BHAWD Mission Statement - To increase the access of women with disabilities to breast health information, screenings and early breast cancer detection

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Women with disabilities are equal partners in all aspects and stages of project planning, implementation, and ongoing development of our initiative s.. With their input, as well as from focus groups, task forces and a wide representation of committee members in several BHAWD committees , BHAWD is creating culturally competent programs that address the health needs of women with disabilities. With their input BHAWD is creating consumer driven, culturally competent programs. BHAWD maintains a commitment to consumer direction and to enhancing the ability of women with disabilities to take control of their own lives.

Evolution of the Concept: The idea for BHAWD began with Judi Rogers, a breast cancer survivor and ambulatory woman with cerebral palsy. Through self-exam Rogers detected two large lumps. Mammograms were negative, but because of what she herself had found, she continued seeking breast health care. Eventually, two large, slow -growing tumors were discovered and Rogers underwent a modified mastectomy followed by chemotherapy. From her own experience Rogers kept wondering what would happen to her friends who were unable to do adequate self-exams because of limited use of their hand s.. After her treatment, Rogers kept wondering if the involuntary spasms from her cerebral palsy had made it more difficult for the mammography machine to detect her cancer. "Could the mastectomy have been prevented?" she asked herself.

Early in 1995, Rogers raised this question with the coordinator of Alta Bates Summit Medical Centers Breast Consultation Services. She asked if cancer could have been detected earlier had she been able to do thorough breast self- exams. The coordinator was astonished. Never, during her 30 years of oncology nursing, had she thought about the relationship between breast cancer detection and disabilities. Since that time, the coordinator has spoken with many colleagues in the medical community and has found that no one else gave thought to this problem either.

Following the incident, Alta Bates Summit Medical Center convened discussions with the Center for Independent Living (CIL) and United Cerebral Palsy of the Golden Gate and BHAWD was born. Representatives from the above organizations with the addition of Community Resources for Independent Living, (CRIL), and consumers with disabilities comprise the BHAWD Steering Committee.

BHAWD has accomplished and learned a great deal in the last ten years. BHAWD is the first program in the nation and perhaps the world to target breast screening outreach to women with disabilities and to establish a special accessible breast screening clinic for women with functional limitations. Through these efforts and through professional and public education, media activities and community collaboration, BHAWD has raised the consciousness of many individuals and groups about the breast screening needs of women with disabilities. BHAWD has created awareness about the multiple barriers that limit women with disabilities' access to breast screening services

Background

Women with disabilities are generally not identified as an under served population for purposes of breast screening and early detection services although they have less access to breast health services than any other group of women. When women with disabilities want to have mammograms or clinical breast exams, the majority cannot do so because of numerous barriers unique to their functional limitations -- barriers that do not limit accessibility for other women.

Various physical impairments affect abilities to perform all methods of breast screening. Women with limited hand and arm function, with lack of sensation in their fingertips, and with low vision are unable to perform BSE according to recommended procedures. Many women who use wheelchairs cannot transfer themselves or be transferred onto standard examining tables. Similarly, women using wheelchairs are unlikely to find accessible mammography machines to accommodate them in their chairs. And women (including seniors) who have tremors, who experience spasms, or who lack the stamina to stand at an imaging machine also should be seated for accurate screening.

At the same time, women with disabilities confront a multitude of economic, social, psychological and cultural barriers that impede or preclude their access to breast health screening services. Moreover, women with disabilities in the Northern California Bay Area, like their non-disabled peers, face among the highest incidences of breast cancer in the nation.

Nevertheless, prior to 1995, when BHAWD was established, women with physical disabilities were all but invisible to the major breast cancer research advocacy and service community despite having equal or greater risk of cancer. Since BHAWD began its important work additional local, regional, and national attention has been given to breast screening services for women with disabilities by breast cancer organizations, the medical community, the disabled community, social service providers and governmental health organizations.

BHAWD is a program of the Rehabilitation Services within the Alta Bates Summit Medical Center. Click here to link to the Alta Bates Summit Rehabilitation Services web site at http://www.altabatessummit.org/clinical/rehabservices.html

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Breast Health Access For Women with Disabilities (BHAWD) Honored by the California Department of Health Services, Office of Women’s Health

Breast Health Access for Women with Disabilities (BHAWD) has been selected as the recipient of the second annual- annual Helen Rodriguez- Trias Award for Excellence in Community-Based Women’s Health Leadership Award. Accepting the award for BHAWD were Steering Committee member Judi Rogers, and Florita Maiki, Manager of BHAWD. The award was presented by Elizabeth Saviano, Chief, Office of Women’s Health on May 14th at the California Women’s Health Council Meeting.

The Office on Women’s Health(OWH) established the award to honor the memory of Helen Rodriguez-Trias, M.D. , a founding member of the California Women’s Health Council and an internationally known advocate for women’s health. The award honors an organization or individual who has demonstrated effective leadership to promote women’s health at the community level.

BHAWD was selected from a number of impressive nominations throughout the state. BHAWD was recognized for its efforts in developing and continuing to provide breast health screening services specially designed for women with disabilities and for its contributions to the medical provider and disability communities for continuing to increase awareness and save lives.

Back to Announcements.

Goals and Objectives

Breast Health Access for Women with Disabilities (BHAWD) is a community partnership established in 1995 with free clinical services in 1997. It is a nationally recognized model for leadership and collaboration in increasing health services and accessibility for women with disabilities.

BHAWD has four primary organizational goals:

BHAWD has developed specific goals, objectives and activities in five areas to accomplish its organizational goals. These areas include: clinical services, educational outreach, professional education, research, and advocacy. Key BHAWD strategies include extensive input and participation by women with disabilities in all facets of its work, unique collaboration between a medical institution and grassroots organizations and between rehabilitation and oncology services, and development of and sharing information with other organizations about replicable clinical, professional and community education and training.

What We Believe

Personal Stories

SYDNEY CASE - MY SPIN: Another Trip To Margaritaville

What could cause gut wrenching fear in the heart of a radical female disability rights advocate? An annual visit to the "pit of the damned," or as some less experienced call it -the gynecologist's office. Part of the problem is the lack of proper equipment, such as lower examination tables. But by far the worst cause of dread is the lack of sensitivity.

I'm still not sure if this was a physical or an alien abduction. Yes, I remember the nurse tossing a gown on the table, saying, "Get undressed." Easy for her to say. She leaves and I throw my upper body across the examination table determined not to ask Nurse Ratchet for help. I'm face down struggling to get undressed when the door opens.

"Are we ready?" asks the nurse. My blouse covers my eyes and my stockings are around my ankles. I calmly mention I need just a few more minutes. Thirty seconds later there's a light tap.

Before I can say a word, in walks the doctor. She chuckles and says, "May I help you?" Help me? What makes you think I need help? I'm hanging here like a beached whale nude from the neck to my ankles, clothes dangling from my feet.

With all the dignity I can muster I reply, "I've almost got it." Finally I get the imperatives off and the gown on. The nurse steps up to me, two inches away (I think I see China from her nasal passages).

"Now, hop up here." Hop?

"I don't think so," I reply.

"Sure, you can do it, even our elderly patients can jump up here."

"Well, I can't."

The nurse leaves the room and returns with two strange men. I scramble to find something to cover up with. "These two men will lift you up on the table."

"Not on your life!" I say. It's bad enough for your doctor and a nurse to see you in this position. No way will I allow two strange men to see me like this!

"It's okay. They work in our office and won't think anything about seeing you nude." I ask both men if they would strip nude and spread-eagle for me. I want them to feel the same humiliation I feel. They back out of the room real quick.

Then the doctor says she and the nurse will help me on the table. They start pulling arms and legs. Finally I'm on the table and the nurse places my left foot in the stirrup. As she lets go of the left foot and reaches for my right, my left leg falls off the table. So she lets go of the right leg to catch the left and the right leg falls off the table. Now I know how a wishbone feels.

The nurse realizes she needs help and goes for another nurse. They now have control of my legs but the table is too high for the doctor. She steps on a button on the floor and suddenly the entire upper portion of the table drops. I roll off the table and my feet go flying. I am lying there with my bare bottom in the air thinking how ridiculous this all is. Then I start to laugh and can't stop. With the doctor and both nurses pulling my legs and arms in different directions, I say "Please stop. Let me laugh." Finally we all sit on the floor and laugh till we cry. Now the chore is how to get me back on the table. Where is a forklift when you need one?

Finally back on the table, exhausted from pain, frustration and embarrassment, I hear the nurse from hell say, "This would be a lot easier if you would lose weight." Every hair on my head stands up. I turn and say, "This would be a lot easier if you had a lobotomy"

The doctor loses it again and says, "That's just what she deserves."

So my annual visit to the pit is over, and once again I've survived. I tell the doctor and nurses as I'm leaving, "I don't know about you ladies, but I'm ready for a double margarita!"

Sydney Case is a corporate personnel manager and the founder/president of the River Valley AccessAbility Council in Russellville, Ark.

Reprinted by permission from New Mobility magazine

AI COX

Meet Ai Cox, a senior women in Oakland who suffered a stroke three years ago and now has limited mobility on her left side. "The (BHAWD) center works well for me," she notes. "I go for a physical exam every six months . They give me excellent service and are so nice and kind."

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PAULINE HORVATH

Similarly, Pauline Horvath, a wheelchair user and Oakland resident, has become a regular patient at BHAWD. "I heard about it from the Center for Independent Living, and I've been going since it opened. There aren't any services elsewhere with such one-on-one assistance for women with disabilities," she explains.

In addition to the personalized service, Horvath benefits from the examination table which can be lowered to provide her easier access. "I feel more relaxed right from the start because it's not painful to get on the table," she says.

For Horvath, regular visits are imperative. Her severe arthritis so affects her hands that she can't do a self breast exam at all, so she relies on the center for breast health care.

"I feel comfortable because the nurse has shown me a breast model and she takes great notes, so she can note any differences from the last visit. She always answers my questions clearly and carefully. I get an hour-long appointment for education, checking and comparison with past exams."

During one visit a lump was detected. Fortunately, it was benign.

"I go every three months, partly because I can't examine my own breasts. They take a keen interest in our health. It's peace of mind for me."

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KATHLEEN LANKASKY

As Director of the Women's Health Project for United Cerebral Palsy of Alameda and Contra Costa counties, Kathleen Lankasky is an advocate for women with disabilities, working on their behalf for access to health care that some non-disabled women take for granted.

As a woman with cerebral palsy herself, she also knows how difficult it can be to obtain something as basic as a mammogram. "Cerebral palsy leaves you with a lot of uncontrolled muscular movement, and the moment the technician says relax and hold still, I jerk," she explained. "They can't get a clean film. On one occasion I had to have eight x-rays taken on one side, and five on the other, before they had a decent picture. I'm concerned about that much radiation going into my breasts."

Ms. Lankasky required special help to learn to do breast self-exam. "You use different levels of touch in self-exam, and because of my muscular control difficulties, I could not change the level of pressure quickly enough," she explained. "At Breast Health Access for Women with Disabilities (BHAWD), they worked with me to show me how to do my entire breast with one level of pressure, then again and again with different levels. There's the partnership they have with disabled women."

Ms. Lankasky has been collaborating with BHAWD since its inception. "I feel that BHAWD has opened a door to care that was closed to us," Lankasky said. "It's a door to early detection that is critical to us as women. BHAWD is helping the medical community realize that women with disabilities are more than their disabilities; they have the same health needs as other women do."

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Meet the Staff

Steering Committee

National Honorary Committee for BHAWD

Donor Acknowledgements

BHAWD would like to acknowledgements the following donors for their support in BHAWD's web site

Alta Bates Summit Foundation: The California Endowment, The Susan G. Komen Breast Cancer Foundation San Francisco Bay Area Affiliate, The California Wellness Foundation: Christopher Reeve Paralysis Foundation: The Hearst Foundation, Inc.: The J.M. Long Foundation; The San Francisco Foundation; Thomas J. Long Foundation, Women's Foundation; Wells Fargo Foundation:

If you have any questions, please contact BHAWD's Manager at 510-204-4522.

Maintenance and compliance with Bobby AAA requirements by:
Mort Lankasky, Consultant / Webmaster
Designs by Mort
11001 Central Park Drive NE
Albuquerque, NM 87123
Mlankasky@comcast.net

HOME | VISION | NEWS | SERVICES & PROGRAMS | TOOLS & LINKS | RESEARCH | FAQ | DONOR INFO | VOLUNTEER | PUBLIC POLICY | BHAWD Order Form | CONTACT US | SITE MAP |