Advocating for Accessible Mammography for All
Throughout the Bible, Jews are referred to as the “chosen people.” There are many interpretations and debates about whether this nomenclature applies only to Jews, and if so, about the specific meaning of “chosen.” I believe all people are chosen to make a difference, and in that spirit, I am sharing my story as it relates to breast cancer.
I became a quadriplegic at age 16 and have dealt with many health challenges since then. Approximately nine years ago, I developed significant pressure sores that required surgery. Although the surgery was successful, I had serious complications that kept me hospitalized for seven months. I was on a ventilator, then had a tracheotomy. There were multiple chest x-rays daily, as well as CT scans.
When I finally returned home, I was extremely weak. Two months later, in June, I celebrated my 43rd birthday. June was also the usual time for me to get my yearly mammogram. Despite my health challenges, off I went to get screened. Ironically, the day before my appointment, my aide, while putting my bra on me, had felt a lump in my right breast. We attributed it to dense tissue.
For people who use a wheelchair, getting mammograms is what I call ugly gymnastics. Even if the machine goes up and down, it is impossible for me to maneuver close enough to get my breast in place, which means I also have to lean over the machine. It takes two people to push and hold my upper body. My head resting in the right position hurts my neck because of the tracheotomy. Ugly – and painful – gymnastics, indeed.
After the mammogram, I heard whispers among the technicians, including the word “comprehensive.” I knew that couldn’t be good and I endured more uncomfortable and ugly gymnastics. When the technicians left the room, a doctor entered and she told me I had a lump in my right breast and a biopsy was needed. Then she said, “You’re in luck, the biopsy can be done today.”
I was admittedly nervous and as I reclined my chair for the needle biopsy (which is not the recommended way to conduct this procedure), all I could think was why, after all I had been through, was I chosen to endure this?
A few weeks later, on July 7, 2010, at exactly 3:30 p.m. as I was resting in bed, my gynecologist called. He apologized for telling me over the phone, but said bluntly, “You have breast cancer.” It was devastating news.
Lucky for me, it was stage I and not aggressive. I did not need chemotherapy, but even if I had, I was not strong enough to get it. The oncologist suggested a lumpectomy followed by radiation, but I explained that because of my disability, I could not feel heat so that was not an option. Instead, I opted to have a full mastectomy with no follow-up treatment or drugs because of the negative impact on bone density, which was already a problem I was facing.
I also had genetic testing because of my Ashkenazi Jewish descent. According to the CDC, 1 in 40 Ashkenazi Jews has a BRCA gene mutation, the most widely known genetic factor that can lead to breast cancer. My test results were negative. I will never know the cause of my breast cancer, but my suspicion is that it was caused by the intense radiation I needed because of my breathing complications after the pressure sore surgery.
Most women with disabilities avoid getting mammograms. The screening procedure is uncomfortable and inaccessible. What’s more, people with multiple chronic conditions avoid getting many preventative tests, including mammograms. There are very few Jewish quadriplegic female breast cancer survivors, and our numbers aren’t in existing data.
My experience with breast cancer has been a call to action. Moreover, I believe I have been chosen to fight for this important cause.
As an eight-year survivor, I have spent countless hours advocating for accessible mammography: informing survivors, navigators, and caregivers about the need for accessible equipment; contacting radiology providers; and reaching out to medical personnel at facilities that perform mammograms.
Giotto, an Italian company, makes a fully accessible mammography machine that, like the x-ray apparatus in a dentist’s office, comes to the person – without the need for any ugly gymnastics. It is the answer for those with disabilities, rotator cuff injuries, and would, in fact, make mammography easier and less uncomfortable for everyone. Why isn’t it available nationwide? Why do hospitals, radiology facilities, and other entities keep purchasing the same machines from companies that don’t sell fully accessible machines?
The time to break down this barrier by advocating for accessible mammography is now. Women are living longer, men are being diagnosed with breast cancer, and one in three individuals will develop a disability in his or her lifetime. Inform your medical provider and mammogram facility about the Giotto machine and encourage women with range of motion challenges that make mammography difficult to do the same. Fully accessible mammography is a win-win for all, and our collective voices will make a difference. Advocating for the greater good, after all, is a central mandate in our religious and civic tradition.
For more information about how the Reform Jewish Movement engages in social justice work to promote equal rights and health care for people with disabilities, visit the Religious Action Center’s Disability Rights page or join us in Washington, D.C. for the 8th annual Jewish Disability Advocacy Day on Capitol Hill.