Dignity in death or discrimination in death?

Pakhi/Ragini De

Photograph by Pakhi/Ragini De

In this blogpost, Pakhi/Ragini De explores the stigma surrounding COVID-19 during infection and after death, the amalgamation of COVID-19 stigma with notions of fear and disgust, the COVID-19 protocols surrounding burial and cremation and the difficulties of greiving the loss of kin while protecting oneself from infection. This is a reflection on the often sidelined issues that re-emerged during the current pandemic but also has historical precedents. At the same time, the reflection aims to learn from the devastation caused by the public health crisis so we are better equipped to address these marginalised issues in the future.

“Fear no more the heat o’ the sun,
Nor the furious winter’s rages;
Thou thy worldly task hast done,
Home art gone, and ta’en thy wages:
Golden lads and girls all must,
As chimney-sweepers, come to dust.”

(Shakespeare, William, “Cymbeline”, Act 4, Scene 2)

The last two lines from the play, Cymbeline by William Shakespeare, on the theme of death emphasize how death does not discriminate. In the end, everyone dies, be it the “golden,” wealthy and beautiful “lads and girls” or the poor “chimney-sweepers.”

One witnessed an unprecedented surge in deaths all around the world including in India, during the second wave of Covid-19 in the year 2020. Sama, a gender health and resource group from New Delhi, recently conducted a workshop in Raipur, Chhattisgarh. Participants came from rural areas, hilly, forested areas, as well as urban slums. Hailing from different backgrounds and communities, they collectively shared their experiences on how the coronavirus impacted them economically, physically and psychologically.

They recalled that similar to many other states in India, Chhattisgarh too struggled for ICUs, beds for admission, diagnostics, and other treatment-related medications. For many, testing facilities were not available and reports were hugely delayed and resulting in deaths. The crematoriums and cemeteries were overflowing with dead bodies. The disposal of the dead became a challenge as there was a shortage of coffins, while crematoriums were overwhelmed.

“सरकारी अस्पताल में COVID-19 मरीजों के शवों एक दूसरे पर ढेर हो गए; हर दिन 40-50 मौतों की रपोर्ट होती थी।“
“Dead bodies of COVID-19 patients were stacked one on top of the other at the government hospital. Everyday there were reports of 40 to 50 deaths.”

“शवों के ढेर हो गया था, क्योंकि दाह संस्कार या दफनाने के लिए जगह ही नहीं थी।”
“Bodies piled up as there was no space for cremation or burial.”

Their agonizing experiences raised the spectre of the government’s unpreparedness, particularly during the second wave of Covid-19—probably the worst phase of the pandemic—and its abject failure to strengthen the health system by learning from the lessons of the first wave.

Another important issue raised by the participants was the discrimination and stigma created by the complete lack of information about the coronavirus. While such a virus was absolutely new, the common people were largely dependent on the health system, media and state authorities to provide them with the necessary knowledge about the virus, its prevention, and treatment. But when the authorities themselves were at a loss, especially during the initial outbreak, there was tremendous fear and confusion among the people. Furthermore, such lack of accurate and reliable information – amidst flagrant misinformation spread through social media and word of mouth – gave rise to discriminatory behaviour not only towards individuals who had been infected by the virus but which also extended to those undergoing treatment and those who had recovered. Even the deceased were not spared.

“कोरोना अपने आप में एक भेदभाव है… यह जीवित लोगों के लिए ही नहीं, बल्कि शवों के लिए भी।”
“Corona is a discrimination in itself… not only for the living but also for the dead.”

Cremation, burial, and bereavement are important to all faiths and religions and are very personal and intimate to families, friends, and loved ones. However, individuals who succumbed to the illness were denied their last rites with dignity. Being unable to be close to a loved one at the time of his or her death was devastating for the families. Then came the undignified send-off that was deeply helpless, bewildering, and painful.

“A man from my village and his brother were both affected. With a lot of difficulty, they were able to get admitted into the hospital. Unfortunately, he died. Very soon, the brother also died. It was such a painful experience for the family! All of them had to isolate, and they were strictly instructed to keep away from others.”

The families had to choose between the emotional trauma of grieving alone and coping with the risk of spreading the virus by opening their doors to family and friends. The patient’s family experienced trauma not only from the death of their loved one but also due to the challenges of getting the body released from the hospital’s morgue and arranging the cremation or burial service according to the protocols. During the second wave, no space was available in the crematoriums as there were a large number of deaths. Furthermore, in the absence of ambulances, families were forced to transport COVID-19 victims in auto-rickshaws and private vehicles for cremation.

A participant spoke about the difficulties experienced during the lockdown period. He said, “There are helplines like 108 or 102 that we can call for an ambulance to take the patients to the hospital. But those days, the helplines simply would not respond.”

“हमने 108 और 102 को बुलाया मगर कोई जवाब नहीं आया। इसके अलावा वे कोरोना मरीजों को ले जाने और शवों को छोड़ने के इच्छुक नहीं थे। एक तो कमी (शार्टेज) थी, दूसरा, कोई मानव संसाधन नहीं थे । तीसरा, एंबुलेंस को हर बार कीटाणूरोहित (sanitise) करना, इस को एंबुलेंस चालकों ने बोझ के रूप में देखा गया था।”

“We called 108 and 102, but there was no response. Besides, they were reluctant to take corona patients and the bodies of the deceased (COVID patients). One was the shortage; second, there was no other alternative arrangement; and third, the operators felt it was too much of an effort to sanitise the ambulance every time (a call came).”

Another participant shared that in some places, the few ambulances available were used for COVID patients. However, the families were left on their own to arrange transportation for the bodies for cremation. Everybody was frightened. They felt a strong and deeply rooted sense of irrational dread and menace. It was a heartbreaking and humiliating experience for a large number of people.

These experiences with pandemics are reminders of history and how history is repeated every time there is a crisis in public health. Whether it was the Athenian Plague in 430 B.C., the Justonian Plague in the middle of the sixth century AD, the Spanish Flu Pandemic in the early twentieth century, or the 1896 Plague in Bombay (currently Mumbai), each time we saw how the sick, particularly from the poor, were stigmatised and treated unfairly, as well as how the dead bodies were handled with utter disdain. “…the survivors resorted to dumping the victims’ bodies in the streets or piling them up next to the seashore to rot. The empire solved this issue by excavating huge pits and storing the bodies there. Those holes supposedly contained 70,000 corpses each but were rapidly filled to capacity. Then bodies were placed inside the wall towers, filling the entire city with a foul odour.”

Similar experiences were mentioned in an article in The Wire during COVID-19: “One of the defining emblems of our times is the uncremated corpse waiting for a pyre, wrapped in body bags and hidden from the fear of contamination. These images conceal racialized ideas of disgust, disdain, fear, and filth, all of which are generated and channelled in public by the pandemic. It is necessary to dispose of the infectious deceased from a distance, treating them like “untouchables.”

The Government of India and many state governments like Kerala developed COVID-19: Guidelines on Dead Body Management but implementation is always a question.

“हमें श्मशान घाट के लिये कोई दिशा-निर्देश नहीं पता…जब आप दुुःख में होते हैं, तो कुछ भी मायने नहीं रखता है। लेकिन क्या हमें सहानुभूति और देखभाल की आवश्यकता होती है या नहीं?”

“We never received any guidance or instruction about cremation… When you are in grief, nothing seems relevant. But can’t we expect minimum sympathy and support?”

In times of public health crises such as pandemics, the bodies of the dead people should be treated with respect and dignity. The National Human Rights Commission (NHRC) of India in its Advisory for Upholding the Dignity and Protecting the Rights of the Dead states, “No discrimination in the treatment of the body in any form– To ensure that the dead body is properly preserved and handled irrespective of religion, region, caste, gender, etc.” Further, it states, “The deceased person has the right to a decent and timely burial/ cremation.”

Death comes to one and all, and, the pandemic has brought pain, suffering, and death irrespective of class, caste, race, gender, sex, ethnicity and religion, etc. The haunting memories and the trauma faced by people tell us that this is the time for care, empathy, and kindness—toward oneself and others. And this is indeed a long haul that demands our collective strength and support.

The death during COVID-19 taught us an important lesson in equality. As the poet Francis Duggan rightly observed, death is a great equalizer:

“Some die of natural causes some in a tragic way
But for every single one of us a final night and day
Without respect for the power of wealth and without respect for fame
Death the great equalizer treats everyone as the same
Without respect for anyone or creatures great or small
The billionaires of the World to the Reaper’s scythe do fall
At least the one who does claim every life promotes equality
Amongst the wealthy of the World and those in poverty
Some live on to a ripe old age and some die in their prime
And some even die as children they are not granted much time
Not ageist or discriminatory in any way
He claims the lives of the very young and those who are old and gray
He’s a true egalitarian of him one can only say
And for each and everyone of us a final night and day.”

(Duggan, Francis, “Death The Great Equalizer”)

Pakhi/ Ragini De, English Hons graduate, Classical Ballet dancer, writing for Sama Resource Group for Women and Health.
Author’s note: The essay is based on my first visit to rural and tribal areas of Chhattisgarh with the Sama team. I acknowledge and share my empathy with the people who shared their painful experiences.
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