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I'll never forget how shocked I was when Rhode Island Breast Cancer Coalition chair Marlene McCarthy told me that her daughter Kate McCarthy-Barnett, who uses a wheelchair, called from the doctor's office one day because she needed someone to physically prop her up while she had a mammogram.
One of the primary goals of women's cancer advocacy has been to ensure quality care for all. But when McCarthy called, I realized there was a large group of women-up to 26 million in the United States alone-who did not have equal access and hadn't been included in the advocacy agenda as I knew it.
So let me say now, in honor of National Breast Cancer Awareness Month (NBCAM): Women with disabilities are part of our community, and we must not forget them.
MAMM senior editor Christine Haran has gone a long way in exploring this problem. In "Services Denied," she looks at the physical barriers to cancer screening for women with disabilities -inaccessible changing rooms and exam equipment, absent TDD machines for the hearing impaired, a shortage of material in Braille for women who are blind. But, as Haran discovered, attitudinal barriers are as much a problem as physical inaccessibility. Her reporting revealed stories of insensitive, sometimes unthinking providers, and of medical schools that have failed to make them aware of the special health care needs of women with disabilities.
But creative solutions to the problem of inaccessibility are possible. just take a look at innovative centers like The Women's Clinic for the Disabled at the University of Alabama Spain Rehabilitation Center in Birmingham and at Breast Health Access for Women with Disabilities at the Alta Bates Medical Center in Berkeley, California. Both offer comprehensive health services that are models for quality care. Moreover, a wheelchair accessible exam table that at least one provider in every locality should have has been designed by the enterprising Sandra Welner, MD.
Unfortunately, there are too few centers and providers like these-despite the fact that under the federal Americans with Disabilities Act (ADA), accessible care for these women isn't just a good idea, it's the law.
Every year, when people ask me what MAMM is doing for Breast Cancer Awareness Month, I get cranky, because every month is Breast Cancer Awareness Month at MAMM. (The same is true for gynecological cancers, and we're committed to improving our coverage in that area.) This year, however, for NBCAM, we're calling for the integration of women with disabilities into the women's cancer agenda.
When you meet with health care providers, talk to the media or speak at events, remember to include this population in the,universe of women affected by cancer. Include women with disabilities in your organization's materials on screening and treatment. Spot check your mammography center for accessibility, and inquire whether your gynecologist has an accessible exam table.
And there's another way we can help make appropriate care possible. If you or anyone you know has been denied accessible screening or treatment, please send an e-mail to me at GwenD@mamm. com. MAMM will collect these complaints and forward them to the U. S. Department of justice, which investigates possible ADA violations. This October, let's help ensure that the quest for quality cancer care includes every woman.
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