Women With Disabilities
. . . . encourage you to
make choices that go beyond society’s
stereotypes and reflect your own unique talents,
interests, and dreams, while also taking
into account your real limitations and needs.
— Harilyn Rousso,
Disability Rights Pioneer
At least 24 million American
women are living with disabilities (U.S.
Census, 2000). Various diseases and conditions
produce some form of disability that makes
life more challenging due to physical, emotional,
mental or sensory limitations. A number of
disabilities disproportionately affect women.
Also, the likelihood of having a disability
increases with age.
Women with disabilities
cope with the many common stresses of any
life, such as shortages of time, money,
emotional support, and childcare, plus
an overabundance of chores, demands, and
responsibilities. Because they may encounter
discrimination due to their gender and
disabilities as well as inaccessible services
and information, they have special needs
for information about support resources,
rights and benefits.
What is the risk of
breast cancer for women with disabilities?
All women are at risk for breast cancer,
including women living with a disability.
Having a disability does not mean a woman
is at higher risk for breast cancer.
However, statistically, women with disabilities
are more likely to be obese, have had
chest radiation in the past, and to not
have had children—all
factors that increase the risk of breast
cancer—than women without disabilities.
In addition, women with physical disabilities
are at higher risk for delayed diagnosis
of breast and also cervical cancer (Center
for Research on Women with Disabilities,
one in five people in the United States
has a disability—the largest
minority group in the country.
What challenges do women with
disabilities face in breast care and treatment?
As a disabled
woman, access is difficult for me. I
wait until the last minute to go to a doctor
because it is embarrassing. I have to
look at the location, parking, doors, waiting
room. When I get there, it always seems
like I am an inconvenience to the staff.
Carolina focus group participant,
Carolina Office on Disability and Health,
Women with disabilities are
faced with some unique challenges in regard
to their breast health. Despite the large
number of disabled women who need breast
health services, there are many barriers
that reduce the quality and accessibility
of their care. For example, there are
physical barriers that make healthcare
settings inaccessible, despite the requirements
of the Americans with Disabilities Act
Some of the challenges faced
by women with disabilities include:
barriers such as buildings, examining
rooms, and medical equipment that are not
geared for women with particular needs;
of adequate transportation and support
services to keep appointments, run errands,
or receive medical care;
- financial restraints;
of reliable, inclusive, accessible health
information and services from healthcare
providers that address their needs; and
of disability knowledge and sensitivity
Women with disabilities
often have less access to breast health
services than any other group of women.
Overall, women who are disabled tend
to receive mammograms less than women
without limitations. Even if women with disabilities
schedule mammograms or clinical breast
exams, many cannot receive either service
because of inaccessible healthcare
facilities and lack of appropriate
Most hospitals and
are not set up for women with disabilities.
Trying to get on the examining table is
the worst part. One time I was not lifted
correctly and was in a neck brace for two
years. It makes you not want to go because
afraid of getting hurt.
Breast Health Access for Women with
Disabilities (BHAWD), www.bhawd.org
with disabilities may have various physical impairments that
may affect their ability (or their
ability) to perform all methods
of breast screening. Women with limited
hand and arm function, with lack of
sensation in their fingertips, or with
low vision are unable to perform breast
self-exam according to recommended
procedures. Many women who use wheelchairs
cannot transfer themselves or be transferred
onto standard examining tables.
Similarly, women using wheelchairs
may not be able to find accessible
mammography machines to accommodate
them sitting in their chairs. And women
(including seniors) who have tremors,
who experience spasms, or who lack
the stamina to stand at an imaging
machine may need to be seated for screening.
you kidding? I’ll
never go through that ordeal again.
balance or hold still long enough
for them to get a good picture!
Breast Health Access for Women with Disabilities
and societal biases can also be a barrier
for screening and treatment. Healthcare
focus on the area of the woman’s
body affected by the disability and might
not encourage these women to
regularly examine their own breasts
or get a mammogram. Or, if they do
encourage breast self-exam, they may
not be informed about how to help women
with functional limitations (such as
limited use of their hands) perform
breast self-exams. Many healthcare
providers also may have little knowledge
about serving patients with disabilities.
Also, in most cases,
women with disabilities are not identified
as an “underserved” population
purposes of breast cancer screening.
Therefore, they are not specifically
targeted in education and outreach
efforts by breast cancer organizations.
What can women with disabilities
If you are a woman with a disability,
remember that you are at risk for
breast cancer and should follow the same
breast health guidelines as all women.
If you are unable to do an entire breast
self-exam because of physical limitations,
you should do as much as you can
yourself, so that you are involved in
your own breast health. You can learn
more about adapted ways to do breast
self-exam for women with disabilities
from Breast Health Access for Women
with Disabilities (BHAWD) and Adaptive
MammaCare System for women who are
deaf or hard of hearing, or women with
vision loss (See Resources at the end
of this section).
Some Tips for Seeing
- Get what you need.
At least three days before your appointment,
call the provider’s
office and request any reasonable accommodations
you might need. This may include a sign
language interpreter, alternate format
of health information, help with undressing,
etc. This will help the office staff
- Be prepared. Before going
to the appointment be sure you know what
health issues you want addressed and
why. Make a list of the questions you want
answered. Most doctors will want to know
the date of your last period and what medications
you are taking.
- Speed up the process.
For your appointment with a new provider,
bring evidence of your health
insurance coverage with you. Try to think
about insurance issues like co-payments.
assertive. You have the right to receive
services. The medical staff is there
to help you.
- Ask questions. You have
a right to get information from every
medical provider in a form that you understand.
Ask to get information in your native language.
Ask for more explanation if you feel confused.
Keep asking questions until you feel like
- Share what you know. You
know your own body better than a medical
provider. Tell the professionals your opinions and any recent
medical history related to your
- Be willing to listen. After
you request information or services, listen
to what the answer is. While listening, decide if they
have answered your questions.
If not, keep asking.
- Keep records. Keep all
the papers concerning your health care
together in a file. Keep a diary or log
of any recent medical problems.
- Bring a
friend. If you feel uncomfortable going
to your appointment by yourself, go with
someone. Invite a friend or family member
who helps you feel stronger or helps
you stay focused.
- Remember your rights. Everybody
has the right to good health care.
Everybody has the right to be informed about their health,
to make choices about what
happens to their bodies, and to receive services in a timely
A few organizations have specific
information and support for women with disabilities:
see the Resources below. Please see other
sections of the Resource Directory for information
about breast cancer diagnosis, treatment
of this section were adapted from Breast
Health Access for Women with Disabilities
(BHAWD), 510.204.4866 or 510.204.4574 (TDD),
www.bhawd.org; the National Women’s
Health Information Center, 800.994.WOMAN
or 888.220.5446 (TDD), www.4woman.gov/wwd;
and the North Carolina Office on Disability
and Health, 919.966.0881 or www.fpg.unc.edu/~ncodh.
Breast Health Access for Women with Disabilities
510.204.4866 or 510.204.4574 (TDD)
BHAWD is a community partnership that offers
information, support, and resources for women
with disabilities needing breast care. Offers
free brochure, “Breast Self-Examination:
A New Approach” (for women with physical
or sensory limitations).
Center for Research on Women with Disabilities
713.960.0505 or 800.44.CROWD (800.442.7693)
CROWD works to expand the life choices of
women with disabilities so they may fully
participate in community life. Has information
and resources on health, aging, and independent
living for women with disabilities.
800.829.0500 or 212.821.9713 (TTY)
Provides resources, support, and free Braille
translation services for people with vision
loss and health care providers. Free fact
sheets include “Keeping Track of Your
Health Information Center
800.994.WOMAN (800.994.9662) or 888.220.5446
Has specific, detailed health information
for women with disabilities. Call the numbers
above or see the Women with DisAbilities
section of the web site at www.4woman.gov/wwd.
Office on Disability and Health (Chapel
Provides information, resources, free materials,
and a magazine (Orchid) on disability and
health for people with disabilities and healthcare
providers. Has information on insurance and
disability, working with healthcare providers,
and provider’s guides on caring for
women with physical disabilities and removing
barriers to care.
Southeast Disability and Business Technical
Assistance Center (SEDBTAC)
404.385.0636 (also TTY) or 800.949.4232 (also
Provides awareness about the Americans with
Disabilities Act (ADA) and the rights and
abilities of people with disabilities.
Books and More
Self-Examination: A New Approach,
by Breast Health Access for Women with Disabilities
(BHAWD). This illustrated brochure describes
breast self-examination, paying special attention
to physical limitations that may affect women
with disabilities. Contact BHAWD at 510.204.4866
or 510.204.4574 (TDD) or www.bhawd.org.
Let’s Talk About Health: What Every
Woman Should Know (video). Designed to help
women with developmental disabilities feel
more prepared for breast and pelvic exams.
Takes viewer through each exam in a calm
and informative manner. Contact the ARC of
New Jersey, Women’s Health Project
at 732.246.2525, ext. 28.
My Responsibility: A Health Education Video
for Deaf Women (video, 2003). Educates
young deaf women on important health care
issues. Detailed information on breast self-exam.
Models use a sign language interpreter in
a healthcare setting. Contact University
of Rochester Deaf Wellness Center, 585.275.6785.
Ourselves for the New Century: A Book by
and for Women, by Boston Women’s
Health Book Collective (1998). Covers a range
of women’s health issues including
women with disabilities.
Best Advocates: Breast Health for Women
With Disabilities (video, 1999). Presents
four women with disabilities learning breast
self-exam that works for them. Includes demos
showing a partner or care provider doing
the exam. Available in Spanish. Contact Fanlight
Productions at 800.937.4113 or www.fanlight.com.
Healthy: A Curriculum for Women With Mental
Retardation and Other Developmental Disabilities. A facilitator’s
manual to encourage more active participation
in health care, through health education,
anxiety reduction and assertiveness training.
Contact the NC Office on Disability and
Health, 919.843.3531 (voice/TTY) or www.fpg.unc.edu/~ncodh.
Breast Health for Women with Developmental
Disabilities. Developed to
help women learn basic breast health information.
Written in an easy-to-read format, explains
care of self, breast health, self-exams,
and medical visits. Contact Wyoming Institute
for Disabilities, 307.766.2935 or wind.uwyo.edu/breasthealth/handbook.htm.
Breast Self-Examination: A Handbook for
Women With Disabilities
From the Disabled Women’s Network Ontario,
this online handbook describes breast health
issues such as breast self-exam and mammography.
Has information on alternative services for
women with disabilities.
Health Promotion for Women with Disabilities
This web site from Villanova University College
Nursing provides information about many health
issues for women with disabilities, including
The Adaptive MammaCare® Personal
Designed for use by women who are blind or
visually impaired and/or deaf or hard of
hearing. Uses a special life-like breast
model with videotape instruction or open
caption tape for women to learn how to do
breast self-examination at home.