Beatriz Figueroa: Relinking cancer treatments, incapacity to work, the social security system, and patients economic rights

I met Beatriz Figueroa in cyberspace. We started having e-discussions after I learned about her provocative new awareness campaign, “Life is not the same after breast cancer.” She leads a national e-campaign calling for a law to protect the economic rights of cancer patients. I was humbled and inspired by her work because she pushes her audience to realize the disabling and economic impacts of breast cancer, issues barely addressed in public policy or social support systems. When Beatriz attended a conference I co-organized in Barcelona, Spain in April 2015, the Symposium on Breast Cancer and Feminism, it was an exceptional opportunity to meet her.

Beatriz Figueroa is a journalist and lawyer by training. She worked in Spain for more than 20 years, paying her taxes. Because she was ‘unlucky’ enough to be diagnosed with breast cancer at a time when she was unemployed, her monthly pension is a meager 426 euros ($479 US). This has to cover her mortgage, routine living expenses, and 40 percent of the costs of her medicines, as the Spanish National Health System is increasingly being privatized and failing to provide full coverage.

In addition to surviving breast cancer, she now has to survive poverty.

Beatriz Figuero

Beatriz Figueroa

Beatriz went to court three times to apply for incapacity benefits. Her application was rejected twice. Justifications for the denial included, “no signs of disability” or being “fit to work in other jobs.”

In Spain, for instance, people in the paid work force have the right to be on sick leave for 12 months, with an extension of 6 additional months if needed. After those 18 months, however, they are presumed well and must go back to work. If they are not yet able to do so, they must be legally certified by the Spanish Social Security System to receive incapacity benefits (Employment and Support Allowance). However, almost no one in the country is granted these benefits, leaving large numbers of cancer patients with two non-options:

  1. They must return to paid work even when receiving or recovering from additional treatments.
  2. They quit their jobs because they can’t perform them, losing their income and their rights to unemployment benefits.

With such legal-medical systems in place, women need to go through a court process that is complex, time-consuming, and costly in terms of both money and energy to be granted an incapacity benefit. The court system has not been particularly successful at recognizing women’s complaints’ either, so the court’s rejection of Beatriz’s application for benefits isn’t surprising. What’s more, I learned from my conversations with Spanish women with breast cancer that the mechanisms for assessing long-term incapacity for work are not nuanced enough to capture the ongoing and disabling effects of treatment.

Unfortunately, women’s social and economic vulnerability after treatments is compounded by age, geographic location, and levels of education and training. A great deal of evidence has demonstrated that the labor market discriminates against older women who, incidentally, also bear the burden of cancer incidence. After treatments, middle-aged women, particularly those in manual jobs are virtually unemployable.

A second justification for the dismissal of Beatriz’s claims was based on the supposition that “her family could support her.” This response exposes (hetero)normative assumptions that (1) a woman ought to be married to a male breadwinner and (2) every woman has a nuclear family that will selflessly provide economic support. Beatriz, a single woman who already lost her parents, had no one but the ‘system’ to count on, and it was failing her.

Beatriz Figueroa’s situation is not unique. In my research on Spanish women’s experiences of breast cancer, I found in some instances that the family and/or male partner were unable, or unwilling, to give economic support. Thus, women’s experiences of post-cancer economic hardship and poverty reveal the urgent need to link debates about breast cancer to issues of sexuality and economic justice, and to challenge normative arrangements in the medical, welfare and judiciary systems that are based on romanticized ideas about the family and female sexuality. If this discussion doesn’t happen it won’t translate into policy, and women with cancer who are widowed, single, breadwinners, or otherwise from lower socio-economic backgrounds, will continue to be hit the hardest from the lack of economic protections.

Economic Well-Being Is Quality of Life

Though most would agree that cancer treatments are brutal, there has been little thinking about the impact of the disease on women’s economic well-being in the context of European countries or universal health care systems. The idea that basic access to treatments increases survival rates is so powerful that it takes away from discussions of quality of life. When quality of life issues do surface, they are conflated with survival (i.e., being alive) or reduced to the psychological realm (e.g. mourning processes, self-image, coping strategies and so on).

As Barbara Ehrenreich argued in her classic essay Welcome to Cancerland, a fundamental problem with our understanding of breast cancer is that the culture and industry around it has socialized us into thinking of this disease as soft, glamorous, feminine, and in other words: not scary. Collage art by Bella The Truthteller (below) displays the upbeat and euphemistic trope of survivorship that pretties up breast cancer and hides its realities.

"Beautiful Breast Cancer!!" - collage art made from pamphlets in an oncology waiting room by Bella The Truthteller

“Beautiful Breast Cancer!!” – collage art made from pamphlets in an oncology waiting room by Bella The Truthteller.

When these elements of society and culture combine, there is little space left for discussion about disabling side-effects, unemployment, sickness rights, incapacity benefits, the role of the welfare system, or poverty. Beatriz Figueroa has argued over and over again that breast cancer recovery and survival are political issues, not clinical ones. Access to treatments is necessary but not sufficient to improve patients’ quality of life.

These Women Are Not ‘Crazy’

In her article “Beyond the Yently syndrome,” Anne K. Eckman explains that the Yently Syndrome is a term coined by academics to explain the phenomenon whereby medical professionals misdiagnose women’s health problems due to problematic assumptions about women’s bodies, thereby devaluing women’s experiences and making women invisible in health discourse.

For instance, evidence accumulated over the years demonstrates the failure of biomedicine to diagnose women’s heart attacks, leading to adverse effects on access to treatment, outcomes, and survival. Women’s lack of legitimacy in medical settings also contributes to mental health problems when medical professionals simply don’t believe their complaints. Underpinning such attitudes is the notion that medical differences between men and women are simply related to reproductive organs. The uterus rules women’s minds, turning them into emotional, hysterical hypochondriacs!

Encapsulated in jokes about menopause and menarche, the Yently Syndrome rears its ugly head once again in the case of Beatriz Figueroa, whose doctors would disregard her experiences out of turn. Beatriz had three surgeries and multiple rounds of chemotherapy. She now suffers from fatigue, depression, memory loss, and extreme pain in her fingertips. Yet on several occasions, the health professionals in charge of assessing Beatriz’s incapacity suggested that her ailments were in her head, making her feel “as if she was crazy.”

Reassessing the breast cancer epidemic: If there is not structural change, there is no progress

Despite the barriers she faced, Beatriz went to court a third time to apply for incapacity support. This time, the judge granted her request. Beatriz felt vindicated, and the new status provided an extra 120 euros a month. Unfortunately, the arrangement still fails to give cancer patients economic rights.

First, women’s complaints are not taken seriously in an androcentric biomedical system.

Second, interdisciplinary and gender-aware teams are needed to evaluate economic needs and provisions without women having to deal with the courts independently.

Third, court requires money, energy, courage, and literacy skills. Those who lack robust social networks and/or live in more precarious conditions are less likely to be persistent in taking their cases to court, minimizing their chances of their rights being recognized. This, in turn, increases economic inequalities and promotes poorer, not better, health.

Beatriz argues that unless deeper structural changes occur there will be no progress. Indeed, factors outside the health care system, such as policies relating to employment and incapacity, may also increase ill-health. The Due North report (PDF) analyzed root causes of health inequalities across the north of England and found that, “When people develop chronic illness, […] integrated support across agencies to keep people employed and maintain financial security can help prevent a downward spiral of poverty and poor health that exacerbates inequalities.” These finding apply country-wide, and beyond.

IMG02 BC Campaign by Figueroa

Breast Cancer Awareness Campaign by Beatriz Figueroa “Life is not the same after breast cancer”

“Life is not the same after breast cancer.”

Beatriz Figueroa is proposing legal reform to guarantee decent economic well-being for cancer patients and survivors. Her campaign – “Life is not the same after breast cancer”– is not about creating solidarity; it is a demand for social justice. Complicating the rhetoric of survivorship that centers on access to treatments and years of survival while omitting other factors vital for getting on with life during and after cancer treatment, it rejects the commonly held assumption that women are somehow responsible for making themselves well.

[Here is Beatriz Figueroa’s website.]

As a part of the campaign, Beatriz produced a short, powerful video with fisherwoman Raquel Castiñeira as a call for the integral legal reform needed to improve social security for women treated for cancer.

Raquel Castiñeira was diagnosed with breast cancer in 2010. Her arm was permanently damaged by surgery. But the Yently Syndrome Anne Eckman so aptly described and Beatriz Figueroa personally confronted strikes again when the Marine Social Institute that is responsible for workers in the maritime-fishing sector told Raquel she was “fit to work” and could “do the work with the other arm.” Otherwise, “her husband could work for her.”

For Beatriz Figueroa, forcing women to labor while in treatment or ill, or placing the burden of their economic security on their families is neither the kind of social safety net that is ethical for civil society nor productive of a healthy workforce. Many impoverished cancer survivors in Spain would be apt to agree with her.

You don’t need to speak Spanish to understand the video below. You need only empathy and a bit of context. The video ends: “Raquel is recovering from breast cancer. Patients like her shouldn’t be working. Sign the petition.”

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