Chapter 1 - Introduction
A. The Need
All women need to receive regular gynecological
exams. Women with disabilities should have exams at the same
frequency and for the same reasons as other women.
However, this standard is rarely achieved.
In a recent study in one Bay Area county, a survey of women with
disabilities found that only 20 out of 450 women 18 years or
older had ever had a Pap test. Even more troubling, only three
out of 70 women over the age of 50 had ever had a pelvic exam.
The Breast Health Access for Women with Disabilities Program
in Berkeley estimates that nationally as many as 15 million women
have functional limitations that may be barriers to clinical
breast exams, mammography or breast self-exams.
When important prevention services such as
these are reduced, there is a proven increase in the risk that
serious health problems will go undetected and untreated.
The purpose of this manual is to help clinicians
provide these services. To do this successfully, it is important
to look at the reasons for decreased services, the many barriers
to reproductive health care faced by women with developmental
There are physical as well as communication
barriers to access.
- Medical staff are rarely trained to communicate
with women who have disabilities that affect communication and
- Health education materials in appropriate
formats are not always available.
- Staff are not trained in alternative methods
of providing the exam and transferring patients.
- Medical offices and equipment are not accessible.
- Getting to a clinic is often a major ordeal
that involves coordinating assistance and finding accessible
- Sign language interpreters are not available
There is a common belief that women with disabilities
do not need the gynecological exam because they are not
and have never been sexually active. We cannot assume that
women with developmental disabilities are not sexually active.
A woman may seek sexual contact and conceal it because those
around her disapprove. She may be sexually abused without her
parents', care giver's or attendant's knowledge or she
may be abused by one of these people. She may not know that abuse
is wrong, or understand why. She may not be able to verbally
report her experiences, or she may have tried to tell someone
but was not believed. Or, if abuse was combined with affection,
treats, caring behavior and/or positive sexual feelings, she
may feel ambivalent about the abuse or even participate willingly
in activities, which others define as abusive.
Many women are uncomfortable having a gynecological
exam. A patient with a developmental disability may have additional
concerns. She may have concerns about getting on the exam table
or reading consent forms. She may be uncomfortable with touch
or new environments. She may not know her "family history".
She may have never used a tampon or had intercourse. She may
have been taught never to "touch herself." She very
likely has been taught not to let anyone else touch her "private
parts". She may have reached the age of 30 or even 40 without
ever having had a pelvic exam. For some, coming to a clinic or
taking a pill is in itself very frightening. Sometimes a cycle
of problems is created. Any woman's first exam can be frightening.
Lack of sexuality education, discomfort with touch, or a history
of sexual abuse can increase this fear. If the first exam results
in trauma, the next exam is even more difficult, for both the
patient and the health care provider. In addition, many women
with disabilities are socialized to "please" and may
find it difficult to voice their fears and concerns.
Financial and Systemic Barriers
Most health care systems face severe financial
and time constraints. If gynecological health care begins at
the appropriate age with adequate and appropriate health education
and care, and that care is repeated at the medically recommended
or indicated intervals, the gynecological exam will usually be
much easier for the woman and both easier and quicker for the
health professional. In addition, it has been proven that women
with developmental disabilities who receive regular exams have
better gynecological health, learn more about their bodies, and
are more likely to report abuse.ay find it difficult to voice
their fears and concerns.
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Many misconceptions still exist concerning
people with developmental disabilities. People with developmental
disabilities are individuals, with a wide and often unpredictable
range of skills, abilities and needs.
Developmental disabilities, as defined by
California regulations, include "mental retardation, epilepsy,
cerebral palsy, autism and other conditions similar to retardation
that require similar treatment." These disabilities have
an onset before age 18 can affect development.
Many state-funded services are provided to
help children with developmental disabilities grow up and develop
in healthy ways and experience the same learning opportunities
that other people have.
Many people have disabilities that are not
easily diagnosed. And some have more than one disability. For
example, perinatal brain damage can cause mental retardation,
cerebral palsy and epilepsy. Yet most people with cerebral palsy
and epilepsy are not mentally retarded.
People with developmental disabilities are
often harmed by the assumptions others make about their conditions
and abilities. For instance, someone whose speech is severely
affected by cerebral palsy or who is heavily medicated may not
be able to develop her native intelligence because she is not
given opportunities to learn language skills or engage in social
Developmental disabilities are not diseases
and are not progressive, although secondary conditions may develop.
Like all patients, those with developmental disabilities may
have other related and unrelated conditions, health concerns
and diagnoses as well.
An assumption that the disability is the patient's
only problem may endanger the patient's health by causing other
health issues to be overlooked or ignored. For example, one woman
felt a lump in her breast and her doctor told her it was a bulging
muscle from pushing her wheelchair. She was later diagnosed with
stage three breast cancer, which ultimately proved fatal.
In another case, a young woman, with developmental
and emotional disabilities, complained to her doctor of stomach
pain and weight gain. The doctor assumed these were due to emotional
distress. Pregnancy was not diagnosed until she was over five
Specific Developmental Disabilities
is a catchall term for impaired ability to learn and think either
in the same way or at the same rate as the average person. Most
people with mental retardation can achieve some independence
as adults in their living situations, in their work, and in their
relationships. Some genetic syndromes, such as Down's Syndrome,
include mental retardation and have other implications for fertility,
aging, pregnancy or other aspects of physical health.
is a set of chronic conditions affecting body movement and muscle
coordination. It is caused by damage to one or more specific
areas of the brain before, during or shortly after birth, or
in infancy. People with cerebral palsy may have muscle tightness
or spasms, involuntary movement, disturbed gait and mobility,
abnormal sensation or perception, and/or impairment of sight,
hearing or speech. A person with cerebral palsy may experience
mainly stiff and difficult movement (spastic), involuntary and
uncontrolled movement (athetoid), a disturbed sense of balance
and depth perception (ataxic), or a combination of these effects.
when there are recurrent sudden and usually brief changes in
the brain function due to disturbed electrical activity. This
can cause alterations in movement or consciousness. Epileptic
seizures may be generalized, affecting all brain cells, or partial.
Results range from total unconsciousness to a fleeting, staring,
trance-like state. Epilepsy cannot be cured; it can usually,
but not always, be partially or completely controlled by anticonvulsant
medications. These medications may cause depression, loss of
mental function, changes in sexual feelings and function, and
Autism affects an individual's ability to use and understand
language and social cues and to interact with others. It is also
characterized by repetitive body movements, behavior patterns
and verbalizations and by impaired imaginative activity. People
with autism often desire a full range of social, emotional, physical
and sexual experiences, but their atypical response to sensory
data may cause them to resist physical contact, make little eye
contact, and avoid noisy and crowded environments. While autism
is strongly associated with intellectual impairment, individuals
with autism can be found with every level of mental ability and
with a wide range of unusual "splinter skills". Autism
is associated with many other conditions and syndromes, some
of which may be considered the primary diagnosis, as in the case
of Fragile X Syndrome. Autism usually appears in the first three
years of life.
"What Do I Need to Know?"
Beyond the Diagnosis
Whatever a patient's medical diagnosis, you
will want to know how her disability affects your ability to
provide medical care for her. You will want to ask functional
questions such as,
- How will I communicate with my patient? What
is her ability to talk and listen? Will I understand her? Do
I need to hire a sign language interpreter? Does she use a communication
- Will she understand what I say and how will
I know if she understands? Will we need pictures or videos to
help explain our procedures? Will she be able to give informed
- Will she be able to use my exam table and
be examined? Is a better exam table available?
- Will I be able to answer her questions about
sexuality and reproduction, such as questions about which birth
control methods might work for her? Where can I find this information?
- Is it difficult for her to handle touch,
pain, discomfort or a new situation? What can we do to prepare
- Will physical or sensory disabilities affect
her ability to stand, lie still, see what I am doing, or learn
breast self exam.
- Will limited sex education, sexual experiences,
or contact with medical care providers make the exam more difficult
- Will traumatic life experiences, such as
a history of sexual or physical abuse, make the exam more difficult
These and other questions will be addressed
in this manual, and are further addressed in the resources outlined
in the appendices.
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Menarche and Menopause
Most women with developmental disabilities
reach puberty and menopause at the same ages as the rest of the
Girls with developmental disabilities are
often surprised by puberty because they have not received adequate
education to prepare them for the changes. Those who are well
prepared are better able to deal with the dramatic and often
frightening changes to their bodies. Providers can help by urging
parents to prepare girls before puberty starts. Remind parents
of some of the signs of puberty that precede the onset of menses.
Encourage parents to provide the sexuality education. Once fertile,
all youth need to know the risks of pregnancy and STDs and how
to prevent them.
The Bay Area has many good resources to help
women with developmental disabilities find information and assistance.
See Appendix III.
Although changes such as menopause are predictable,
many women with developmental disabilities are not prepared for
them. Often care providers and medical providers are also unprepared.
The identification and treatment of menopause-related concerns
in the patient who is nonverbal is an especially difficult and
uncharted territory. Appendix V is a handout that
was prepared for patients and care givers to alert them to the
possible physical and emotional affects of menopause.
Like other patients, women with developmental
disabilities should be offered a full range of menopause treatment
options, with the information and education which will allow
them to choose either natural, untreated menopause or an appropriate
There is some evidence that women with Down's
syndrome or epilepsy have an earlier menopause than average.
For an excellent discussion of aging and developmental disabilities,
including menopause issues and treatment, and referrals to current
research, see Aging with Developmental Disabilities: Women's
Health Issues (on the web www.thearc.org).
Long term use of medication or years of living
with physical stress can lead to new health problems and symptoms
usually associated with aging. People with certain disabilities
may feel the wear and tear of aging earlier than the general
population. By the time she has reached her thirties, for example,
a female patient with cerebral palsy may already be dealing with
problems such as increasing joint and muscle pain, declining
mobility, increasing respiratory problems, bowel and bladder
problems, pressure sores and skin breakdown.