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 modern woman’s 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, 1997).

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.

— North Carolina focus group participant,
North Carolina Office on Disability and Health, 1998

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 (ADA).

Some of the challenges faced by women with disabilities include:

• physical barriers such as buildings, examining rooms, and medical equipment that are not geared for women with particular needs;
• lack of adequate transportation and support services to keep appointments, run errands, or receive medical care;
• financial restraints;
• lack of reliable, inclusive, accessible health information and services from healthcare providers that address their needs; and
• Lack of disability knowledge and sensitivity
  of providers.

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 medical equipment.

Most hospitals and doctors’ offices 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 you’re afraid of getting hurt.

— from Breast Health Access for Women with Disabilities (BHAWD), www.bhawd.org

Women with disabilities may have various physical impairments that may affect their ability (or their healthcare provider’s 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.

Mammogram–are you kidding? I’ll never go through that ordeal again. I can’t balance or hold still long enough for them to get a good picture!

— from Breast Health Access for Women with Disabilities (BHAWD), www.bhawd.org

Medical and societal biases can also be a barrier for screening and treatment. Healthcare providers may
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 for the
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 do?
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 Healthcare Providers

• 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.
• 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.
• Be 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 you understand.
• 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 visit.
• 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 manner.

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 and support.

Portions 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.

RESOURCES

Organizations

Breast Health Access for Women with Disabilities (BHAWD)
510.204.4866 or 510.204.4574 (TDD)
www.bhawd.org
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)
www.bcm.tmc.edu/crowd
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.

Lighthouse International
800.829.0500 or 212.821.9713 (TTY)
www.lighthouse.org
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 Medications.”

The National Women’s Health Information Center
800.994.WOMAN (800.994.9662) or 888.220.5446 (TDD)
www.4woman.gov
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.

North Carolina Office on Disability and Health (Chapel Hill, NC)
919.966.0871
www.fpg.unc.edu/~ncodh
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 TTY)
www.sedbtac.org
Provides awareness about the Americans with Disabilities Act (ADA) and the rights and abilities of people with disabilities.

Books and More

Breast 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 Body, 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.

Our Bodies, 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.

Our Own 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.

Women Be 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.

Women First: 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.

Web Sites

Breast Self-Examination: A Handbook for Women With Disabilities
dawn.thot.net/BSE_Handbook.html
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
www.nursing.villanova.edu/WomenwithDisabilities/welcome.htm
This web site from Villanova University College of
Nursing provides information about many health issues for women with disabilities, including breast health.

The Adaptive MammaCare® Personal Learning System
www.mammacare.com
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.