
(n: 50)
Percentage
Boys
1 Touching the genitals 18 36
2 Exposing 9 18
3 Others 4 8
Girls
4 Fondling the breasts 12 24
5 Exposing 4 8
6 Others 3 6
Total 50 100

The table indicates the distribution of children by their sexual behaviors.
Among boys, one third of the children (36%) have the habit of touching the
genitals. less than one third of the children (18%) have the habit of exposing
various body parts, and few children (8%) exhibit other sexual behavior like
refusing to wear dress, moving close with the opposite gender, saying the
names of opposite gender, masturbating, starring at the opposite gender, being
glued in front of the television and if any erotic scenes are telecasted they get
excited and clap their hands and make weird noises. Among girls, less than one
third of the children (24%) have the habit of fondling with the breasts, few
children (8%) have the habit of exposing various parts of the body and very
few children (6%) have other sexual habits mentioned above. Touching the
genitals is one of the most common sexual behaviors observed by the parents.
They try to manipulate the genitals by rubbing them. Masturbation is also
observed in some children. Girls generally try to fondle with their breast and
refuses to wear shawl. Exposing does not literally mean the exposing of genital
organs, but it includes disrobing the shirt or shawl.

86

FIGURE 9A
DISTRIBUTION OF CHILDREN (BOYS) BY THEIR SEXUAL
BEHAVIORS










36
18
8
0
5
10
15
20
25
30
35
40
Touching the genitals Exposing Others
Percentage

87

FIGURE 9B
DISTRIBUTION OF CHILDREN (GIRLS) BY THEIR SEXUAL
BEHAVIORS








24
8
6
0
5
10
15
20
25
30
Fondling the breasts Exposing Others
Percentage

88

TABLE - 23
DISTRIBUTION OF CHILDREN BY THEIR BEHAVIOR OF
SEEKING PRIVACY WHILE USING TOILET/BATHROOM

S.No Seeking privacy
Number of children
(n: 50)
Percentage
1 Yes 22 44
2 No 28 56
Total 50 100


The above table shows the distribution of children by their behavior of
seeking privacy while using toilet/bathroom. More than half of the children
(56%) do not seek privacy while using toilet or bathing and rest of the children
(44%) seek privacy while using toilet or bathing. Most of the children who seek
privacy are mild retarded and they listen to the parents and seek privacy while
excreting or bathing. The rest of the children who seek privacy are the severely
retarded, who are completely taken care of by the parents. These children are
forced to seek privacy. Some of the profound children seek privacy while some
dont seek. The parents also find it difficult to deal with these children while
bathing them within the four walls. The children generally scream if the doors
are closed.






89

TABLE - 24
DISTRIBUTION OF CHILDREN BY THEIR IMPULSE TO
TOUCH THE PRIVATE BODY ORGANS IN PUBLIC

S.No
Touching the private body
organs in public
Number of
children
(n: 50)
Percentage
1 Yes 27 54
2 No 23 46
Total 50 100


The above table shows the distribution of children by their impulse to
touch their private body parts in public. More than half of the children (54%)
have an impulse to touch the private body parts in public. Rest of the children
(46%) does not touch their private body parts in public. More than the girl
children the boys tend to touch their private body parts in public.









90

TABLE - 25
DISTRIBUTION OF CHILDREN BY THEIR BEHAVIORS
DURING MENSTRUAL CYCLE

S.No Common behaviors
Number of children
(n: 19)
Percentage
1 Crying spells 5 26
2 Aggressive behaviors 6 32
3 Adamancy 4 21
4 Autistic behaviors 4 21
Total 19 100


The above table highlights the distribution of children by their behaviors
during menstrual cycle. One third of the children (32%) exhibit aggressive
behavior during the cycle. Less than one third of the children (26%) crying
spells and less than one third of the children (21%) exhibit adamancy and
autistics behavior. The children exhibited autistic behaviors in the form of
continuously tapping the door, waving the hands, whirling around the room,
and repeatedly calling the name of the mother. Most of the children tend to
touch their genitals as the discharge of blood irritates them. They also exhibit
adamant behavior like shouting continuously, refusing to eat, and use abusive
words. During the menstrual cycle, some of the children are very aggressive
and throw all the things that come to their hand. They also tend to hit others
and irritate the siblings.



91

FIGURE 10
DISTRIBUTION OF CHILDREN BY THEIR BEHAVIORS
DURING MENSTRUAL CYCLE





26%
32%
21%
21%
Crying spells
Aggressive behaviors
Adamancy
Autistic behaviors

92

TABLE - 26
DISTRIBUTION OF CHILDREN BY THE HYGIENE
DIFFICULTIES FACED DURING MENSTRUAL CYCLE

S.No Hygiene difficulties
Number of children
(n: 19)
Percentage
1 Yes 12 63
2 No 7 37
Total 19 100

The above table shows the distribution of children by the hygiene
difficulties faced during the menstrual cycle. Majority of the children (63%)
faced hygiene difficulties during menstrual cycle and rest of the children (37%)
does not face any menstrual cycle. The children who did not face any hygiene
difficulties are mild retarded who were able to cope with the menstrual cycle.
Rest of the children and the parents found it difficult to cope with the menstrual
cycle. The children were irritated by the discharge and often start to manipulate
the genitals. They start to play with the sanitary napkins and they see it with a
pride, assuming it as a prized possession. Proper disposal of the sanitary
napkins and cleaning of genitals is a big problem for the child. Whenever the
child gets irritated, she starts to disrobe and throw the sanitary pads wherever
she feels like. The parents find a great difficulty in forcing the child to change
clothes and sanitary pads quite often.





93

TABLE - 27
DISTRIBUTION OF RESPONDENTS BY THE NOCTURNAL
EMISSION BEHAVIOR OF THEIR CHILDREN

S.No Nocturnal emission
Number of respondents
(n: 31)
Percentage
1 Yes 9 29
2 No 17 55
3 Not aware 5 16
Total 31 100


The above table reveals the distribution of respondents by their
nocturnal emission behavior. Half of the respondent (55%) says that their
children do not have nocturnal behaviors and rest of the respondent (29%) says
that their children have nocturnal emission behaviors. One third of the
respondents (16%) were not aware whether their children emitted nocturnal
emission behavior. Some parents have observed their child behave strange
during nights and were restless. The next day they observed nocturnal emission
in their child. They find these behaviors in their child approximately once in 15
days.







94

TABLE - 28
DISTRIBUTION OF CHILDREN WHO GETS EXCITED WHEN
BEING WITH THE OPPOSITE GENDER

S.No
Excitement when being with
the opposite gender
Number of
children
(n: 50)
Percentage
1 Yes 32 64
2 No 28 56
Total 50 100


The above table indicates the distribution of children who gets excited
when being with the opposite gender. Majority of the children (64%) get
excited when they are with the opposite gender and half of the children (56%)
do not get excited when they are with the opposite gender. When they are with
the opposite gender, they exhibit various behaviors like clapping hands, making
weird noises, shouting at the top of the voice and become hyperactive active. If
they are forcefully removed from the situation they exhibit crying spells,
aggressive behaviors and even go to the extent of self injury.







95

TABLE - 29
DISTRIBUTION OF CHILDREN WHO EXHIBITS SEXUAL
BEHAVIORS TOWARDS OPPOSITE GENDER SIBLINGS

S.No
Sexual behaviors towards
siblings
Number of
children
(n: 50)
Percentage
1 Yes 6 12
2 No 44 88
Total 50 100


The above table shows the distribution of children who exhibits sexual
behavior towards opposite gender siblings. Vast majority of the children (88%)
do not exhibit any sexual behavior towards the opposite gender sibling while
less than one third of the children (12%) exhibit sexual behavior towards the
siblings. In this situation, the opposite gender siblings are advised and educated
about the intellectually challenged children and are asked to maintain a
physical distance when moving with them. Even in some families the opposite
gender siblings are placed in hostel to avoid any problems. But in certain cases
the children exhibit sexual behaviors like starring at them, often touch them
when talking, exposing the body organs etc towards the opposite gender
sibling.





96

TABLE - 30
DISTRIBUTION OF CHILDREN WHO EXHIBITS SEXUAL
BEHAVIORS TOWARDS REALTIVES OF THE SAME AGE

S.No
Sexual behaviors towards
relatives
Number of
children
(n: 50)
Percentage
1 Yes 12 24
2 No 38 76
Total 50 100


The above table shows the distribution of children who exhibits sexual
behavior towards the relatives of the same age. Majority of the children (76%)
do not exhibit any sexual behavior towards the relatives of same age and rest of
the children (12%) exhibit sexual behavior towards the relatives of the same
age. The parents say that they can control their own siblings and not other
children. The other children enjoy the company of being with the intellectually
challenged child and the parents complain that when the child is with the
relatives of the same gender, the child watches erotic scenes in television, and
often touches them while talking. As both the children are of the same age, the
parents really find it difficult to control them. Another fact is that, parents are
not able to explain to others about the childs behavior. They find it difficult to
educate them and ask them to warn their child to maintain physical distance
with the intellectually challenged children. They fear that when they explain
about the childs behavior to others, they may mistake the child.



97

TABLE - 31
DISTRIBUTION OF CHILDREN WHO GETS AROUSED BY ANY
SEXUAL ACTS IN PICTURES OR MOVIES

S.No
Aroused by sexual acts in
movies
Number of
children
(n: 50)
Percentage
1 Yes 39 78
2 No 11 22
Total 50 100

The above table shows the distribution of children who gets aroused by
any sexual acts in pictures or movies. Majority of the children (78%) get
aroused by any sexual act in the movie or picture and rest of the children (22%)
do not get aroused by any sexual acts in pictures or movies. This is so because
most of the children are dropped from special school and sit in the home idly
and they are often exposed to the television. The parents are also comfortable
and find it easy to control their child, because when the child starts to see
television they are glued to it and do not disturb the parents. The children
exhibit sexual acts by kissing their favorite actor and actress, clapping their
hands and try to imitate those sexual acts with the parents or the siblings.
Again, if the parents forcefully remove them from that situation they exhibited
crying spells and ends up in self-injury.




98

TABLE - 32
DISTRIBUTION OF CHILDREN WHO EXHIBITS
INAPPROPRIATE SEXUAL BEHAVIOR IN PUBLIC
S.No Inappropriate sexual
behaviors in public
Number of
children
(n: 50)
Percentage
1 Yes 38 76
2 No 12 24
Total 50 100


The above table shows the distribution of children who exhibits
inappropriate sexual behavior in public. Majority of the children (76%) exhibit
inappropriate sexual behavior in public and rest of the children (24%) do not
exhibit any such behaviors in public. The children who did not exhibit any such
behaviors are severely retarded children who get only limited exposure to
public places.









99

TABLE - 33
DISTRIBUTION OF CHILDREN BY THEIR KINDS OF
INAPPROPRIATE SEXUAL BEHAVIOR

S.No Kinds of Inappropriate
behavior
Number of
children
(n: 50)
Percentage

Boys

1 Touching the genitals 10 20
2 Exposing 3 6
3 Playing with the opposite gender 4 8
4 Others 5 10
5 No such behaviors 9 18

Girls

1 Fondling with breasts 3 6
2 Exposing 2 4
3 Playing with the opposite gender 7 14
4 Others 4 8
5 No such behaviors 3 6
Total 50 100


The above table indicates the kinds of inappropriate sexual behaviors
exhibited by the children at public places. Among boys less than one third of
the children (20%) touch their genitals, 18% of the children do not exhibit any
behavior, few children (10%) exhibit other behaviors, very few children (8%)
play with the opposite gender, and very few (6%) expose their body organs.
Among girls, less than one third of the children (14%) play with the opposite
gender, few children (8%) exhibit other behaviors, very few children (6%)
fondle their breasts, 6% of them do not exhibit any such behavior, and 4% of
them expose their body parts. The other behaviors include making weird

100

noises, shouting at the top of the voices, and call them by names. Many of the
children play with the opposite gender by grabbing their hands and laugh at
them, sings loudly to seek the attention of the opposite gender and pinch them.
In some extreme cases, they fight with the mother to bring the girl or boy home
along with them. Children who did not exhibit such behaviors are those who
are severely retarded and are confined within the four walls. The children who
are mildly retarded also do not exhibit any such behavior, as they understand
that their parents might scold them and it is wrong to do so.
















101


FIGURE 11A
DISTRIBUTION OF CHILDREN (BOYS) BY THEIR KINDS OF
INAPPROPRIATE SEXUAL BEHAVIOR IN PUBLIC






20%
6%
8%
10%
18%
Touching the genitals
Exposing
Playing with the opposite
gender
Others
No such behaviors

102

FIGURE 11B
DISTRIBUTION OF CHILDREN (GIRLS) BY THEIR KINDS OF
INAPPROPRIATE SEXUAL BEHAVIOR IN PUBLIC







6%
4%
14%
8%
6%
Fondling with breasts
Exposing
Playing with the opposite
gender
others
No such behaviors

103

TABLE - 34
DISTRIBUTION OF RESPONDENTS BY THE RULES OF
SEXUALITY

S.No Rules of sexuality
Number of respondents
(n: 50)
Percentage
1 Yes 47 94
2 No 3 6
Total 50 100

The above table reveals the distribution of respondents by the rules of
sexuality. Vast majority of the respondents (94%) have laid rules of sexuality
towards their children and rest of the respondents (6%) have not laid any rules
of sexuality towards the children. The general rules laid by the parents are:
1. Do not touch the genitals. Only bad boys and girls do that.
2. You should not disrobe the dress in front of others.
3. Do not touch the opposite gender.
4. When bathing close the doors.
Sometimes the parents threaten the children by saying that if they often touch
the genitals, they may lose it or if they move close with the opposite gender,
the boy or the girl may cut their genitals. Some parents have not laid any rules
of sexuality as they think that its natural for a child to manipulate genitals and
they had a misconception that these rules will not be understood by the
children.



104

TABLE - 35
DISTRIBUTION OF CHILDREN BY THEIR RESPONSE TO
COPE WITH RULES OF SEXUALITY

S.No Coping behavior
Number of children
(n: 50)
Percentage
1 Crying 11 22
2 Self injury 7 14
3 Aggressive behaviors 11 22
4 Adjust 10 20
5 Adamant 6 12
6 Others 5 10
Total 50 100

The above table indicates the distribution of children by their response
to cope with rules of sexuality. Less than one third of the children (22%)
exhibits crying spells and aggressive behaviors, 20% of the children adjust and
cope with the rules of sexuality, less than one third of the children (14%)
exhibit self injury behaviors, 12% of the children are very adamant and few
children (10%) exhibit other behaviors. Self-injury behaviors include hitting
their heads, biting their tongue and scratching them.





105

ATTITUDE OF PARENTS TOWARDS THE SEXUALITY
OF THEIR CHILDREN
TABLE - 36
DISTRIBUTION OF RESPONDENTS BY THEIR REACTION
TOWARDS THE ATTAINMENT OF PUBERTY OF THEIR
CHILDREN
S.No Reaction to puberty
Number of respondents
(n: 50)
Percentage
1 Worried 10 20
2 Fearful 8 16
3 Depressed 10 20
4 Angry 13 26
5 shocked 5 10
6 Adjust and cope 4 8
Total 50 100

The above table highlights the distribution of respondents by their
reaction towards the attainment of puberty of their children. Less than one third
of the respondents (26%) are angry towards God, 20% of the respondents are
depressed and worried, less than one third of the respondents (16%) are fearful,
few respondents (10%) are in a state of shock, and very few respondents (8%)
adjust and cope to the onset of puberty. Many parents have a fear about the
future of the child and the parent of girl child feared about protecting the child.
Some parents were shocked as they dint expect the onset of puberty. Since the
developmental milestones were delayed, the parents had a misconception that
the children will be reproductively inactive.



106

FIGURE 12
DISTRIBUTION OF RESPONDENTS BY THEIR REACTION
TOWARDS THE ATTAINMENT OF PUBERTY OF THEIR
CHILDREN





20
16
20
26
10
8
0
5
10
15
20
25
30
Worried Fearful Depressed Angry shocked Adjust and
cope
Percentage

107

TABLE - 37
DISTRIBUTION OF RESPONDENTS BY THEIR LEVEL OF
ACCEPTANCE THAT THEIR CHILD IS SEXUALLY ACTIVE

S.No
Acceptance of childs
sexuality
Number of
respondents
(n: 50)
Percentage
1 Yes 19 38
2 No 31 62
Total 50 100

The above table shows the distribution of respondents by their level of
acceptance that their child is sexually active. Majority of the respondents (62%)
disagreed that their child is sexually active like the other children and rest of
the respondents (38%) agreed that their child is sexually active. Though the
parents are aware of various sexual behaviors exhibited by the children, they
still console themselves by arguing that the behaviors exhibited by the child are
not literally sexual. The parents are ignorant that hormones and the biological
reactions are normal for an intellectual child like other children. They believe
that their children are asexual.








108

TABLE - 38
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS REMOVING THE UTERUS OF THE CHILD

S.No Attitude
Number of respondents
(n: 50)
Percentage
1 Necessary 40 80
2 Not necessary 10 20
Total 50 100


The above table highlights the distribution of respondents by their
attitude towards removing the uterus of their child. Majority of the respondents
(80%) are of the opinion that it is necessary to remove the uterus of the child
and rest of the respondents (20%) is of the opinion that it is not necessary to
remove the uterus of the child. The parents, who feel that it is not necessary to
remove the uterus of their child, had mild retarded children and they did not
face any difficulty with the child. Most of the parents are unable to cope with
the child during the menstrual cycle and fear for unwanted pregnancies.







109

TABLE - 39
DISTRIBUTION OF RESPONDENTS BY THE REASON FOR
REMOVING UTERUS OF THEIR CHILD

S.No
Reasons for removal of
uterus
Number of
respondents
(n: 50)
Percentage
1
Unable to cope with menstrual
hygiene

41

82
2
To prevent unwanted
pregnancies

9

18
Total 50 100

The above table reveals the distribution of respondents by the reason for
removing the uterus of the child. Majority of the respondents (82%) removed
the uterus of their child due to the reason that the child is not able to cope with
the menstrual hygiene. Less than one third of the respondents (18%) removed
the uterus of the child to avoid any unwanted pregnancies. This is a silent cry
for most of the parents, where they fear the sexual abuse of their child.








110

TABLE - 40
DISTRIBUTION OF RESPONDENTS ACCORDING TO THEIR
REACTION WHEN THE CHILD IS INTERESTED IN THE
OPPOSITE SEX

S.No
Reaction when the child is
interested in opposite gender
Number of
respondents
(n: 50)
Percentage
1 Worried 16 32
2 Fearful 11 22
3 Depressed 10 20
4 Angry 13 26
Total 50 100


The above table shows the distribution of respondents according to their
reaction when the child interested in the opposite gender. One third of the
respondents (32%) were worried about the childs behavior, less than one third
of the respondents (26%) were angry, 22% of the respondents were fearful and
20% of them were depressed. The parents were confused as how to modify
these behaviors. The parents were depressed when other people complain about
the child.







111

TABLE - 41
DISTRIBUTION OF RESPONDENTS WHO WORRY THAT
OTHERS MAY MISUNDERSTAND THE CHILDS BEHAVIOR

S.No Worry about others
Number of respondents
(n: 50)
Percentage
1 Yes 31 62
2 No 19 38
Total 50 100


The above table shows the distribution of respondents who worry that
others may misunderstands the childs behavior as having sexual content when
not intended. Majority of the respondents (62%) worry that others may
misunderstand their child as having sexual content when not intended and one
third of the respondents (38%) do not worry about others.










112

TABLE - 42
DISTRIBUTION OF RESPONDENTS BY THEIR REACTION
TOWARDS CHILDS INAPPROPRIATE SEXUAL BEHAVIOR IN
PUBLIC

S.No
Reaction when the child
exhibits inappropriate
behavior
Number of
respondents
(n: 50)
Percentage
1 Worried 13 26
2 Fearful 7 14
3 Depressed 12 24
4 Angry 18 36
Total 50 100


The above table indicates the distribution of respondents by their
reaction towards childs inappropriate sexual behavior in public. More than one
third of the respondents (36%) were angry towards the child inappropriate
behavior, less than one third of the respondents (26%) worries about the childs
behavior, 24% of the respondents are depressed, and less than one third of the
respondents (14%) are fearful towards the childs inappropriate behavior.






113

TABLE - 43
DISTRIBUTION OF RESPONDENTS ACCORDING TO THEIR
METHOD OF MODIFYING THE INAPPROPRIATE BEHAVIOR

S.No
Modify the sexual
behavior
Number of
respondents
(n: 50)
Percentage
1 Beat 24 48
2 Shout at them 12 24
3 Divert their attention 5 10
4 Advice 9 18
Total 50 100


The above table indicates the distribution of respondents according to
their method of modifying the inappropriate behavior. Less than half of the
respondents (48%) beat their children when they exhibit inappropriate
behavior, less than one third of the respondents (24%) shout at their children,
18% of the respondents advice their children and few respondents (10%) divert
their attention. They divert the attention of the child by engaging them in
knitting, making them sing, recite slogans, and engage them in drawings.
Advices are given to the child who is mild retarded as they are able to
understand the content of the advice.





114

FIGURE 13
DISTRIBUTION OF RESPONDENTS ACCORDING TO THEIR
METHOD OF MODIFYING THE INAPPROPRIATE BEHAVIOR






48%
24%
10%
18%
Beat
Shout at them
Divert their attention
Advice

115

TABLE - 44
DISTRIBUTION OF SEXUALLY ABUSED CHILDREN

S.No Sexual abused
Number of children
(n: 50)
Percentage
1 Yes 6 12
2 No 44 88
Total 50 100


The above table shows the distribution of sexually abused children.
Vast majority of the children (88%) were not sexually abused and rest of the
children (12%) were sexually abused. Though the majority of the children were
not sexually abused but still there is a silent fear among the parents. If we
analyze the gender of the sexually abused child, two male children and four
female children has been abused. This was a great shock to the parents to know
that their male child has been sexually abused.









116


FIGURE 14
DISTRIBUTION OF SEXUALLY ABUSED CHILDREN








12%
88%
Yes
No

117

TABLE - 45
DISTRIBUTION OF CHILDREN ACCORDING TO THE
DETAILS OF SEXUAL ABUSE
S.No Sexually abused
Number of respondents
(n: 6)
Percentage
Whom
1 Family member 2 33
2 Outside the family 4 67
Where
1 Home 4 67
2 Work place 2 33
When
1 A year before 3 50
2 Recently 3 50

The above table shows the distribution of children according to the
details of sexual abuse. Members outside the family who include shop owners
and neighbors abused 67% of the children. Family members abused 33% of the
children and they include the relatives. 67% of the children were abused in
home, when the parents were not there and 33% of the children were abused at
work place. Half the abuse took place a year before and half the abuse took
place recently. Most of the abused children were moderately retarded. The
main reason is that they at times of emergency they are left alone in the house
and they are also sent to work in shops as vocational programme. Therefore,
there are greater chances for abuse of the child.



118

TABLE - 46
DISTRIBUTION OF RESPONDENTS BY THEIR SOURCE OF
INFORMATION ABOUT SEXUAL ABUSE OF THE CHILD

S.No Source of information
Number of respondents
(n: 6)
Percentage
1 Through the child 4 67
2 Through parents themselves

2

33
Total 6 100


The above table shows the distribution of respondents by their source of
information about sexual abuse of the child. Majority of the respondents (67%)
came to know about the abuse, through the child. The child hesitated to go to
work and when the child was forced to go to work, it exhibited aggressive
behavior. The child also refused to move with the particular person who abused
the child and started to shout and make weird noises when being with that
person. Rest of the respondent (33%) came to know about the abuse by their
own self. Some of the abusers were caught red handed by the parents. Some
children experienced night mares and started to shout and cry at mid night.
Knowing about the abuse of the child is the biggest problem for the parents and
because of this the parents are confined to the four walls and live in a
boundary, avoiding all in order to keep the child protected.




119

TABLE - 47
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS THE MARRIAGE OF THEIR CHILD

S.No Ability to marry
Number of respondents
(n: 50)
Percentage
1 Yes 12 24
2 No 34 68
3 No idea 4 8
Total 50 100


The above table shows the distribution of respondents by their attitude
towards marriage of their child. Majority of the respondents (68%) were clear
that their children cannot get married. Less than one third of the respondents
(24%) believed that their child as the ability to marriage and few respondents
(8%) of the did not have any idea. The parents, who believed that their child
can get married, are the parents of mild retarded. Though some of the parents
are bold enough, they become depressed and worried when they think about the
marriage of the child. Parents had mixed emotions about the marriage of the
child. They want their child to get married but at the same time worry about the
marital conflict and the sexual ability of the child.






120

FIGURE 15
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS THE MARRIAGE OF THEIR CHILD








24
68
8
0
10
20
30
40
50
60
70
80
Yes No No idea
Percentage

121

TABLE - 48
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS THE FUTURE OF THEIR CHILD

S.No Worry about future
Number of respondents
(n: 50)
Percentage
1 Yes 42 84
2 No 8 16
Total 50 100


The above table reveals the distribution of respondents by their attitude
towards the future of the child. Vast majority of the respondent (84%) said that
they worried about the future of the child. Rest of the respondent (16%) said
they wont worry about the future of the child. The one did not worry about the
future of the child were parents of mild retarded children and who lived in joint
families. They were happy that after their life time there was someone to take
care of the child. But the rest of the parents worried about the future of the
child and the severity of the disease as they lived in nuclear family. They had
no one to discuss about the childs situation or to gain advice about taking
remedial steps.






122

FIGURE 16
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS THE FUTURE OF THEIR CHILD






84%
16%
Percentage
Yes
No

123

ATTITUDE OF PARENTS TOWARDS THE SEX
EDUCATION OF THE INTELLECTUALLY
CHALLENGED CHILDREN
TABLE - 49
DISTRIBUTION OF RESPONDENTS BY THEIR ATTITUDE
TOWARDS SEX EDUCATION FOR THEIR CHILDREN

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 40 80
2 No 10 20
Total 50 100


The above table shows the distribution of respondents by their attitude
towards sex education for their children. Vast majority of the respondent
(80%) were of the opinion that special schools should impart sex education to
these children. Rest of the respondent (20%) disagreed that there is no need for
sex education in special school. They argued that their son/daughter is still a
child and these sex related information may pollute the child. Further they
added that, after the birth of these intellectually challenged children the
mothers are with the child for most of the time and they very rarely step
outside the house. So the mothers themselves will teach what the child needs
to know. They believe that the work of special schools is to train the students in
educational and vocational aspects alone.



124

TABLE - 50
DISTRIBUTION OF RESPONDENTS BY THEIR OPINION
TOWARDS IMPARTING EDUCATION ON APPROPRIATE
EXPRESSION OF SEXUAL BEHAVIORS

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 41 82
2 No 9 18
Total 50 100


The above table indicates the distribution of respondents by their
opinion towards imparting education on appropriate expression of sexual
behaviors. Vast majority of the respondent (82%) are of the opinion that special
schools must impart information about appropriate expression of sexual
behaviors and rest of the respondents (18%) was of the opinion that there is no
need to impart information about sexual behaviors. These respondents have a
poor educational background and argue that whenever a child does mistakes we
are there to correct the child.







125

TABLE - 51
DISTRIBUTION OF RESPONDENTS BY THEIR OPINION
TOWARDS IMPARTING EDUCATION ON BODY ORGANS

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 18 36
2 No 32 64
Total 50 100


The above table shows the distribution of respondents by their opinion
towards imparting education on body organs. Majority of the respondents
(64%) were of the opinion that there is no need for imparting education on
body organs rest of the respondents (36%) were of the opinion that there is a
need for imparting education on body organs. The respondents feel that there is
no purpose for the child to learn about the body organs and they fear that when
the child learns the name of body organs they may utter these names in public
which will add to the problem.







126

TABLE - 52
DISTRIBUTION OF RESPONDENTS BY THEIR OPINION
TOWARDS IMPARTING EDUCATION ON MENSTRUAL
HYGIENE

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 31 62
2 No 19 38
Total 50 100


The above table shows the distribution of respondents by their opinion
towards imparting education on menstrual hygiene. Majority of the respondents
(62%) were of the opinion that special schools must impart information about
menstrual hygiene and rest of the respondents (38%) was of the opinion that
there is no need to impart education on menstrual hygiene. They believe that
when removing the uterus is the best option for the child, there is no need for
the special schools to impart education on menstrual hygiene.







127

TABLE - 53
DISTRIBUTION OF RESPONDENTS BY THEIR OPINION
TOWARDS IMPARTING EDUCATION ON SEXUAL ABUSE

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 43 86
2 No 7 14
Total 50 100


The above table shows the distribution of respondents by their opinion
toward imparting education on sexual abuse. Vast majority of the respondents
(86%) were of the opinion that special schools should impart education on
sexual abuse and rest of the respondents (14%) were of the opinion that there is
no need for imparting education on sexual abuse.











128

TABLE - 54
DISTRIBUTION OF RESPONDENTS BY THEIR OPINION
TOWARDS IMPARTING EDUCATION ON REPORTING ABOUT
SEXUAL ABUSE

S.No Sex education
Number of respondents
(n: 50)
Percentage
1 Yes 43 86
2 No 7 14
Total 50 100


The above table indicates the distribution of respondents by their
opinion towards imparting education on reporting about sexual abuse. Vast
majority of the respondents (86%) were of the opinion that special schools
should impart education about reporting about sexual abuse and rest of the
respondent (14%) were of the opinion that there is no need for imparting
education on reporting about sexual abuse. They argued that the chances for
sexual abuse of these children are very less and so it is not necessary for the
special school to impart such education.









129

CHAPTER V
CASE STUDY
Mr. X of age 17, belonging to Hindu religion is presented with the complaints
of
1. Moderate mental retardation
2. Aggressive behaviors
3. Inappropriate sexual behavior in public
4. Adamancy
5. Being glued to Television
6. Victim of sexual abuse.
When Mr. X was born there was so much of happiness in the family as
he was the first male child in the family. The whole family was thrilled and
filled with excitement as they watch the child grow. But after five months, the
parents observed certain changes in the child. The head fix which usually
happens by the fifth month in children, did not happen in the case of Mr. X.
The other developmental milestones were also delayed. The child tried to crawl
only by the 8
th
month. These delayed developmental milestones induced a fear
in the parents. But still they waited with a hope. But everything turned upside
down when the child reached the age of 5. Though the child was 5 years old,
the speech was delayed and the child was not able to talk properly. Worried,
the parents took the child to the medical professionals where they diagnosed
the child as moderate mentally retarded.
It was a great shock to the parents. They never expected such a sudden
turn in their life. That day was the black day in our family. When the doctors
told us that our child is mentally retarded we couldnt believe our ears. There
was a great denial. We were shattered. We felt like being lost in the midst of a
dark forest, not knowing where to go. Though it was a great shock to the
parents, still they accepted the child. With the advice of various professionals
and experts they placed the child in special school by the age of 6. It was a

130

sense of relief to the parents, that their child can learn something at least to do
things on his own.
Everything was fine until the child reached the age of puberty. The
child, as per the parents observation attained puberty by the age of 13. The
parents concluded that their child reached the age of puberty through the
growth of pubic hairs and voice break. It was a shock to the parents, were they
thought that the child is asexual. We never expected our child to be sexual.
When his intelligent quotient is poor, we thought he would be asexual devoid
of all sexual feelings. But when we slowly started to observe the physical
changes, in our child we started to develop fear. As expected, and as far as to
our knowledge, the child attained puberty by the age of 13. Depressed, worried,
denial and mixed emotions were our reaction to this physical change.
With the onset of puberty, there was onset of problems too. The first
change noted by the parents is that, whenever the child saw television the child
was excited and in particular, the child exhibited weird behaviors when erotic
scenes were telecasted. This was first taken in a light sense by the parents. He
used to wave his hands, dance and make weird noises when seeing such scenes.
But we took it in a lighter sense. The parents later noted various sexual
behaviors in the child like exposing various body organs, touching the genitals,
repeatedly saying girls names, kissing girls picture in television. These sexual
behaviors threatened the parents and in order to divert the child the parents
often took the child to public places. But there too the parents faced problems.
The boy when being in public places began to react weird when seeing girls.
Whenever the boy sees any girls he runs to them and holds their hands and
laugh.
Problems were made for us..We suppose. We thought to divert the
attention of the child and took him to various public places. But there too he
started to exhibit inappropriate sexual behavior. He started to touch his
genitals, make wired noised to gain the attention of the opposite gender and
when they look back at him, he smiles. He runs to the girl and holds her hands

131

and starts to sing. Disgusting! We are from an orthodox family and cannot
permit such behaviors, on the excuse that our child is mentally retarded.
One day the boy behaved strange at night and started to behave
aggressively. He also engaged in self injury. He started to bang his head
against the door for a minute and suddenly there was a complete shift in his
emotion and he became extremely happy. He started to dance and sing. We
were happy to see him happy. But we later realized the reason for his strange
behaviors. Our child has experienced nocturnal emission. Alas! What more?
Our total life is in fix now. Feels Depressed.
The parents started to feel more stress in handling the child. The worst
among all the behaviors was that the child started to exhibit the inappropriate
behavior towards the mother. He used to come and sit near me and look at my
face for a while and slowly lifts my saree till my ankle and first touches my
anklets and later keep caressing my leg. I gave him left and right. After few
minutes he came to me and asks sorry. He repeated the same behavior again
and I gave him nicely. Because of my behavior he is now refusing to move
with me. He started to develop fear towards me. I feel like dying (Crying). My
own son is exhibiting inappropriate behavior towards me. There could be no
more a worst punishment than this.
Not only the parents suffered problems but the boy also suffered
problems from other. The child was sexually abused by his shop owner. In
order to train the child, the parents sent the child to work in a telephone booth.
In the special school they have trained my child in vocational aspects. In order
to practice what they have thought we sent our child to work in telephone
booth. Initially the owner of the shop was very nice to our child. But later one
day he has forced our child for sexual acts. Our child has shouted but the owner
has threatened him by saying that if he says this to any one he will kill him.
From the next day our child refused to go to work and was very nervous.
During night time our child shouted out of fear. He started to shout
knifeknife After a week when we went out for shopping we saw the

132

shop owner there and our child started to shout. The owner on seeing us fled
the place. There we had a doubt and caught the owner and threatened him and
later he accepted the fault. Why these are happening to us? Our child whom we
love a lot has suffered so much and we were not aware of it. Feeling very
guilty.
The trainee could sense the pain behind every sentence. The trainee told
the parents that it is difficult to bring up such a child. But it is still the duty of
the parents to teach the child about appropriate sexual behavior. Trainee
advised the parents to adopt role playing to teach appropriate sexual behavior.
The trainee also counseled the parents to be relaxed and accept the child as he
is. Only acceptance will make us modify the childs behavior and mould them.
The trainee also asked the parents to adopt positive reinforcement. Whenever
the child exhibited appropriate sexual behavior, the parents have to provide the
child with what the child desires for. The trainee also asked the parents to teach
the concept of public and private places and where to exhibit appropriate
behaviors. The trainee further added to convey these behavior of the child to
the head of the special school and to seek their advise for molding the behavior
of the child.













133

DISCUSSION WITH PARENTS

Things have changed from the past, where the parents thought their
intellectually challenged children as asexual. Now there is a realization on the
part of the parents that their children are sexually active too. When the
researcher went for data collection there was a great response from the parents,
who used this opportunity not only to provide information to the researcher
about the sexual practices of the intellectually challenged children but to
ventilate their feelings about the sexuality of these children.

There is a real pain and sadness behind every response they gave and the
researcher could feel that. Most of the parents literally broke down and they
were in tears when explaining the behaviors of these children. Because of the
sexual behavior of these children the other sibling in the family are placed in
hostel. He always used to go and sit near her and hold her shawl. Initially we
thought it was a mere affection towards the sister. But later he started to behave
adamantly when he was refused to do so. When the sister sleeps, he used to sit
near her and just hold her feet. This is very disgusting and she too felt bad.
Because of this we have placed her in hostel. We terribly feel bad. God, who
has given him no or little intelligence, could have even made in asexual. But
why ?. This was the statement of a mother of 18 year old boy.

When the researcher was discussing about uterus removal operation of
the intellectually challenged children, it was found that nearly majority of them
have gone for removal of uterus. This can be seen from two perspectives.

1. Denial of the rights of girl for motherhood
Or
2. Inability to cope with menstrual hygiene.


134

Most of the parents said it was due to menstrual hygiene but there was a under
pinned fear of sexual abuse among the parents. More than the rights of
becoming mothers, we need to protect them said many of the parents. We
find it difficult to cope during menstrual cycle. If she is aggressive during that
period she starts to abuse others and hit herself. She thinks it to be a matter of
pride and reveals about her menstrual cycle to others. This was the plight of a
mother of 15 year old child.

We never knew these children are sexually active like the other child
until we observed the nocturnal emission in our child says a father. Initially
we thought it was due to full moon day he was behaving aggressive and
consoled him and gave sleeping dose to calm him. But the very next day we
observed nocturnal emission in our child. This was a great shock to us. No it
should not happen to our child was our first cry. Then after he started to touch
his genitals in public and make weird noises at girls. The father broke down
when he was discussing the issue with researcher.

Sexual abuse is yet another problem faced by the intellectually
challenged children. Till that day we were happy with our child. But one day
suddenly she became full of rage and started to shout. We couldnt understand
whats happening. After a few minutes she fainted. This has happened for more
than 3 to 4 times. One day when I was bathing her I could find some bruises in
her body which kindled suspicion in my mind and asked my daughter. She
uttered the name of our relative and started to shout (in her own language as
she has speech difficulty). We then realized what would have happened. We
called that particular person and warned him. We couldnt digest and see the
plight of our daughter

The parents used this opportunity to ventilate and the researcher came to
know the practical problems faced by the parents and the intellectually
challenged children in term of sexuality and this has created a sense of social
responsibility within the researcher to take measure to alleviate the pain of the
parents.

135

CHAPTER VI
FINDINGS, SUGGESTIONS AND CONCLUSION
MAJOR FINDINGS
Findings related to Demographic profile of the Informants
1. Majority of the respondents (60%) are mothers.
2. Half of the respondents (52%) fall in the age group of
30 39.
3. Less than half of the respondents (40%) have completed their UG.
4. More than one third of the respondents (38%) are self employed.
5. More than one third of the respondents (36%) fall in the income level
of 10,001 15,000.
6. Majority half of the respondents (62%) fall in the category of
consanguineous marriage
7. More than half of the respondents (58%) have less than two children.
8. More than half of the respondents (56%) live in nuclear family.
9. Majority of the respondents (68%) are from urban areas.
10. Less than half of the respondents (44%) were Hindus.
11. Majority of the respondents (64%) had a history of mental
retardation in the family.
Findings related to Demographic profile of the intellectually
challenged adolescents
12. More than half of the children (56%) fall in the age category of
17 19.
13. Majority of the children (62%) are boys.
14. Half of the respondents (52%) came to know about the disability of
the child only during 4 6 years of the child.
15. Less than half of the children (46%) were first born
16. Less than half of the children (48%) are moderately disabled.

136

17. Less than half of the children (42%) suffer from speech disorder.
18. One third of the children (34%) went to special school for 3 to 5
years.
19. Majority of the children (70%) had a delayed developmental
milestone and less than half of the children.
Findings related to Sexual practices of intellectually challenged
adolescents
20. Majority of the children (76%) attained their puberty by the age of
13 15.
21. The uterus of the child is removed and more than half of the children
(58%) had undergone uterus removal operation.
22. Among boys, more than one third of the children (36%) have the
habit of touching the genitals. Among girls, less than one third of the
children (24%) have the habit of fondling with the breasts.
23. More than half of the children (56%) do not seek privacy while using
toilet or bathing.
24. More than half of the children (54%) have an impulse to touch the
private body parts in public.
25. One third of the children (32%) exhibit aggressive behavior during
the cycle.
26. Majority of the children (63%) face hygiene difficulties during
menstrual cycle.
27. More than half of the respondent (55%) says that their children do
not have nocturnal behaviors.
28. Majority of the children (64%) get excited when they are with the
opposite gender.
29. Vast majority of the children (88%) do not exhibit any sexual
behavior towards the opposite gender sibling.
30. Majority of the children (76%) do not exhibit any sexual behavior
towards the relatives of same age.

137

31. Majority of the children (78%) get aroused by any sexual act in the
movie or picture.
32. Majority of the children (76%) exhibit inappropriate sexual behavior
in public.
33. Among boys less than one third of the children (20%) touch their
genitals and in girls less than one third of the children (14%) play
with the opposite gender.
34. Vast majority of the respondents (94%) have laid rules of sexuality
towards their children.
35. Less than one third of the children (22%) exhibit crying spells and
aggressive behaviors to rules of sexuality.
Findings related to Attitude of parents towards the sexuality of their
children
36. Less than one third of the respondents (26%) are angry on the
puberty of their children.
37. Majority of the respondents (62%) disagreed that their child is
sexually active like the other children.
38. Majority of the respondents (80%) are of the opinion that it is
necessary to remove the uterus of the child.
39. Vast majority of the respondents (82%) removed the uterus of their
child due to the reason that the child is not able to cope with the
menstrual hygiene.
40. One third of the respondents (32%) were worried about when the
child exhibits interest in the opposite gender.
41. Majority of the of the respondents (62%) worry that others may
misunderstand their child.
42. One third of the respondents (36%) were angry towards the child
inappropriate behavior.
43. Less than half of the respondents (48%) beat their children to modify
the inappropriate sexual behaviors.

138

44. Vast majority of the children (88%) were not sexually abused.
45. Members outside the family who include shop owners and neighbors
abused 67% of the children.
46. Majority of the respondents (67%) came to know about the abuse,
through the child.
47. Majority of the respondents (68%) were clear that their children
cannot get married.
48. Vast majority of the respondent (84%) said that they worried about
the future of the child.
Findings related to Attitude of parents towards the sex education of
the intellectually challenged children
49. Vast majority of the respondent (80%) that special schools should
impart sex education to these children.
50. Vast majority of the respondent (82%) are of the opinion that special
schools must impart information about appropriate expression of
sexual behaviors.
51. Majority of the respondents (64%) were of the opinion that there is
no need for imparting education on body organs.
52. Majority of the respondents (62%) were of the opinion that special
schools must impart information about menstrual hygiene.
53. Vast majority of the respondents (86%) were of the opinion that
special schools should impart education on sexual abuse.
54. Vast majority of the respondents (86%) were of the opinion that
special schools should impart education about reporting about sexual
abuse.




139

DISCUSSIONS
Stereotypical notions about disabled people have been institutionalized
throughout society (Oliver 1996:33) and persons with intellectual disabilities
are considered as lacking the capacity to responsibly and appropriately give
expression to their sexuality needs (Milligan & Nuefeldt, 2001:92). Matters of
sexuality have historically been either ignored or actively suppressed for
persons with intellectual disabilities, while they are socially pressurized to
adopt a non-sexual lifestyle where their sexual needs are deemed to be absent
or subjugated. Disabled people have had to contend with social, cultural, and
medical denial of their sexuality.

The researcher has studied the sexuality of the intellectually challenged
adolescents and came out with certain findings. A comparison of the findings
of the present study with previous literature would give an idea about whether
things have changed or still the issue remains the same.

The study shows that 32% of the respondents exhibit aggressive
behaviors during menstrual period and this result corresponds to the findings of
Elkins and coworkers (1985) who conducted a research on A model clinic
approach to the reproductive health concerns of the mentally handicapped. In
the research he has stated that 32% of premenstrual syndrome includes
aggressive behaviors.

The findings of the study reveal that 63% of the children face hygiene
difficulties. This correspondence with the findings of Chamberlain and
coworkers (1984) - Issues in fertility for mentally retarded female adolescents:
I. Sexual Activity, sexual Abuse, and contraception. He reported that 55% of
the moderately retarded adolescents face hygiene difficulties.

The study shows that 64% of the children get excited when being with
the opposite gender. This corresponds to the findings of Pueschel and Scola

140

(1988) - Parents perception of social and sexual functions in adolescents with
intellectual disability. The findings of the study shows that that over half the
teenagers had expressed an interest in the opposite sex (sample size being 70).

The researcher came out with the finding that 12% of the children were
sexually abused. The findings correspond with the study of Lindsay (1994) -
Client attitudes towards relationships: Changes following a sex education
programme. He reported a 18% prevalence of sexual abuse in intellectually
challenged children living in the community.

The study shows that 80% of the respondents were of the opinion that
special schools should impart sex education. The findings are similar to the
study conducted by Christian et al. (2001) who came out with the finding that
most of their respondents agreed that children with developmental disabilities
should be given the opporturrity to receive sex education (93%). There is a
minor difference in percentage and this may be due to cultural differences,
where in country like India, Sexuality is still dealt behind the screens.











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SUGGESTIONS
Like other children, the intellectually challenged child has sexual feelings
and is exposed to sexual messages and experiences. Since, by definition,
intellectually disabled children are less capable of comprehension and
understanding than "normal" children, special guidance and education are
needed to help them understand sex and their own sexuality. Human sexuality
is a normal part of everyone's life, including that of the retarded person, and
calls for understanding in terms of the age and condition in life of each
individual. There must be a realistic approach to the needs and drives of each
person. Some of the suggestions that will help the parents and teachers to
impart sexual education are:

1. Parents are the first and primary sex educators for the children. What
they teach their children about sexuality depends upon their own
behavior and attitude towards sexuality. Parents should first accept that
the intellectually challenged children are sexual like other.
2. Parents should teach positive attitudes toward ones own body and
sexuality.
3. An initiation to sexuality education can start in childhood when the child
starts exploring her/his body, instead of being a tiny lesson during the
onset of puberty.
4. Educational interventions should be adjusted according to the different
stages of life: childhood, adolescence and adulthood.
5. For subjects with intellectual disability, their linguistic comprehension
level should be taken into account with techniques based on open
discussion and not inductive teaching.
6. For educational interventions to be successful, it is essential that sexual
educators and counselors, in addition to working with their clients, also
work with parents and other close family members.

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7. Parents and special school teachers should use more supportive methods
with positive reinforcement and/or elements of explicit sex education
programs also with cases of intellectually disabled.
8. Role plays like using anatomically correct dolls is an effective method
in imparting sex related education to the children.


By teaching these kids with dolls, the children learns what is appropriate
and inappropriate sexual behaviors as usually these children associate
themselves with the dolls.
9. An intervention program should establish objectives for developing in
persons with intellectual disability a positive attitude towards sexuality
and improving their self-esteem.
10. Persons who are intellectually challenged are especially prone to abuse,
be it sexual, physical, or emotional. Using strategies like making them
aware of what is generally perceived as a good' and a bad' touch as
well as informing them of their right to say no', could be of advantage
in preventing this exploitation.
11. A sense of private and public places should be imparted to the child by
exposing the child to such situation to make the child understand the

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difference between public and private places. Once the child gets idea of
public places then appropriate sexual behaviors at the right places is
educated to the child through pictures.
12. Apart from imparting education on sex, personal skills such as finding
help, assertiveness, communication and friendship should also be
cultivated in the child.
13. Special schools should make an attempt to bring about a transformation
in the attitude of the society towards the sexuality of the intellectually
challenged children.
14. Government should encourage special schools and NGOs to organize
various programmes to impart knowledge to the parents regarding the
sexuality of the intellectually challenged children.
15. Government should strengthen the laws to protect the intellectually
challenged adolescents from any abuse and the abusers should be
severely punished.

















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CONCLUSION

Society has established norms for its members to function in harmony;
the area of sexuality is one of the most complex, since it involves cultural,
religious, educational and idiosyncratic factors. Society therefore views sexual
behaviors, which includes harmful and offensive behavior, those that are
displayed in the privacy of a relationship and those that are publicly accepted.
This study is about hearing the voices of members of a most marginalized
group in society intellectually disabled adolescents. The voices of
intellectually disabled adolescence are not always listened to, respected, or
trusted. Their opinions and narratives are often disallowed as untruths,
confusions, fantasies, and inconsequential. This study argues that the voices of
intellectually disabled adolescents deserve to be heard as they are entitled to be
consulted about their own sexuality: their experiences, their understanding, and
their needs. The unique brand and nature of the prejudice and discrimination
they face must be made known.

The truth is that sex education for intellectual disabled students is
lacking. Resources are limited, and a void in research affects all people with
disabilities and their personal sexual lives. Although there are policies in place
that recognize the rights of these adolescents, they have a struggle in breaking
through the barriers of prejudice and isolation in order to have real
opportunities to give expression to their sexuality and to gain access to
sexuality education in a meaningful way. Until educators and researchers take
the initiative to ensure proper sexual education this problem will continue to
escalate and our disabled individuals will be left with this burden.






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A STUDY ON SEXUALITY AMONG THE INTELLECTUALLY
CHALLENGED ADOLESCENTS IN THIRUMVERUMBUR AREA
Demographic profile of the informants
1. Age
2. Education
3. Occupation
4. Husbands occupation
5. Family income
6. Type of marriage
7. Number of children
8. Type of family
9. Domicile
10. Religion
11. History of mental retardation in the family
Demographic profile of the adolescents
12. Age
13. Gender
14. When did you come to know about the disability of the child?
15. Order of birth
16. Type of mental retardation
17. Does the child faces any other disability
18. Years of schooling





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19. Developmental milestones

Stages
Age
Head fix

Crawling

Sitting

Standing

Walking

Talking


Sexual practices of the intellectually challenged children
20. When did your child attained puberty?
21. Has your child undergone uterus removal operation?
22. When did your child undergo uterus removal operation?
23. What are the common sexual behaviors observed in your child?
24. Does your child seek privacy when dressing or using toilet?
25. Has your child touched their private body organs in public?
26. What are the common symptoms observed in your child during
menstrual cycle?
27. Does your child face hygiene difficulties during menstrual cycle?
28. Have you observed nocturnal emission in your child?
29. Does your child gets excited when he/she is with the opposite gender?
30. Does your child exhibit any sexual behavior with the opposite gender
siblings?
31. Does your child exhibit any sexual behavior with relatives of the same
age?

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32. Does any sexual act in movies or sexual pictures arouse your child?
33. Does your child exhibit any inappropriate sexual behavior in public?
34. If so what kind of activity?
35. Have you ever laid any rules of sexuality towards your child?
36. How does your child cope with the rules of sexuality laid by you?
Attitude of parents towards the sexual behavior of the intellectually
challenged adolescents
37. What was your reaction when your child attained puberty?
38. Do you agree that your child is sexually active like other children?
39. Why did you go in for removing the uterus of the child?
40. What do you think about removing the uterus of intellectually
challenged girls?
41. How do you feel when your child is interested in the opposite sex?
42. Do you worry that other person may interpret your childs behavior as
having sexual content when not intended?
43. How do you feel when your child exhibits inappropriate sexual
behavior?
44. How do you modify the inappropriate sexual behavior of your child?
45. As your child been sexually abused?
46. If yes
When:
Where:
Whom:
47. How did you come to know that your child has been sexually abused?
48. Do you think your child can get married?
49. Do you worry about the future of your child?


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Attitude of parents towards the sexual education of their
intellectually challenged children
50. Do you think sex education should be imparted in special schools?
51. Do you think it is important for your child to receive information on
sexual behavior?
52. Do you think it is important for your child to learn the basic difference
between friends and strangers?
53. Do you think it is important for your child to receive information on
body parts?
54. Do you think it is important for your child to receive information on
menstrual hygiene?
55. Do you think it is important for your child to receive information on
sexual abuse/assault?
56. Do you think it is important for your child to learn on how to report in
sexual abuse?