People with disabilities have experienced
a great deal of pressure not to have children. In the past many
were sterilized without their consent. Though illegal in California
for several decades, the practice continues in other countries.
Many parents who have disabilities have had to fight for their
right to be a parent or to keep custody of their child. Almost
all have had to fight hard and continually for the access, services,
and resources they needed. There has been very little support
for women with disabilities who want to have children. Through
the Looking Glass in Berkeley remains the main organization focused
on support and advocacy for parents with disabilities, and serves
many parents with developmental disabilities. It also provides
information on pregnancy and childbirth for women with physical
disabilities. State funded Regional Centers for people with developmental
disabilities may help parent find resources as well. (See Appendix
Some parents with developmental disabilities
have adopted. This is an important option for people who do not
choose pregnancy, which can be difficult or dangerous for women
with some disabilities. The Question of David by Denise
Sherer Jacobsen is about one couple who adopted.
Very few disabilities affect fertility. However,
an individual with a disability may experience infertility. Infertility
is on the rise. Sexually Transmitted Infections (STIs) can lead
to pelvic inflammatory disease (PID), which can cause infertility.
In addition, fertility decreases with age. This is important
information for all patients to have, including those with disabilities.
Many people still assume that a disability,
genetic or otherwise, is an automatic reason to have an abortion
or sterilization. Occasionally infertility has a genetic basis
and genetic counseling may be indicated. Some people with disabilities
that may have a genetic or chromosomal basis may also choose
to see a genetic counselor. In either case, it is important to
see a genetic counselor whom they can trust to provide unbiased
information and counseling. The genetic counselor should respect
the client or client's agenda and not focus on disability issues
if infertility or another issue is the presenting problem.
Deciding on Contraception:
Patient and provider should discuss birth
control methods together, looking at:
- The patient's lifestyle and personal preferences
- Effectiveness and usability
- Potential side effects
- Interaction with the patient's current medications
Patients may want to examine in-depth protocols
or descriptions for using each method. Family planning clinics
have this information, as does the handbook, Contraceptive
Technology, which is updated every few years and can be purchased
from Irvington Publishers, 522 E. 82nd Street, Suite 1, New York,
NY 10028. The website, www.ppfa.org has in-depth descriptions
of each method for the layperson. The website www.sexualhealth.com
has information specifically for women with disabilities. For
fact sheets on contraception for women with epilepsy and mobility
impairments, visit: http://www.4woman.gov/wwd/wwd.cfm?page=75
Consider all options. Low-dose contraceptives,
including pills, Norplant and Depo Provera, are progesterone-only
methods that increase the options for people with disabilities
who cannot use estrogen-containing pills. The "female condom,"
a sheath inserted in the woman's vagina before intercourse, and
the Mentor condom, which has a narrow band of adhesive to keep
the condom on the penis without holding, may be more user-friendly
condoms. The Avanti condom, made of polyurethane, can be used
by those allergic to latex.
Many people still think sterilization will
solve their concerns about the vulnerability, fertility or inappropriate
behavior of their disabled child or client. Sterilization cannot
protect from sexual abuse, or cure sexual acting out, abusive
or inappropriate behavior. It has no effect on menstruation.
It is important to promote education as an
alternative to sterilization. There are programs that will teach
self-protection skills, like recognizing abusive situations and
saying "no." And even girls with severe disabilities
can learn to handle their periods with early education and good
behavior training programs.
Sterilization is the preferred birth control
for couples who have had all the children they wish, and for
a few people who do not want children. Some people with disabilities
do choose sterilization. However, making a permanent decision
such as this may be difficult for a person with a cognitive disability.
Fortunately, other birth control methods such as Depo Provera
and Norplant provide more options.
Some people cannot learn to give informed
consent. For them to get sterilized, it is necessary for someone
to become their conservator and go to court. It is almost always
better to explore other birth control options.
Sexually Transmitted Infections (STIs)
Only barrier methods such as condoms and dental
dams prevent HIV and other STIs. It is very important that everyone
know how to use and obtain condoms. Practice, which can be done
on a rubber or wooden model of a penis, is very important. Water
based lubrication makes the condom easier to put on and reduces
It is always important to obtain informed
consent for an abortion and to counsel the patient to make sure
she is making her own decision. Women with disabilities have
been denied abortion or pressured to choose abortion by parents,
care providers and others. A conservator can consent for a conservatee
to have an abortion. If the provider feels that the patient is
being pressured to do something she does not want, the provider
should call Protection and Advocacy.
A Partial List of Contraceptive Implications
for People with Disabilities
- May be difficult to learn.
- Communication with partner about use of condoms
may be difficult.
- Partner assistance may be necessary.
- Use may be painful for women with blood disorders
or patients with skin problems that cause irritation.
- Careful hands-on instruction in use is important
for most people.
- Condoms protect against STDs and are readily
Oral contraceptives that contain estrogen
- User may need help keeping track of schedule.
- May be contraindicated if circulation is
affected, if a disability is due to diabetes, glaucoma, or vascular
Low dose or mini pill (no estrogen)
- User may need help keeping track of schedule.
- Increased spotting may be difficult to manage.
- May interact positively with some seizure
- Amenorrhea associated with Depo may be a
plus or a minus for some patients.
- Long-term possible bone loss may be a concern.
- Provides protection for a longer period of
time than barrier methods or contraceptive pills.
- Making a decision with a 5-year horizon may
be difficult for some.
- Spotting may be difficult to manage.
- If disability affects upper limbs, may need
to insert in leg.
- The feel of the inserts may be irritating.
- User may forget to check strings.
- Partner assistance may be needed to check
- May cause irritation; this can be dangerous
if it is not easily detected or if the individual is vulnerable
- Offer protection against STDs and are readily
Tubal ligation or vasectomy
- Must be eighteen (21 if on Medi-Cal) and
able to give informed consent.
- User may have difficulty making a long-term
Care Provider Handout
"Birth Control - How Care Providers Can Help"