When will we start caring for our caregivers ?

Shobha Shukla *

A Lancet Commission report investigating the nexus of "Women, power, and cancer" says that "patriarchy dominates cancer care, research, and policy making."

The report underlines that "women experience gender bias, and are subject to overlapping forms of discrimination, such as due to age, race, ethnicity, socio-economic status, sexual orientation, and gender identity." These intersecting factors "restrict a woman's rights and opportunities to avoid modifiable cancer risks and impede their ability to seek and obtain a prompt diagnosis and quality cancer care."

But cancer is not the only disease that afflicts women.They battle a plethora of illnesses and an equitable access to healthcare services eludes a vast majority of them. Women are often diagnosed, if at all, in more advanced stages of any disease. The long-time interval between the first presentation of symptoms- be it a communicable disease (like TB, HIV, etc) or non-communicable disease (like diabetes, hypertension, cardiovascular disease) and final diagnoses not only makes recovery more difficult but also puts them under tremendous physical, mental and economic stress.

The report authors concede that "Globally, women's health continues to be focused on reproductive and maternal health, a patriarchal construct that is aligned with narrow anti-feminist definitions of women’s value and roles in society."

All of us want to remain healthy. Then why is it that women often seek healthcare services very late, (or not seek them at all) as compared to men? And adding fuel to fire is that more often than not, we unconsciously put the blame on the woman for being careless regarding her health and for delaying seeking medical advice.

This is akin to blaming the victim for her deplorable situation (and poor health seeking behaviour) rather than focussing on the perpetrator- skewed social norms and gender roles arising out of patriarchy and toxic masculinity.

Why are caregivers not care seekers?

The primary role of a woman is taken to be that of a caregiver, and not a care seeker. And this is not due to the presence or absence of any gene. Granted that women and men are biologically different, is there any gene that prevents men from doing household chores and childrearing, or is there any gene that puts the onus of these on women alone? Surely not.

It is not any genetic construct, but a social construct that arises from the deep rooted patriarchy that seeps deep in every nook and corner of a woman's life and manifests itself in myriad ways due to which she suffers exploitation and discrimination at every stage of her life. These are not genetic problems but are due to gender inequality. They are due to the distorted patriarchy that is present in families and manifests itself in several ways.

Caregiving has been feminised and women have been moulded into nurturing roles which often go unrecognised by their family members, as well as by healthcare systems. It is mostly girls and women who are primary caregivers for the family. They are expected to prioritise the needs of the other family members- from an infant to the oldest member- at the expense of their own health, and this often results in women’s postponement of seeking healthcare for themselves.

It is not uncommon for the females of the family to keep on doing household chores despite being sick. Any early symptoms of any illness are brushed aside by all. They ignore their health problems, and the menfolk also do not pay any attention, until they become so sick that they are unable to manage the house and family. It is only when she is bedridden that the gravity of the situation hits everyone.

Very often I have heard this remark from my female acquaintances- "I cannot afford to get sick." Why? Because, it would disturb the smooth running of the family; and/or it will drain the family finances. So best is to keep things under the carpet, until the carpet starts stinking itself.

It is the 'gene' of patriarchy that manifests in poor health seeking behaviour of women and prevents them from seeking timely diagnosis and treatment. It is this very 'gene' that permits menfolk to escape the chores of child rearing and become equal partners in running the household. And I quote from the report: "Since gender norms often exclude men from participating in childcare in many settings, covering these care-taking roles can act as a barrier for women to seek care for their own health needs."

Unpaid care work has a direct bearing on the wellbeing of an individual. It includes, among other chores, the time spent in cooking, looking after children, and taking care of those who are ill. Globally, women and girls perform more than 75% of all unpaid care and domestic work is performed by women and girls, which is more than three times than that done by men. Also, two-thirds of care workers are women.

Gender roles arising out of patriarchal social norms are often very different for men and women, and lead to gender inequalities, including limiting access to healthcare. Idolising ‘homemaker’ and ’motherhood’ role, gives ‘(un)graceful escape’ to men from child-rearing and household chores, putting their onus on women. All this acts as a barrier for women to seek care for their own health needs.

Even when a woman recognises the need to seek healthcare, gender norms often restrict her choice of when and where to seek or access care. She is faced with inequities in treatment, care and access to healthcare, due to social discriminationthat prioritises the health needs of men, as the latter are considered to be more valuable.

So while women are acknowledged as the primary caregivers in families, little attention is paid to their own health and well being. In many countries of South Asia, including parts of India, it is not uncommon for women to eat after the menfolk have eaten, and men are prioritised over women (and even children) if there is limited nutritious food available in the household.

It is no wonder then that women are far more likely to suffer from anaemia (the leading cause of which is dietary iron deficiency) than men. According to a study conducted by the Institute for Health Metrics and Evaluation (IHME) and published in The Lancet Hematology, 444 million men and 825 million women were diagnosed with anaemia in 2021.

"Gender inequalities related to household food consumption and division of labour probably exacerbate disparities in conditions such as anaemia, because women might be the most likely among household members to be affected by food insecurity, and to lack access to sufficient quantities of iron-rich foods, and be less likely to receive health screening and care, whether due to domestic work demands, lack of autonomy, or prioritisation of other family members' care," said the study authors.

Citing data from the National Family Health Survey 2019-2021, the "Women and Men in India 2022" report released by the Ministry of Statistics and Programme Implementation in 2023 shows that prevalence of anaemia in women aged 15-49 years has increased by 4%- from 53% in 2015-16 to 57% in 2019-2021. This is yet another worrisome trend of women’s health. Anaemia is an indicator of both poor nutrition and poor health, and failure to reduce it can result in impaired health and quality of life for millions of women, including adverse health outcomes in children born to anaemic mothers.

All of us- women and men alike- need to be responsible towards our health and wellbeing. Women will have increased awareness of cancers and other diseases that they deal with, either directly or indirectly, only when they become more conscious about their mental and physical health and health seeking behaviour.

But for this, they have to free themselves from the poisonous patriarchal setup, and men have to free themselves from toxic masculinity. Most often men fail to see these ills of society. They do not even realise the special entitlements and privileges they enjoy by virtue of being born a male, while women are deprived of them just because of being born a female (and not because of any genetic defect).

Is there any man who has not reaped the benefits of gender inequality? Is there any woman who has not suffered this inequality at some point of her life?

Every humanitarian or health response has to be a feminist response. We need feminist systems. That does not mean putting the current development model in the hands of women. It means having a different kind of system that is based on sharing and caring. The opposite of patriarchy is not matriarchy- it is feminism. Patriarchy is about using power and violence against other people in order to gain power. Feminism is about using care and solidarity to redistribute and share power.

A feminist health system is one that is socially just and ecologically sustainable for everyone everywhere. It recognizes the power of communities when they take ownership of their well-being. A people centric feminist approach to improve health seeking behaviour as well as access to disease prevention, treatment and care is key.

I firmly believe that a world of solidarity can only be a feminist world where everyone - irrespective of their caste, creed or sexual orientation- can have a dignified, respectful and healthy existence.