Confronting realities: The girl child and retinoblastoma treatment in India

A child with a white eye reflection as a result of retinoblastoma [Courtesy: Wikimedia Commons]
Not all diseases get the same kind of attention from the global medical community in their search for potential cures – for various reasons. But is the availability of an effective medical cure enough to treat the disease? Pankaj Sekhsaria deals with this question in his recent article How Users Configure Producer Identities: Dilemmas of Retinoblastoma Treatment in India (Economic and Political Weekly, Oct 7, 2017).

Retinoblastoma, a malignant eye tumor was associated with certain death until a century ago. Thanks to sustained efforts and medical advancements, the survival rate increased from 5% in 1896 to 81% in 1967. Yet infant children in India continue to suffer due to this form of cancer, retinoblastoma being one of the top five childhood cancers in the country. Sekhsaria attempts to explore why India continues to have the highest number of children with retinoblastoma in the world.

Healthcare in India may have been in the news recently for all the wrong reasons. But Sekhsaria notes how the “orphan cancer” – retinoblastoma (because it is not as commercially profitable as breast or prostate cancer) has found a home in at least two leading medical institutions in India. Based on his ethnographic experience at these centres, Sekhsaria makes some keen (and startling) observations.

Sekhsaria learns from the clinicians, and also observes the families of the girl children affected by retinoblastoma, that parents sometimes hesitate to get their girls treated for the cancer – because the treatment involves “enucleation”, that is, removal of the affected eye. The parents would even go to the extent of letting their children die a premature death than let them live with the affected eye removed. Why? “…because no one would marry her when she would be of a marriageable age.” The historical discrimination against the girl child continued to play havoc in the lives of infants affected by retinoblastoma even when the treatment was available in India.

Despite having access to the latest technologies (nanotechnology, in this case) and access to free treatment (for economically weaker sections), the medical fraternity was still not able to treat the patient – “the problem is as much social as it is technical”. Responding to this, Sekhsaria observed, the clinicians donned a new role – that of a social worker. They  assembled a team of social workers to reach out to the families and to monitor if their children were brought to the clinic for regular treatment.

The other significant observation Sekhsaria makes is that the girl child, despite being the “primary user” of the treatment”, has no voice of her own. It is her family which gets “configured” as the user and makes life or death decisions on behalf of her. The clinician, on the other hand, has to go beyond the usual role of a service provider but also “treat” the social, cultural, religious and economic realities of the patient’s family.

Sekhsaria’s article is a valuable addition to the literature on social studies of science and it also brings to the fore the dilemmas associated with the clinician’s practice. A medical intervention remains useless unless the patient (the girl child here) is valued for what s/he is as a person.

The solution is not just social or not just technical but involves the “coming together of various strands” – clinicians donning the social worker’s hat, new technologies which can fight the cancer and sustained efforts to raise the status of the girl child. It is not enough “to produce more innovations or better identify user-driven innovations … the wider goal [has to be one] of political emancipation”.


Describing nature to a daughter – from a prison camp

1934 Sketch by Alexey Wangenheim [Courtesy: Wikimedia Commons]
Ever since humanity stepped into the era of the Internet, the art of letter writing began its slow descent into oblivion and is now lodged in the limbo of pleasant nostalgia. The jury is out on whether we ought to feel sad about the loss of the handwritten letter but many of us would acknowledge that some of the best known works in literature came to us in the form of letters. More specifically, history looks favourably upon those literary works that emerged from within the four walls of a prison cell.

Long before he became the first Prime Minister of independent India, Jawaharlal Nehru spent several years in prison for dissenting against the government in British-occupied India. Like  his mentor Mahatma Gandhi, Nehru also spent his days in prison, writing – specifically, writing letters to his daughter Indira. Among these letters, those introducing his daughter to the vast expanse of global history hold particular relevance in the literary world. This collection of letters was published as Glimpses of World History in 1934.

In 1934, another father holed up in prison began writing letters to his family, particularly to his daughter. But this father was not as fortunate as Nehru was, for he ended dying in prison. The man was Alexey Feodosievich Wangenheim, the meteorologist who was sent to the Solavki prison camp in 1934 for alleged counter-revolutionary activities against Joseph Stalin’s Soviet Union. Continue reading “Describing nature to a daughter – from a prison camp”

Knowledge Swaraj: an Indian manifesto on Science and Technology

ksThe Knowledge Swaraj manifesto is a document developed through a collaborative effort of academics and activists of the Knowledge in Civil Society (KICS) network in India. The key points of this document are presented in this post. The complete manifesto can be read online on the KICS website.

  1. What is “Knowledge Swaraj: The Indian Manifesto on Science and Technology”?
  • It is a document inspired by Mahatma Gandhi’s Hind Swaraj and asks what Swaraj means for the domain of Science and Technology (S&T) in 21st century India.
  • It argues for Indian self rule of a knowledge democracy, which draws its agenda for S&T from the needs of the Indian people

Continue reading “Knowledge Swaraj: an Indian manifesto on Science and Technology”

Exploring the concepts of spirituality IV: Roots in Hinduism

Hindu monk in Bangladesh [Courtesy: Wikimedia Commons]
Beginning with an attempt to explain why spirituality is such a craze today, we then explored the roots of spirituality in Judaism and in Christianity. Moving towards the East, Margaret Chatterjee finds that despite its pre-Christian roots, the concept of spirituality is essentially a Christian one in character. If we are to borrow this concept to other cultures, then we ought to be a bit careful.

The closest root terms that we have to spirit and spirituality in the Indic group of religions are atman and sadhana. While the Christians distinguish between the human spirit and the Holy Spirit (with a capital S), the atman does not see any such distinction. Sadhana shares a similarity with spirituality in that both refer to a path or a goal. Yet Sadhana has its goal as moksha or liberation, while Christian spirituality talks about salvation or redemption from sin which finds no mention in Hindu theology (say, the Upanishads). Continue reading “Exploring the concepts of spirituality IV: Roots in Hinduism”

Exploring the concept of spirituality III: Pauline and Christian roots

St Paul in prison by Rembrandt [Courtesy: Wikimedia Commons]
Margaret Chatterjee’s writings on the concept of spirituality suggests that Christian thinking on what constitutes spirituality emerge from St. Paul’s thoughts on the matter. If one goes by biblical records, Jesus himself spoke about the Spirit of God less than a dozen times while Paul mentions the spirit over a hundred times.

Jesus did recognize the importance of the body, evident when he healed the sick and fed the hungry. He did not present any apparent dichotomy between the spirit and the flesh but he was certainly concerned with the dichotomy between the present human state and the future of the Kingdom of God that was to come. In other words, there was a contrast between the things of the spirit and mortality. This awareness, Paul addresses, by assigning a new set of roles to the Spirit. It is the Spirit, he says, which reveals, teaches, inspires, strengthens, sanctifies, infuses love, and “sets us free” (from the travails of mortality?). Continue reading “Exploring the concept of spirituality III: Pauline and Christian roots”