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Beyond Medicine: Difficult Dialogues 2017

JasonLewis3 May 2017

Written by Ina Goel, research scholar at UCL and runs the hijra project

A public health system is a complex intersectional unit of people, institutions and resources determining the heath culture of a society. Prof. Debabar Banerjii explains health culture as  an ecological approach that allows us to analyse epidemiology, cultural perceptions, health technologies and health behaviour within a country. At the recently held Difficult Dialogues conference, I got a chance to be a part of the shifting debates on India’s health culture. My panel was on gender and health, which  looked at gendered determinants of health inequities in India. Key focuses were on issues related to gender-based violence, sexuality and access to reproductive and medical technologies.

Rudrani on Difficult Dialogues 2017 panel

As a social scientist who has spent the last seven years working with the hijra communities (trans communities known as third gender) in India, I was invited to draw on my experience of working in the field. I spoke about the gaps between the policy prescriptions and their implementation when it comes to accessing public health by the hijra communities. I got a chance to meet and interact with other experts in the field from journalism, academia and public policy that helped me strengthen my understanding in an interdisciplinary way. Difficult Dialogues gave me a platform to bring out the discrepancies between well-meaning policies and the living realities of hijra communities in India.

In April 2014, the Supreme Court of India declared that hijras be treated as the third gender. This landmark judgment gave affirmative action to hijras by adding them to the OBC (Other Backward Class) category, as a means of securing this quota. The Supreme Court further directed the Centre and State governments to urgently look into the problems faced by the hijra communities and made recommendations for providing proper medical care and separate public toilets for hijras. On one hand, the hijras are celebrated in Indian society because of their symbolism in representing several androgynous gods.  On the other hand, the hijras are often victims of sexual harassment, abuse and rape, with no laws in place capable of dealing with a hijra rape complaint. Given their socially marginalised status and the prejudices hijras face, the issue of underreporting of crimes against hijras is perhaps understandable. There is also a refusal to accommodate and acknowledge the sexual identities of hijras because there is an anti-sodomy law in practice in India. This contradiction in law means that whilst hijras can officially be recognised as the third gender, it does not allow hijras to openly come out and truly live their lives. We thus have a system that fails to recognise the felt needs of hijras.

In India, many hijras are castrated. Often, it is believed that after castration, the hijra achieves nirwana or rebirth that earns the hijra the power to bless or curse other people. However, according to the Indian Penal Code, the legality of the practice of castration is under question and there is a lack of formal guidelines issued by the Medical Council of India regarding sex-reassignment surgery. Though there are some places that offer surgery to hijras at huge costs, many hijras do not have access to those facilities or the resources to sustain them. Given this constrained situation, many hijras are forced to go to quacks and faith healers to get themselves castrated. Little academic insight exists to address the issue of violence involved in castration given the centrality of the castration operation in hijra communities and the lack of proper routes to access it. Recognising violence as a social determinant to health is critical to understanding the health needs of hijra communities in India.

Resisting violence against hijras should be the first and foremost step that the Indian government should look into. Yes, a promise for a better hijra life is essential but aiming to provide separate public toilets for hijras in a country still struggling to deal with open defecation and manual scavenging might be a little too far-fetched for immediate implementation. For better outreach and improved accessibilities, public health policy makers should recognise the relationship between the living experiences of hijras and theoretical understanding of them. The big question remains the same: How do we  ensure true equity for those who need it the most?

The theme for Difficult Dialogues 2018 is gender with the hope of finding better solutions to such difficult questions.

 

Photo: Rudrani (c) (hijra activist and founder of India’s first Transgender Modelling Agency)

References:

Banerji, D (1985): Health and Family Planning Services in India: An Epidemiological, Socio-cultural and Political Analysis and a Perspective, Lok Paksh, New Delhi

 

Difficult Dialogues 2017: A Summary

SujithaSelvarajah22 February 2017

Sujitha is a UCL global health graduate and final year medical student

UCL was knowledge partner for Difficult Dialogues 2017, which attracted a wide range of speakers Over 250 people from across the world participated in Difficult Dialogues last week, exploring issues like access to healthcare, the recent India budget speech, and the intrinsic link between sociocultural beliefs and health.

To say that this is a comprehensive summary of the conference would be a disservice to the complexity of the discussions that took place in Goa.  This blog will explore three points of discussion that I believe hold significance for health not only in India, but around the world.

  1. Whose responsibility is health?

“Be proactive and responsible for your own health.  What you can do for your own health, no one else can do.” – Manisha Koirala, Bollywood actress and breast cancer survivor

Manisha Koirala’s message of taking responsibility for your health being key to disease prevention is a familiar one, for most of us know who you avoid if you eat an apple a day. My question is what if not everyone has the same access this apple? What if it is an uneven playing field? Some have orchards in their back gardens, others have to travel for days across cities to even lay eyes on an apple and some don’t even know what an apple is, let alone its significance in keeping the doctor away.

The question I’m asking is what about the role of the state, in providing education, transport, access and facilities etc, in providing the context in which individuals can then take responsibility for their health. There needs to be a balance between the onus being on the individual and the responsibility of the state in providing an environment conducive to individuals making healthy choices.

UCL Professors Monica Lakhanpaul and Marie Lall were among speakers at Difficult Dialogues 2017As Dr Aarathi Prasad, of UCL’s Office of the Vice-Provost (Research), said: “Where people live and how they live, greatly impacts their health.” Being a UCL student, I was introduced to the social determinants of health very early on in my career in a lecture by the pioneer Professor Sir Michael Marmot.  It continues to have a lasting influence on how I question and understand health.  Why don’t we look at the causes of the causes? Why is it that some people smoke more than others? How can there be a 20-year difference in life expectancy between two neighbouring towns? Looking at it from this perspective, it is not easy in the sense that there are no quick solutions. It requires multi-sectoral input. Unfortunately there is no single vaccine, no magic bullet that will provide universal health coverage. The complexity of this was touched upon by Professor Venkatapuram of King’s College London, in the opening panel discussion with the poignant question: “ How do we make for example, the minister of transport, care about health?”

  1. How do we make health a priority for policy makers?

There was a lot of discussion about the recent India budget speech, with many calls for the Indian government to increase its public spending on health and the key role of civil society and citizens in making health a priority for policy makers. This was something that came up numerous times over the three days. The role of the media in bridging this gap between policy makers and the rest of society is central to this discussion. Abantika Ghosh, journalist and writer for the Indian Express put forward her views on the relationship between health and journalism in India: “There is a huge readership for stories about scientific breakthroughs. Something that may not make it to the hospitals in the next ten years generates a lot of excitement because it is something exotic. It is like reading science fiction. On the other hand public health, which is so much more important, so much emergent a need, gets much more neglected in the media space.”

This difficulty expressed by Ghosh is unlikely to be experienced by India alone, but also shared across the world. As Dame Anne Johnson (UCL’s Vice-Dean International for Population Health Sciences) said: “The problems India facing are global problems – we all have them.”

The media has the potential to play a huge role in raising awareness of health issues among the public and also in holding the government accountable. The work of Sohini Chattopadhyay, an independent journalist, is a clear example of this. Chattopadhyay carried out an undercover investigation unearthing shocking findings about the quality of care and experiences of women during childbirth in a particular labour room in Calcutta. Whilst not quite meeting the Millennium Development Goal for reduction in Maternal Mortality, India has seen a significant decrease. As Chattopadhyay stated: “That kind of improvement is incredible, but ten years down the line, we have to talk about a little more than ‘Is the woman alive after childbirth?’ We have to start talking about qualitative experiences.”

  1. Is grassroots organisation a substitute for policy?

This was in fact a question asked by David Osrin, UCL Professor of Global Health, during the arts and health workshop. The primary aim of the summit was to collate at least one policy recommendation from each panel discussion and before presenting them to the Prime Minister, Narendra Modi. For me, the numerous examples of existing projects making a tangible impact on communities was at the forefront of what makes Difficult Dialogues a force for change.

UCL partners with a range of organisations in IndiaDelan Devakumar’s work crafting short films on topics like child marriage and organising screenings to raise awareness and catalyse discussion is just one of many examples.  Professor Osrin’s work in the Dharavi Slums with the Alley Galli Biennale is a beautiful demonstration of how art can intersect with community and health.  The two-year process led to an exhibition, blending art and science to share information on urban health and showcase the contribution of the Dharavi people to Mumbai’s economic and cultural life. With four themes – art, health, recycling and vitality – the Biennale invited Dharavi residents to meet, educate themselves on urban health, learn new skills, and produce locally resonant artworks that were authentic, honest and relevant.

Recently UCL partnered with Symbiosis International University to evaluate existing health, education and sanitation interventions within the Pune district. Devaki Gokhale, Assistant Professor at Symbiosis University said: “This partnership with UCL is an exhilarating experience, the sharing of ideas, thought provoking discussions, listening to the needs and concerns expressed by villagers from a different lens and, through a holistic approach, feels prolific.”

Community interventions and policy are not mutually exclusive, and nor should they be. However, there are distinct gaps where policy is far from having a real impact on people’s lives. This is the ideal space for projects like these to flourish and make a difference.

Difficult Dialogues tackled a range of health issuesAt the heart of all these grassroots projects are partnerships. Whether between institutions, or even on an individual basis. It is clear that we have a lot to learn from each other. Sneh Bhargava, India’s first female radiologist and recent director of the All India Medical Institute of Medical Sciences (AIMS), was a figure Ina Goel (UCL PhD student) learnt about and looked up to in school. When they met, Ina was in awe of her work as a trailblazer in the field of medicine and Sneh was fascinated by Ina’s essay on universal health care.

When health is something so clearly impacted by politics, economics, and sociocultural factors, maybe the bringing together of different perspectives and background to achieve common goals, should be an approach taken not only in the community and among universities, but also at state level. Perhaps the key is to figure out how to make the transport minister care about health after all?

What is Difficult Dialogues?

SujithaSelvarajah7 February 2017

Difficult Dialogues Logo 2017In just three days, the annual Difficult Dialogues forum will kick off. This year’s collaboration between UCL and Difficult Dialogues centres around the pivotal question, ‘Is India’s health a grand challenge?’

Difficult Dialogues is a platform for change.  It is a unique opportunity to bring together a varied range of stakeholders, from experts in academia, public policy, business, international relations and civil society.  These diverse perspectives will undoubtedly fuel important debates about health in India. Our conversations will focus on the four central themes of the summit: Inequality, Gender, Universal Health Care and The Changing Burden of Disease.  Founded by UCL alumna, Surina Narula, Difficult Dialogue’s vision is to build a foundation for these difficult conversations, and translate this dialogue into impact.

The variety comes not only in the panellists and speakers but also the audience.  Rarely will you find such a range of audience members — from government officials and civil society organisations to undergraduates — being engaged in the same discussions.  The forum will take a broader look at health, examining the impact of social, political and economic factors on communities and individual wellbeing.

UCL pioneered investigation into the social determinants of health, with Sir Michael Marmot’s landmark Whitehall Study leading the way in making us rethink the way we tackle health inequalities and universal health care.  Professor Marmot, Ruth Bell and their colleagues at the UCL Institute of Health Equity continue to build this evidence base.   UCL has a strong history in being a leader for change; for example it was the first university in the UK to accept men and women on equal merit. As Dame Nicole Brewer of the Vice-Provost’s office said, “UCL’s strength in forming global partnerships lies in its expertise across a wide range of disciplines.”  Dame Anne Johnson, a UCL speaker at the summit, was the principal investigator in the first ever study that looked at sexual health behaviours, the first of its kind across the world.

Former Director of the UCL Institute of Global Health and current director of Maternal and Child Health at the World Health Organisation, Anthony Costello, did substantial research looking into interventions which reduced maternal mortality rates in rural Indian communities and one of the panel discussions will look at Better Births and choices in Childbirth.  The panel features award-winning independent Indian reporter Sohini Chattopadhay, Bashi Hazard, an Australian lawyer who is Board Director of Human Rights in Childbirth, and will be chaired by UCL’s Dr Aarathi Prasad, who is part of the steering committee for the entire summit.  The panel looking at ensuring equality and opportunity for individuals with disabilities, will be chaired by the UCL Academic lead for Difficult Dialogues, Professor Monica Lakhanpaul.  Professor Lakhanpaul has recently won funding from the Global Challenges Research Fund (GCRF) for a project which looks at optimal infant feeding practises in rural India. The project is one of the first to be funded by GCRF which recognises world-leading research partnerships improving health in low and middle income countries.

At the heart of this bidirectional partnership between Difficult Dialogues and UCL is knowledge exchange and opportunities for collaborations that work towards the overall goal of universal health coverage.