REPRODUCTIVE HEALTH—General Information
Minority
Status and Sexual Orientation
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Very little
information is available on the risks and benefits of various forms of contraception for women with
disabilities.
·
A
mistaken belief that few women with disabilities are sexually active and,
therefore, do not need birth control, may underlie the lack of research about
safe and effective birth control for this group.
·
Gynecologists
typically have not offered information about birth control to women with very
severe, visible disabilities.
·
When
doctors do give information about birth control to women with disabilities,
they may not take women’s disabilities into consideration.
·
In
a national study of nearly 1,000 women with and without disabilities, 30% of
women with disabilities believed that their doctors had given them wrong
information about birth control, compared to only 9% of women without
disabilities.
·
When
making decisions about birth control, women with disabilities and their doctors
should consider other medications they are taking, limits in using their hands
to insert a diaphragm or other barrier methods, increased risk of blood clots,
and the additional urge to use hormones to manage menstrual periods.
·
Success
in using hormone methods, such as the Pill or Depo Provera, has been mixed depending on type of disability.
Hormones in the Pill can improve some chronic conditions but make others worse.
·
Natural
family planning methods that rely on taking body temperature to know when to
avoid sexual activity during ovulation are likely to fail for any woman with
spinal cord injury or other disabilities that produce irregular body
temperature.
·
Women
with spinal cord injury or chronic conditions, such as lupus and scleroderma, should avoid using IUDs because of increased
risk of severe bleeding, undetected movement of the device away from its
appropriate location in the uterus, and autonomic dysreflexia.
·
The
perception that they have few safe options, along with difficulties they
experienced when they tried to use various methods, seems to have led many
women with disabilities to prefer surgical methods of birth control or none at
all.
o In the national study referenced above,
women were significantly more likely to use no birth control, have their “tubes
tied,” have a hysterectomy, or use natural family planning methods, than were
women without disabilities.
o Overall, women with disabilities in
that study were most satisfied with surgical methods of birth control, such as tubal ligation or hysterectomy,
and least satisfied with barrier methods, such as the diaphragm.
Only
certain types of disabilities interfere with fertility in women.
·
Fertility
is defined as the ability to conceive, in other words, the ability to get
pregnant. Few studies have been done on
the effects of disabilities on fertility in women.
·
It
appears that most women with disabilities who are sexually active do not have
problems getting pregnant that are related to their disabilities.
·
Fertility
rates have been examined in few types of disabilities, but, when they have been
examined, these rates are similar to rates for women without disabilities.
o For example, fertility rates are the
same for women with spinal cord injury and spina
bifida as they are for women in general.
o In studies in which fewer women became
pregnant after injury, their self-reports that they had decided to not have
children accounted for the difference.
o Other factors that would ultimately
reduce fertility rates are lack of a regular sex partner, single marital
status, and problems, such as positioning, lack of lubrication, and urinary
tract infection, that can interfere with having sexual intercourse. It is barriers reported by women with
disabilities, rather than the physical ability to conceive, that likely result
in fewer women with disabilities having children in the long run.
·
Disabilities
that directly interfere with fertility are autoimmune and connective tissue
disorders such as rheumatoid arthritis, lupus, and scleroderma.
o
Women with autoimmune
disorders make autoantibodies that may destroy sperm,
ovaries, or hormones, or cut off oxygen and nutrients to the fetus.
o
Hormonal control of
ovulation may be impaired with rheumatoid arthritis.
o
Kidney disease occurring
with lupus or scleroderma can also cause problems
with fertility.
o
Taking nonsteroidal
anti-inflammatory drugs to treat these disorders, such as Motrin, or cytotoxic drugs, such as Imuran,
may also impair fertility.
o
However, the pregnancy
rate of women with autoimmune disorders can be increased safely by taking daily
steroids or aspirin.
More (detailed)…
Some
believe that eugenetics and general perceptions of
women with disabilities as asexual are responsible for the high rate of hysterectomy in younger women with
disabilities.
The goals of eugenics have been
described as denying women with disabilities the right to bear and raise
children to prevent “biologically defective” women from passing on “their
defective genes”. Eugenics is used
against women with disabilities by creating barriers to using obstetrical and
gynecological services, sterilization, forced or pressured abortion, keeping
men and women separate in institutions, injecting harmful contraceptives,
taking away child custody, and turning down applications to adopt a child. Studies have documented that women with
disabilities have been admonished for becoming pregnant or encouraged to have
an abortion, despite evidence that most women with disabilities give birth to
healthy babies.
In a study conducted with about 1,000 women
with and without disabilities, women with the most severe limitations in
function were the most likely to have had a hysterectomy. Women with disabilities were more likely than
women without disabilities to have had a hysterectomy for a reason that was not
medically necessary. Often, a health
care provider recommended having the hysterectomy. In some cases, the hysterectomy was performed
at the request of a parent or guardian.
Sometimes the disabled woman herself requested a hysterectomy, however,
so that she would not have to deal with difficulties managing menstruation or
birth control.
Women
with disabilities may not receive the same amount of sexuality and reproductive
health information, from the same
sources, as non-disabled women, and they obtain less of their education through
sexual experience.
·
A
study compared the sexual knowledge, feelings, and needs of mostly women, but
also some men, with physical disability and mild intellectual disability, with
those of the general population:
o
People with physical
disability had less sexual knowledge;
o
People with physical
disability had less sexual experience;
o
People with physical
disability had more negative attitudes toward sex;
o
Half of people with
disabilities had never had any sex education;
o
People with disabilities
were less likely to get sexual information from their family and friends;
o
People with disabilities
were more likely to get sexual information from media, such as TV and magazines,
or formal classes.
·
A
national study that focused only on how women with physical disabilities learn
about sexuality also found that they were more likely to learn about sexual
intercourse from college courses.
However, they found that overall, women with disabilities got sexual
information from the same sources, and at the same age, as women without
disabilities.
·
Overprotective
parents and caregivers may prevent teens with disabilities from learning about
and experiencing sexuality.
·
Studies
indicate that women with disabilities have strong, often unmet needs to
experience dating, intimacy, and sexual interaction, but they lack opportunity
for sexual expression and lag behind their peers in sexual experience.
·
Health
care providers, assuming that women with visible or disfiguring disabilities
are not interested in sex or not sexually active, are less likely to offer
information on birth control, safe sex practices, sexually transmitted disease,
and possible effects of their disabilities on sexual response than they are to
women without disabilities.
More (detailed)…
Very little is known about the
effects of menopause or the
treatment of its symptoms with hormone replacement therapy (HRT)
on disabling chronic conditions.
·
Women
with spinal cord injury, motor neuron disease, multiple sclerosis, brain
injury, temporal lobe seizures, rheumatoid arthritis, scleroderma,
lupus, and diabetes tend to have menopause at an earlier age than the average
age of 51.
·
Changes
in hormones that occur in the transition to menopause frequently worsen health
problems already occurring with the disability or chronic condition.
o
Women with MS and spinal
cord injury have more hot flashes, but these must be distinguished from
disability-related flushing and body temperature changes that are not related
to hormone changes.
o
Skin problems already
frequent in women with disabilities may worsen due to the loss of skin
elasticity and tissue strength that occurs with menopause. This may increase the frequency and severity
of pressure sores and delay wound healing.
o
Changes in vaginal and
urethral tissue that accompany menopause may increase the frequency of bladder
spasms and infection.
o
Autonomic dysreflexia may increase with high-level spinal cord
injury.
o
Spasticity may increase in women with neurologic conditions.
o
Women with disabilities
are at increased risk of osteoporosis (bone thinning and wasting), during
menopause because of long-term decreased mobility and weight-bearing, certain
medications, or the presence of a disorder that directly deteriorates the
skeleton, such as arthritis.
·
The
extent to which hormone replacement could benefit women with disabilities
without unacceptable risks is uncertain because these women were not included
in the Women’s Health Initiative or other large studies of menopause and
hormone replacement therapy.
o
Therefore, the finding that HRT did not significantly improve quality of life may or
may not be as true for women with disabilities.
o
Likewise, findings of
increased risk of certain types of cancer while on HRT
has not been examined in the context of other life-threatening risks or
functional decline without HRT for women with
physical disabilities.
o
More research is needed on
the relative safety and effectiveness of using alternative doses, hormone
mixtures, and vehicles for administering HRT, such as
the skin patch instead of oral form, for women with various chronic conditions
and disabilities.
·
Findings
about the extent to which women with physical disabilities use HRT compared to women without disabilities have been
inconsistent, depending on the mix of disabilities among the study
participants. Because new negative
information about HRT has been publicized since those
studies were conducted, the effect of this information on HRT
usage among women with disabilities is uncertain.
·
Women
with disabilities surveyed in a large national study were significantly more
likely than women without disabilities to be concerned about the safety of HRT for them, even before publication of recent studies
revealing adverse effects of HRT in women without
disabilities.
·
More
studies are needed on the effectiveness and safety of alternatives to HRT for relieving symptoms of menopause and accompanying
midlife health problems in women with disabilities. These may include natural forms of estrogen
found in certain herbs and plant-based foods.
More (detailed)…
Disability may affect menstruation and its management.
·
There
has been little research on how various disabilities affect menstrual cycles
and menstrual flow, and most of these have focused on spinal cord injury.
o
When girls are injured
before or at puberty, menstruation is the same as for girls without
disabilities, and begins at about the same age.
o
At the time of injury,
menstrual cycles stop temporarily, but start up again within six months.
o
The level or completeness
of injury has no effect on menstruation.
o
Menstruation may worsen spasticity.
·
Between
72% and 85% of women with multiple sclerosis, stroke, or other neurologic disorders have reported irregular menstrual
cycles and worse symptoms related to their disabilities prior to or during
menstruation.
·
Medications
taken for multiple sclerosis and other chronic conditions may disrupt
menstruation or delay the beginning of menstruation.
·
Women
with disabilities report numerous problems with menstrual hygiene and use of
menstrual products, including inadequate personal assistance to change pads and
tampons often enough, skin breakdown, odor, leakage, interference with
catheterization, and increased rates of vaginal and urinary tract infections.
·
Women
with disabilities who are frustrated with menstrual management problems often
seek surgical solutions such as hysterectomy or surgery on the lining of the
uterus that sometimes reduces or halts menstrual flow but may also delay
diagnosis of cancer.
Minority status and sexual orientation both
have disproportionately negative impacts on women with disabilities.
·
A
focus group study of women with physical disabilities from
o
A combination of culture
and disability constrained them in learning about sexuality, relationship
issues, and family planning issues.
o Having a disability compounded their
cultural mores that discouraged open discussion of sexuality.
o While growing up, girls with
disabilities were treated differently from their able-bodied sisters because
families did not expect them to need intimate and marital relationships.
o Parents who arranged marriages for
their able-bodied daughters did not do so for their disabled daughters.
o Asian men with and without disabilities
rejected disabled women as partners.
o Women from diverse cultures had the
same experiences as white women in upholding stereotypes of women with
disabilities as asexual and unable to assume marital or parenting roles.
o Health professionals from these ethnic
communities reacted negatively to disabled women becoming pregnant, from
telling a woman with MS to have a tubal ligation to insisting that a woman with a disability abort
her disabled fetus.
·
An
ethnographic study revealed how disability, lesbianism, and race can interact
to affect sexuality of women with disabilities.
o Women commonly felt isolated and not
fully understood or accepted within any of the three cultures.
o Lesbians with disabilities protested
the myth that they were lesbians not by choice, but only because they were
rejected by men.
o The lesbian community is more accepting
and supportive of the sexuality of women with disabilities than is the male
heterosexual community.
o Lesbian women feel left out in sex
education groups for women with disabilities, and do not feel safe to bring up
their sexual preference.
More (detailed)…
Few formal studies have been
done on parenting concerns among
women with disabilities, but parental networks and dissemination of occupational
therapy-based information have been increasing to share experience and provide
practical support.
·
Women
with chronic conditions that tend to relapse after childbirth, such as multiple
sclerosis and rheumatoid arthritis, may need to plan for additional assistance
with newborn care.
·
Women
with physical disabilities generally are able to breastfeed as long as they
consult with their physicians about the safety of medications that may reach
the baby. The let-down reflex necessary
for breastfeeding usually functions even in women with paralysis.
·
Studies
indicate that partners of women with disabilities tend to take on more equal
responsibilities in child care than do partners of able-bodied women, yet they
do not perceive that they have more child care responsibilities than fathers or
other partners of able-bodied women.
·
Spinal
cord-injured mothers reported in a study that, compared to other families,
there were no differences in family members’ relationships or roles, and their
children were as able to participate in activities as other children. The children did not perceive their mothers
as any different from other mothers because of their spinal cord injury.
·
Although
valuable organizations, such as Through the Looking Glass, are available to
provide practical assistance and information to parents with disabilities,
studies are needed to explore the extent to which parents nationwide are aware
of such services and make use of their technical assistance and supportive
networks.
·
Books
and newsletters studying and documenting the experiences of parents with
disabilities with pregnancy and parenting have been published, often by parents
and rehabilitation specialists who are themselves parents with disabilities.
More (detailed)…
Women
with disabilities face some problems with pregnancy
and delivery that are related to their disabilities, but with knowledgeable
health care providers, most are able to give birth to healthy babies.
·
In
national studies, women with disabilities have reported negative experiences
with pregnancy and childbirth because they had difficulty finding health care
providers and hospitals that had experience managing pregnancy and childbirth
in women with disabilities.
o
This
lack of experience has been particularly true for disabilities that are
uncommon in women, such as spinal cord injury.
o
One
study demonstrated that future internists and obstetricians had marked deficits
in knowledge about possible disability-related complications of pregnancy with
spinal cord injury, indicating that these knowledge gaps are likely to continue
into the future.
o
This
lack of knowledge and experience has led some doctors to communicate
unwarranted negative expectations about pregnancy outcomes to women with
disabilities who become pregnant or who express the desire to have children.
o
In
some cases, pregnant women with disabilities have been advised to end the
pregnancy and to have a tubal ligation
(i.e., “have her tubes tied”) or have a hysterectomy to prevent future
pregnancies.
o
An
often overlooked solution for local obstetricians who lack experience is to
search nationwide for a doctor who is experienced with the disability
·
Most
women with disabilities can manage pregnancy and give birth to healthy babies
if they have a health care team that is knowledgeable about potential risks
related to the women’s disabilities.
o Typically overlooked difficulties that
are common to women with many types of physical disabilities are greater limitations
in physical functioning that increase the need for assistance from others,
physical and occupational therapy, or upgraded equipment to help with mobility
and daily activities.
o Also common to women with various types
of physical disabilities are increased problems with bladder function, such as
increased infections, increased bladder spasms and leakage, and increased
difficulties surrounding catheter usage, which may require a change in the
bladder management program.
§
Frequent
infections are particularly problematic because they can lead to spontaneous
abortion and miscarriage, pre-term labor, and low birth weight babies.
o Skin problems typically increase with
physical disabilities during pregnancy, which can range from more pressure
ulcers with spinal cord injury to more skin overgrowth and hardening with scleroderma.
o The risk of blood clots increases as
the pregnancy progresses for women who use wheelchairs.
o Breathing difficulties and risk of
pneumonia increase as the pregnancy progresses for women who already have
respiratory impairment.
o Preexisting bowel problems may increase
during pregnancy, particularly constipation and risk for bowel impaction.
o Spasticity tends to increase during pregnancy for
women who have neurologic conditions, such as
multiple sclerosis, spinal cord injury, spinal bifida, and cerebral palsy.
o Risk of autonomic dysreflexia,
a life-threatening sudden rise in blood pressure, increases for women with
high-level spinal cord injuries, and may be misdiagnosed and incorrectly
treated as pre-eclampsia.
o The frequency of seizures tends to
increase during pregnancy for women who have already have seizures with their
brain injury.
·
Some
chronic conditions, such as multiple sclerosis and rheumatoid arthritis,
improve during pregnancy while others, such as lupus, tend to worsen.
Women
with disabilities have lower rates of sexual
activity than non-disabled women.
·
A
national survey revealed that most women with disabilities have had sexual
experience at some time in their lives, and nearly half were sexually active at
the time of the survey. However, they were significantly less likely to be
sexually active currently and within the last month than women without
disabilities.
·
Severity
of disability was not related to amount of sexual activity.
·
In
a study of sexual activity in women with spinal cord injury:
o
Sexual activity decreased after injury, as age
increased, and in comparison with able-bodied women.
o
Preferences in types of
sexual activity changed after injury; the favorite activity was intercourse
before injury but kissing, hugging, and touching were favored after injury.
·
In
some studies, the importance of having sexual activity remained unchanged after
spinal cord injury; in others, importance decreased after injury.
·
Women
with spinal cord injury have reported difficulty in getting potential partners
to understand that they were still interested and able to have sexual activity
after injury.
·
Women
with early onset physical disabilities experienced less sexual activity and
were more dissatisfied with their frequency of sexual activity than women
without disabilities, according to one study.
·
Studies
of women with rheumatoid arthritis, lupus, and stroke demonstrated lower rates
of sexual activity, particularly sexual intercourse, and higher rates of
complete abstinence from sexual activity, compared with before disease onset
and compared with women without these disorders.
·
Fear
of losing bowel or bladder control during sexual activity leads women with
multiple sclerosis or their partners to avoid sexual activity.
More (detailed)…
Many women with disabilities experience problems with body image
and sexual esteem.
·
A
study of women with visible mobility impairments revealed that women who were
older at onset of disability reported higher levels of positive sexual
self-esteem than did women with early onset of disabilities.
·
Another
study showed that sexual self-esteem predicted sexual adjustment above and
beyond cognitive adaptive constructs such as optimism, self-esteem, and
internally based personal control.
·
In
a focus group study, many participants said that their physical impairment made
them feel that their bodies were physically and sexually unattractive, but some
felt comfortable with their appearance and did not desire to hide their
disability or to be able-bodied.
·
Feedback
from the environment, such as difficulty finding a sexual partner, was found to
be a powerful mediator of body esteem.
In other words, those unable to attract a partner would have lower body
esteem, which includes feelings of physical attractiveness, sexual
attractiveness to self and others, comfort with one’s body, and comparison with
a “normal” body.
·
Study
participants preferred bodies without disabilities, but without necessarily
believing that bodies with disabilities were unattractive.
·
Body
dissatisfaction stemmed more from functional limitations and pain than altered
appearance.
More (detailed)…
Some of the problems women with
disabilities experience with sexual
functioning are specifically related to their disability.
·
While
a wide range of treatments have been developed to help men with erectile
failure, little has been done to help disabled women who have problems with
sexual functioning.
·
The
most common barriers to sexual functioning reported by women with physical
disabilities in our national study were weakness, vaginal dryness, lack of
balance, hip or knee pain, and leg spasticity.
·
Studies
of women with spinal cord injury found bowel and bladder accidents, spasticity, positioning problems, and lack of spontaneity
interfered the most with sexual activity with a partner.
·
In
our national study, sexual response was lowest in women with spinal cord injury
and stroke.
·
In
women with stroke and other brain injury (e.g., TBI),
sexual dysfunction depends on the severity of the neurologic
impairment and the site of the damage to brain structures, but women with TBI in one study had more positive feelings about their
sexuality than did men with TBI.
·
Extensive
research has been done on physiology of sexual response in women with spinal
cord injury and multiple sclerosis, but sex partners in surveys reported that
emotional closeness and willingness to try a variety of sexual activities were
more important for sexual fulfillment than physical ability.
o Capacity for reflex lubrication,
orgasm, and satisfaction depend on the completeness and level of the spinal
cord injury, but psychogenic response may still be possible with some
incomplete injuries, and non-genital body parts often play a greater role in
activating sexual response.
o Skin can become hypersensitive in
spinal cord injury, making touch painful; conversely, increased sensitivity of
body parts above the level of injury can increase sexual response.
o Participation in sexual activity was
found to be related more to activity before injury than to extent of injury.
o Women with disabilities report being
more upset by bladder accidents than their partners.
o There may be differences in sources of sex
partners for men and women with spinal cord injury; nurses and other health
professionals as a source of sex partners was not used at all by women in one
study.
o Neurologic changes related to multiple sclerosis
(MS) such as decreased desire, changes in genital sensation, decreased vaginal
lubrication, and decreased frequency or intensity of orgasm directly affect
sexual functioning.
o Non-genital numbness, pain, burning,
discomfort, weakness, spasm, fatigue, incoordination,
medication side effects, and cognitive impairments can also impair sexual
function in persons with MS.
o Studies also indicate that nonphysical
factors can affect sexual functioning in persons with MS, such as negative
self-image, mood, or body image; depression and anger; feeling less attractive;
fear of rejection; worry about satisfying the partner; and difficulty
communicating.
·
Few
studies have been done of sexual functioning in women with progressive neuromuscular
disorders, such as muscular dystrophy, spinal muscular atrophy, poliomyelitis,
or Charcot-Marie-Tooth disease.
o The neuromuscular disease process does
not affect sexual response capability, sexual arousal, vaginal lubrication, or
orgasmic capacity.
o The main factors affecting sexual
practices and problems are age at onset of the neuromuscular disorder and its
rate of progression, which imposes physical limitations.
o Nearly all men, but only one-third of
women, report masturbating in surveys of sexual function of people with
neuromuscular disorders.
o In a study of ventilator users with
neuromuscular disorders, mainly polio, sex life was the only quality of life
issue for which participants expressed dissatisfaction.
·
Factors
that most commonly affect sexual functioning of women with arthritis and other
connective tissue diseases include pain, joint stiffness, fatigue, decreased
desire or other side effects resulting from use of steroids and other drugs,
loss of mobility, inadequate vaginal lubrication, and disturbed body
image. Pain is the most limiting symptom
in most studies.
o Loss of range of motion in the hips can
interfere significantly with intercourse, and arthritis in the hands can
interfere with masturbation alone or with a partner.
o Some women report worse arthritis
symptoms the day after intercourse.
o Disabilities, such as scleroderma, and medications can produce acid reflux and
heartburn that increases while lying down during sexual activity.
o Scleroderma can also tighten skin around the
vaginal opening, and lupus can produce skin ulcers and rashes on the vaginal
lining, making intercourse difficult.
o More than half of couples report mutual
dissatisfaction with their sexual relationship, with dissatisfaction directly
related to the degree of functional disability and with women reporting greater
dissatisfaction than men.
·
The
partner’s unfounded fear of hurting the woman with a disability is found to
interfere with engaging in sexual activity across disabilities.
More (detailed)…
The prevalence of sexually transmitted diseases (STDs) is
the same for women with disabilities and non-disabled women.
·
For
several reasons, STDs often go undetected or diagnosis is delayed in women with
disabilities, leading to preventable pelvic inflammatory disease and
infertility.
o Women with disabilities may not detect
signs and symptoms of STDs, or they may mistake them for urinary tract
infections, if they are unable to see them or feel discomfort from them.
o Doctors who assume women with
disabilities are not sexually active may fail to screen for STDs or educate
them about safe sex practices.
o Women with disabilities are discouraged
from getting screened for STDs by inaccessible doctors’ offices, difficulty
getting onto the examination table, or previous experience with doctors not
knowing how to handle disability-related symptoms during the exam, such as spasticity, imbalance, and autonomic dysreflexia.
o Women with disabilities may not take
medication prescribed for their STDs because they cannot swallow pills or open
the bottle, and no alternatives were offered.
·
Presence
of an STD may be a sign of sexual abuse, particularly in women with cognitive
impairments, who live in institutions, or who need assistance with personal
care.
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