Merry Christmas Or Seasons' Greetings?

A few days ago, one morning I read two articles which made me reflect on the two different ways in which multi-cultural and multi-religious societies can look at inter-faith dialogue, respect and harmony.

In this post, I am going to talk about these 2 different ways of looking at religious differences and what we need to do for living with a diversity of beliefs.
The Two Articles

Let me start with the 2 articles which had stimulated this reflection. The first was an article in a recent issue of Readers' Digest magazine. Actually it was not an article but a snippet under the heading "Your True Stories". I am transcribing that snippet here:

Last December, a young lady ringing up my purchases greeted me with an enthusiastic Merry Christmas!” I was not offended, but I am a Muslim, and at the time I was wearing a beautiful headscarf in a manner identifying my spiritual convictions. I responded, “Happy birthday!” At first, she was taken aback, but then she nodded and laughed good-naturedly, acknowledging my point. I smiled back at her and said, “Merry Christmas to you.”

The second was an editorial in the Indian newspaper Hindustan Times, written by Mr. Rajmohan Gandhi, the grandson of Mahatma Gandhi, under the title "In Memory of Frontier Gandhi, a Plea for Justice for Faisal Khan". It mentioned the story of Khan Abdul Gaffar from Peshawar, now in Pakistan, and his organisation called Khudai Khidmatgar, which worked for promoting Hindu and Muslim unity. Khan Abdul Gaffar was also known as Frontier Gandhi and I have memories of meeting him as a child in Delhi in early 1960s at the home of Dr. Ram Manohar Lohia, the charismatic leader of the India's Socialist Party. This article is about a person from Delhi, Mr. Faisal Khan, who has an organisation in India inspired from the ideals of Frontier Gandhi. It described Faisal with the following words:

Faisal Khan has striven without pause for two goals — communal harmony and relief for the neediest. He is also a wonderful singer of the Tulsi Ramayan. Hindus of all types, from venerated guru to college students, have been charmed by his rendering of the Ramayan’s verses. Keen, as part of his efforts towards harmony, to identify with the traditions of his Hindu friends, Khan, along with associates, recently performed the much-valued Braj Parikrama. On the last day of this 84-km yatra, they went to Mathura’s Nand Baba Mandir, where they were courteously received by the priest.
Reading these 2 articles, made me reflect about the two approaches to inter-faith harmony.

Multicultural Approach to Inter-faith Harmony

I think that first article represents the multi-cultural approach to inter-faith harmony, which arose in UK or perhaps in Western Europe. Now this approach seems to be common in the West (Europe, USA and Australia). It is slowly making inroads even in countries like India, at least among some academic and activist groups. It asks individuals to respect the diversity of religions of others, by not offending them by involving them in things related to other religions. Thus, if we are Christians, it says that we should not have overt signs celebrating Christmas or Easter in public spaces and schools. If we have to greet people we do not know, we should use generic terms like "seasons' greetings" and to not "merry Christmas", for not offending non-Christians. People who believe in this approach, talk of tolerance and respect for other religions.

If we believe in this approach to inter-religious relations for harmony, then if we are Muslims, we won't make Eid or Ramazan greetings to the non-Muslims and if we are Hindus, we would greet only other Hindus on our festivals.

Indian Approach to Inter-faith Harmony

When I grew up in India, our approach to diversity of religions was different. While in school, we had holidays for the festivals of all the religions. Since early childhood, I was used to meeting persons of different religions among neighbours, friends and in public spaces.

Over the years, we lived in different houses, where we had as neighbours families of different religions. Even at home, among the socialist friends of my father who visited us included persons of different religions. During our travels, I had stayed at the homes of family friends of different religions.

When I think of those years, it is remarkable that I can't remember ever thinking about the diversity of religions of all those encounters in India. I had been familiar with news of riots and religious riots, but somehow they had no real bearing with my relationships with persons of different religions. My first actual encounter with the underlining of and impact of diversity of religions happened in Italy, when a high school student asked me if I believed in Madonna. I had told him that I was a Hindu. He did not know any Hindu but he knew about protestants and that question was his way of reassuring himself that I did not deny the sacredness of Madonna. When I told him that I respected Madonna, he was reassured.

The basic understanding governing the multi-religious relationships in the India of my childhood was that all religions are about the one and the same God. Therefore, festivals of all the religions belonged to everyone. Having school holidays for all those festivals reinforced that feeling. So it meant, waking up at early morning to go out and stand on the side of the street to wait for Prabhat Pheri of the Sikh when they celebrated their Gurupurab. It meant wishing everyone Eid Mubarak and eating the sweet sewaiyan, that our neighbour Irene brought to our home. It meant going with my Catholic friend to the midnight mass in the Cathedral on the Christmas eve. It meant going into Buddhist temple to pray to Buddha. And, it meant, saying Happy Diwali to everyone and offering them sweets to celebrate the Hindu festivals.

In that India of my childhood, the idea of "tolerance" in reference to other religions, would have been kind of insulting, because we were expected to share the joy and sacredness of each religion and not just "tolerate" them

Which Approach Do You Prefer?

I think that with some exceptions, increasingly the modern world is going towards less orthodox religious beliefs. A large number of my friends and members of my extended family in India, do pray in temples and homes, but they are equally respectful of other religions. There are four inter-religious couples among my cousins' families. My own family is also inter-religious. With time, I expect that religious diversity in our family is only going to increase. This means that we shall have more occasions for celebrating festivals and also picking and choosing some aspects of ideas and practices of other religions in our daily lives. This seems to be in line with the ideas of inter-religious harmony with which I had grown up in India.

It is true however, that even in India, I feel that compared to my childhood, today many groups of persons are more polarised in terms of religions. Though a lot of persons continue to value respecting and sharing among persons of different religions, those with polarised thinking speak louder and dominate many forums. Fortunately, India continues to have a lot of mixed religious spaces formed by inter-mixing of persons of different religions.

I think that the ideas of multi-culturalism approach to inter-religious relations in Europe and America, which are focused on "not offending those of other religions", are a result of increased encounters after the second world war and due to a globalised world, between the more secularised and less religious populations in the West with more conservative minorities, often immigrants, who feel that they need to hold on to their specific identities, for not getting lost in their new lands. Thus, I feel that it is an expression of cultural anxiety.

In many ways, these inter-cultural encounters are also shaped by identity politics and ways of reading all relationships in terms of dominance and oppression. Perhaps historians can tell us from the experiences of the past, how such encounters between people of different cultures can evolve and resolve?

Which of these two approaches to inter-religious harmony do you prefer?

Conclusions

From the way I talk about the Indian way of looking at the diversity of religions, it must be obvious that I prefer this approach to inter-faith harmony. At the same time, after my travels across different countries and encounters with a diversity of religions and cultures, I must acknowledge that many persons feel threatened or at least uncomfortable if they have to accept close contact with other religions. I try to respect their diffidence, though I must confess that I can't really understand their anxieties.

I also try that I continue to deal with persons of different religions in my way. I go rarely to the mass in a church, but when I do, I am happy to bow my head and pray. I am not very religious, and while visiting temples, churches, gurudwaras and sufi dargahs, I try to feel the sacredness of their ambience and prayers. I also wish Eid Mubarak or Merry Christmas or Happy Deewali or Happy Navroz, to all my friends at the festival times without worrying if they are Hindu, Muslim, Jew, Christian or Sikh. However, if I know that a person does not appreciate receiving greetings for festivals of other religions, I try to be respectful of their choice.

I know that we live in polarised times. For whatever reasons, some people have become more aware of religious differences and at least some of them, do not wish to celebrate the festivals of others or to visit the others' prayer places. At the same time, I often find many persons who think about different religions like me, they are happy to listen to religious ideas of others and do not get offended by religious differences.

Personally, while each one of us is secure in his or her own religion, I would prefer a world of acceptance, respect and joy towards all religions. I know that it is an utopia, but I like utopias.

A final note about Mr. Faisal Khan mentioned above: I have read that Mr. Khan was arrested on 2nd November 2020 for offering namaz in the courtyard of a Hindu temple in India, though it was the temple priest who had suggested to Mr. Khan to pray there. I think that a Muslim singing Ramcharit Manas and praying in a Hindu temple can happen only in India because of this approach to inter-religious harmony that I am talking about. It is an embodiment of the Indic thinking which sees different religions as paths to the same God.

I hope and pray that better sense will prevail and Mr. Faisal Khan can be released.

***

Cooking For The Dictators

When I read the premise of the Polish journalist Witold Szablowski's book "How to feed a dictator", I was immediately hooked. In this book he has interviewed the personal cooks of some of the more infamous dictators of 20th century, most of whom were also known mass-murderers.

I think that to have the deaths of hundreds of persons on your conscience and to live with that burden, you have to be some kind of psychopath. The history shows that often these persons also had charismatic personalities, as epitomized by Hitler and Stalin. These persons have their die-hard fans, who continue to be their followers even after listening to the stories of tortures and violence committed by their idols. Both, fascism and communism attract believers, similar to the attraction of radical religious ideas for certain persons. Believers and followers are necessary to make these persons what they finally become.

I was curious to know, how did their cooks, who have an opportunity to observe their bosses in their private and personal moments, saw those monsters? I finished the 200 pages-long book in 2 days. The insight it gave me is the extreme banality of becoming dictators - ideology can blind people and make them do all kind of things which facilitates dictatorship!

Some Personal Background

Let me start with a confession - lately I seem to have become very weak-hearted. I can't watch any scenes of gory violence or the horror films. I also can't read any books about violence. Earlier, I was not so weak-hearted, but over the past few years, I just can't bear the feelings of dread such films/books can create.

Thus, reading Szablowski's book was an unusual decision for me. I started reading it with the idea that if it had any graphic scenes of violence or torture, I would stop reading it. However, it does not go into the details of the deeds of those dictators. Most of the time, Szablowski only skims the surface, giving superficial accounts of the killings and the tortures.

During my travels around the world, I have been to many countries with communist regimes and some countries with dictators. Once, I even risked being taken prisoner by a group of communist guerrilla fighters. Listening to the stories of persons who had lived in these places, has cured me forever of the romantic ideas about revolutions and the charm of all kinds of ideologies such as communism and fascism.

I believe that violent struggle/revolution to fight against injustice and oppression is not a solution - it substitutes one kind of oppression and injustice with another kind, which is usually equally ferocious and implacable, and sometimes worse than what it replaces. Szablowsky's book has many stories about it.

Sometimes, I used to have long and animated debates with friends who believe in communism - I have learned to not argue with them. They are blinded by their beliefs and there is nothing I can say which can convince them otherwise. For example, I am sure that they can read Szablowski's book and find justifications for everything.

Dictators in Szablowski's Book

In his book Szablowski presents the stories of the cooks of 5 dictators - Saddam Hussein (Iraq), Idi Amin (Uganda), Enver Hoxha (Albania), Fidel Castro (Cuba) and Pol Pot (Cambodia).

I already knew many things about all of them except for Enver Hoxha, the communist dictator of Albania. To read about him was a revelation. All the 5 protagonists of this book were paranoid personalities or perhaps, it would be better to say that once you become a ruthless dictator and are forced to kill people or to get them killed, you have no option but to become paranoid.

All the cooks of this book are men, except for the cook of Pol Pot. All of them, were associated with their bosses from their early carriers, before they had become the famous dictators. All were forced to become cooks because their bosses were suspicious of others and wanted someone they knew for this role. All of them walked on a tightrope, aware that their boss may suddenly feel that they are not faithful and decide to get them killed. Any dish cooked with too little or too much salt could have been seen as an attempt to poison.

The cooks' stories bring out the insecure men hiding behind the persona of ferocious dictator for whom they were working. Their stories bring out the specific personal traits of each of them, like Fidel Castro, who thought that he knew everything and gave long and boring lectures to everyone about how to do something, including to his cook. These parts of their stories give a comic touch to the book, even while in the background, the purges continue and the people surrounding the dictators fall out of favour and disappear.

The most fearsome person in the book is Pol Pot, also known as Brother Pouk or Brother Mattress or Angkar. He is fearsome because he is very handsome (according to his cook who sounds in love with him), always gentle and smiling. He is surprising because he is kind to his obviously mentally ill wife. He is fearsome because he believes completely in the teachings of Marx and Mao, and is willing to go to any length to realise his communist paradise - including killings of professors, doctors, writers and all the persons who have an education, and relocation of millions of city inhabitants to countryside so that they may learn the virtues of manual work and hunger. He is also most fearsome because he evokes obedience even from persons he has ordered to be killed. Even his cook who knows that she can never betray him, says that she would have been happy to be killed because "If Angkar has taken a decision, then he must be right".

I have never been to Cambodia, but I had heard many similar stories during my journeys in China and Vietnam in late 1980s and early 1990s.

Away from the cameras and the journalists, in their private lives, these mighty dictators were just little guys, missing the cooking of their mothers and their home towns, getting drunk, sometimes petty and sometimes generous, finding a refuge in their ideologies.

Conclusions

Sbzablowski's book does not make any new revelations but it gives a different point of view of seeing the infamous dictators of 20th century - persons who had made history and influenced their worlds. I felt sympathy for those cooks, who now try to hide behind ordinary lives, so that no one comes to look for them and to hold them responsible for those events, which took place when they were close to the powerful.

Some of them, who had met kings, queens and prime-ministers and had cooked for them, travelled around the world in private jets and Mercedes cars, are now living lives of poverty, usually ignored by most regarding their illustrious past.

I think that it is good book to read if you are interested in history and in humanity - it shows you how chance and destiny can shape a life and how power corrupts. It also shows that nothing lasts for ever and sooner or later, one day even the most powerful dictator would have to concede defeat.

*****

#bookreview #books #bibliophile #historybook #dictators

Poverty, Disease & Disability

The links between poverty, diseases and disabilities are well known. These links can work in complex ways. This post is about studies in Brazil showing how Zika virus infection in pregnant women combined with a neurotoxin in contaminated water in drought affected areas to increase the incidence of microcephaly (smalll, less developed brain cortex) in their newborn babies, leading to cognitive disabilities.

Understanding how different factors combine together to produce an effect is important since it helps us to look for specific solutions even while we work to remove systemic disparities linked with poverty.

Zika Infection in Brazil

Though Zika virus had already been identified in 2013, it suddenly burst out as an epidemic in Brazil in 2014. Over the following 2 years, the disease quickly spread to many other countries of the Americas and pacific. The disease is transmitted mainly through a mosquito (Aedes aegypti), and also by sexual contacts and blood transfusions. That same mosquito is also responsible for spread of other diseases like Dengue, Chikangunya and Yellow Fever. Initially it was thought that Zika infection did not cause any serious complications, till October 2015 when first reports of children born with microcephaly started coming among the pregnant women who had had Zika infection. Within a month, the number of children born with microcephaly had increased ten times. Many other newborn children had other neurological problems. Other complications of Zika included congenital malformations, and paralysis due to Guillain-Barre syndrome.

By early 2017, the number of new cases of Zika had started decreasing all over, even if different countries keep reporting occasional cases. For example, in 2018, Rajasthan in India had reported a Zika outbreak. Different aspects related to this infection remain unclear including the reasons which had led to its sudden and explosive growth in 2014-15.

Drought and Water Contamination in Brazil

The Zika epidemic had coincided with a period of drought in the north-east of Brazil. With lack of rains and evaporation of water, the concentration of salinity and minerals in the water-bodies had increased, creating favourable conditions for the growth of Cyanobacteria. These bacteria produce a chemical called Saxitoxin, which damages the nerve cells. Shell fish from the water-bodies in the drought areas had higher concentrations of Saxitoxin.

Zika and Saxitoxin

An article in June 2020 issue of The Scientist explains how Zika infection had combined with Saxitoxin to increase the number of newborn children having microcephaly. It says, "While the incidence of Zika was higher in other regions of Brazil, the number of children being born with microcephaly was higher in the north-east." Fortesting, researchers infected neural cell-cultures with Zika and then exposed them to low concentrations of Saxitoxin. They found that brain cells exposed to both Zika and Saxitoxin had 2.5 times more dead cells and three times higher number of Zika virus. This meant that Saxitoxin increased virus replication and worsened its impact on the brain cells. These findings were also confirmed in animal studies.

This research also underlined the links between poverty and disability. Poor persons with Zika infection were more exposed to drinking of contaminated water and thus were disproportionately hit by higher numbers of children with microcephaly and other congenital neurological defects leading to cognitive and intellectual disabilities.

Conclusions

This case-study shows that natural conditions such as droughts can change the risks of contamination. In such situations, policies such as privatisation of water resources lead to negative consequences which disproportionately affect the poor families. For example, drinking water from deep tubewells, has created similar risks by arsenic contamination of the ground water in Bangladesh and some parts of India, which also disproportionately affects the poor.

Case studies like this are important to understand the different ways in which diseases and other negative environmental conditions can combine and cause diseases and disabilities, especially among the poor.

*****

Fighting Superbugs

65 years ago when I was born, dying due to a simple infection such as diarrhoea or pneumonia was common. Our family history had numerous stories of persons dying young. At that time, average life expectancy in India was less than 38 years. While I was growing up, during 1960s and 70s, slowly we had become familiar with names of antibiotics like Tetracycline and Chloramphenicol. By the time I finished my medical college in late 1970s, average life expectancy had increased to 53 years, while the list of available antibiotics had become much longer with drugs like ampicillin, amoxicillin, erythromycin and gentamycin. Every year, new medicines were coming out. Occasionally we had infections which were resistant to some of these medicines, so we had started doing cultures to check which antibiotics could be more effective in a patient who was not responding to treatment.

In the last 50 years, the situation has changed drastically. Every now and then we hear of infections which do not respond to any medicine. Matt McCarthy's 2019 book "Superbugs: The Race to Stop an Epidemic" is about this subject.

Use of Antibiotics in Livestock

The first use of antibiotics in the livestock was approved by the Federal Drug Agency (FDA) of USA in 1951. They started to be used in small amounts in concentrated animal-feeds for growth promotion and prevention of diseases among the farm animals, especially in the poultry and cattle destined for meat production. They helped chickens, pigs and livestock to grow faster and put on weight. Since then, the use of antibiotics in the industrial production of meat has become routine.

Eating this meat introduces those antibiotics in our bodies and in the environment, promoting drug resistance in the bacteria. Already in 1969, a British committee of experts had concluded that the use of antibiotics in animals was contributing to antibiotic resistance in humans. Thus we are aware of this problem for a long time. However, its importance was under-estimated.

Apart from the use of antibiotics in the livestock, another problem has been indiscriminate use of antibiotics. Many doctors prescribe antibiotics for viral infections, even when they know that these are not useful. There is no control on the sale of antibiotics in many countries, so that people can buy them without prescription.

Antibiotic resistance and resistant bacteria both travel around the world, passing from one country to another. Thus, it is global problem affecting everyone and no one is safe from it.

Over the past decade, numerous cases of infections non responding to any medicine and leading to death of persons have brought this subject to the attention of general public. Extremely resistant cases of diseases like tuberculosis have appeared and are widely feared. The World Health Organisation has already issued some catastrophic warnings and asked for urgent search for solutions.

Matt McCarthy's Book

McCarthy's book on the subject of superbugs is written in an extremely engaging style. He works at the Presbyterian Hospital in New York, where they try to identify new antibiotics which can treat resistant infections. He explains the difficulties of treating superbugs through stories of individuals who turn up in the emergency department of his hospital. Reading the theories of antibiotic resistance is very different from reading about someone who has this infection.

For example, the story of a person, whose diagnosis of cancer has devastated his family. When it seems that chemotherapy might save him, a minor infection suddenly takes him close to death, unless the doctors can find some new treatment to treat it, but it is not responding to any medicine. McCarthy's book has a series of these real-life inspired stories, which start as a character sketch of the persons and their families and then reach a sudden turn of random events which turn their lives upside down, showing the fragility of our lives.

Once I started this book, I didn't stop reading it till 4 days later when I finished it. While I have known about superbugs and the problems of antibiotic resistance for a long time, the book explained the different challenges associated with it. Mixing of scientific information with human stories makes it very interesting. The book mainly moves around the human trials of a new antibiotic called "Dalbavancin" or Dalba. It also mentions some other new medicines and the persons involved in their research but most of its stories are of persons on whom Dalba is being tried.

Over the decades, doctors engaged in research for new medicines have not always behaved in an ethical manner. Recently, I was reading about an unethical research done by Armeur Hansen, who is known as the person who had discovered the leprosy bacillus in 1873. McCarthy shares the details of inhuman and unethical research done in the Nazi camps. Then he tells about another research carried out in Tuskegee, Alabama (USA), where hundreds of black men and women were recruited in a research, given false information and denied treatment which could have easily cured them, so that the doctors could study the natural evolution of the sexually transmitted infection syphilis. This had happened in 1950s-60s, years after the Nazi experiments.

The book also touches on the world of Big Pharma. For many years, I was part of a group fighting for people's right to health. In these groups, multinationals and especially the Big Pharma, is seen as villain, as they look only at their profit margins and are uncaring of the poor persons' need of medicines. McCarthy's book avoids painting the drug companies in black and white.

For example, McCarthy's explanation about insufficient research on new antibiotics and the role of the big Pharma is in the following terms:

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, is the man responsible for establishing federal funding priorities for research on antibiotic resistance, and he told me that developing new drugs is, in fact, one of his top priorities. But the situation is complicated. “You don’t want the federal government to be a pharmaceutical company,” he said, “because you’d have to build an entire industry, and that would divert away from what the government does well, which is scientific discovery and concept validation. We need a partner.”And that partner, for better or worse, is Big Pharma. “If the federal government tried to re-create Merck,” Fauci said, “it would cost billions of dollars. The expertise of production, filling, packaging, and lot consistency. People take that for granted, but that’s an art form that has been perfected by these companies, not the government.”The problem, ultimately, is that many antibiotics are not very profitable. When a new drug emerges from an idea, there’s a step-by-step process that costs upward of a billion dollars to bring it to market. If that leads to Viagra, the expense is justified because you’ve just made a multibillion-dollar drug. With an antibiotic, however, the profit margins are narrow because of three characteristics: they’re usually given in short courses, they’re prescribed only when someone is sick, and sooner or later even that terrific new antibiotic is going to develop drug resistance. The latter is not a matter of if but when. “The incentive to make major investments in antibiotics,” Fauci told me, “is not something that attracts the pharmaceutical industry, so how do you get around that?”

The book is also an ode to McCarthy's senior colleague and mentor, Tom Walsh , director of the Transplantation-Oncology Infectious Diseases Program, who seems to live only for his work and does it with great empathy. It is difficult not to share McCarthy's admiration of such a wonderful human being and professional, and wish that if one day we would find ourselves in a hospital, we shall have a doctor like him.

Apart from his skills as a clinician and researcher, McCarthy also has a way with the words. For example, he introduces Tom Walsh with the following words:Walsh is a wisp of a man, pale and thin like a potato chip, with deep-set eyes, a warm smile, and a surprisingly firm handshake. His modest features are a notable contrast with my own: I have a high forehead, broad shoulders, and a nose that’s slightly too large for my face. We make for an odd pair.

Conclusions

I love reading books about health and medicine. These give an overview of the issues in a way which is impossible in the medicine textbooks, which limit themselves to dry facts - symptoms, diagnosis and treatments. On the other hand, a good book on medicine aimed at general public, provides a glimpse into its history and how our understanding about the disease condition changed over a period of years or decades.

For example, I have been really impressed by a couple of books on psychiatry and autism, which I had read recently - they had opened the doors to a largely unknown world to me. "Superbugs" by Matt McCarthy didn't have the same impact, because I was already familiar with some the ideas and questions it discusses. However, I loved reading it and will recommend it to everyone for gaining a deeper understanding about an important subject, in an engaging way.

Note: In 2019, after writing this post I had contacts with Dr Abdul Gafoor who told me about the WHO initiative on antibiotics resistence and that spread of resistant strains through lack of sanitation was a much bigger contributing factor compared to the irrational use of antibiotics. He referred me to his article in The Hindu, from which the following excerpts are presented below:

"... back in 2010, people like me sincerely believed that AMR was caused primarily by the misuse of antibiotics by the medical community. We all wrote a few lines about infection control, but 90% of our articles, research papers was about irrational antibiotics usage. I did not write about environmental sanitation. I did not write about most of the things that I know today, because that the concept has changed over the last 10 years. At that time, we thought that antibiotic stewardship was the most important component in tackling AMR, along with infection control, and then made a mention of the importance of sanitation. Now if you ask me, what is the most important component of tackling AMR, I will say in a developing country such as India – it is sanitation. I will put sanitation right on top, then I will put in infection control, and then, antimicrobial stewardship, rational antibiotics usage - whether at the hospital or over the counter.

Why? Thanks to scientific evidence that has emerged, since, and changed our perspective. A commentary published in Antibiotics, an open access journal, recently showed that AMR rates were found ‘positively correlated with higher temperature climates, poorer administrative governance, and the ratio of private to public health expenditure.’ When a more complex analysis was done, then better infrastructure (e.g., improved sanitation and potable water) as well as better administrative governance (e.g., less corruption) were strongly and statistically significantly associated with lower AMR indices. And this is significant: the comment stated that ‘Surprising, and contrary to most current beliefs, antibiotic consumption was not strongly associated with AMR levels. This empirical evidence implies that contagion, rather than antibiotic usage volumes, is the major factor contributing to the variations in antibiotic resistant levels across countries.’"

*****

#bookreview #antibioticresistance #mattmccarthy

From Disability Action Plan to Rehab 2030

In July 2019, the "Global Disability Action Plan (GDAP) 2014-2021" of the World Health Organisation (WHO) was replaced by the "Rehab 2030" plan. This post is about the key differences between GDAP and Rehab 2030 and also about my opinions regarding the new plan.

WHO is the health body of the United Nations (UN) and advises national governments on their health policies and programmes. Thus, Rehab 2030 is important because it will influence rehabilitation programmes and services in countries over the next decade.

Global Disability Action Plan (GDAP) 2014-21

The overall goal of the GDAP 2014-21 was "Better health for all persons with disabilities" and it had three objectives:

(1) To remove barriers and improve access to health services and programmes

(2) To strengthen and extend rehabilitation, habilitation, assistive technology, assistance and support services and community-based rehabilitation (CBR)

(3) To strengthen collection of relevant and internationally comparable data on disability and support research on disability and related services

The GDAP 2014-21 was supposed to reach these 3 objectives through human rights based approach, empowerment of persons with disabilities, life-course approach, culturally appropriate person-centred approach, multi-sectoral Community-Based Rehabilitation (CBR) and universal design.

Rehab 2030 Plan

The new plan has a wider view of the rehabilitation services by focusing on functionings which can be limited due to health conditions, environment and by the interaction between these two. It proposes to develop Packages of Rehabilitation Interventions (PRIs) for the following groups of functionings within the next 10 years:

(1) Musculo-skeletal:Low-back pain, neck-pain, fractures
Other injuries
Osteoarthritis, amputation, rheumatoid arthritis

(2) Neurological:Cerebral palsy, brain injury, Alzheimer-dementia, spinal cord injury, Parkinson's disease
Multiple sclerosis, motor neurone disease, Guillain-Barré

(3) Cardio-Vascular Diseases including myocardial infarction and heart failure

(4) Chronic respiratory diseases

(5) Neoplasms

(6) Mental disorders:Schizophrenia
Developmental and intellectual disabilities
Autism spectrum disorders

(7) Sensory Impairments:Hearing loss
Vision loss

Rehab 2030 aims to make these PRIs to be available as part of the Universal Health Coverage at different levels of the health services, as shown in the graphic below.

The lowest level of intervention is that occurring at home and in the community - informal and self-directed rehabilitation. Moving up from below, the other levels of rehabilitation interventions are primary health care, secondary & tertiary health care, community-delivered rehabilitation and specialized high intensity rehabilitation.

Changes from GDAP to Rehab 2030

From Impairments to health conditions: In many ways, the vision of Rehab 2030 is very different from that of GDAP. Till GDAP, the focus was on the effect of impairments. The focus of Rehab 2030 is on the impact of health conditions. This subtle shift, focusing on "health conditions" instead of "impairments caused by the health conditions" opens rehabilitation programmes to the needs of other groups of persons, such as elderly persons, and persons with cardiac and respiratory conditions.

Rehabilitation Interventions: The other significant change from the past is the focus on "rehabilitation interventions". During the late 1980s and early 1990s, the Disability & Rehabilitation team at WHO had decided to focus on the delivery of rehabilitation services at community and primary health care level, leaving aside the issues related to rehabilitation interventions at intermediate and higher levels. However, over the past 20 years, new technologies have introduced a better understanding of health conditions and raised opportunities for their treatment which were not available in the past. WHO needs to provide guidance about these interventions. For example, today some children born with deafness can have cochlear implants and grow up hearing. This change goes in that direction.

Outreach Services: Another significant change is the acknowledgement of a level of rehabilitation services, which was not mentioned in any WHO document over the past many years, the "community-delivered rehabilitation". During our visits to rehabilitation services in different countries, we often came across the rehabilitation staff visiting some peripheral or rural areas to provide rehabilitation in the communities. This was called "outreach rehabilitation services". I remember a few discussions in WHO about the undesirability of these outreach services - they were costly, and often did not have adequate staff. I think that by acknowledging the Outreach services, it accepts an existing reality instead of closing our eyes to it due to ideological beliefs.

Downplaying CBR: The 4th significant change is that it downplays "community-based rehabilitation" (CBR). Instead of CBR, it calls it "informal and self-driven rehabilitation".

CBR did start as informal and self/family driven rehabilitation interventions in 1980s. However, in 1990s, other interventions related to education, livelihood, etc. were added to the CBR mix, which were not rehabilitation interventions. More recently, many organisations involved in CBR programmes have opted for the term "Community-based Inclusive Development" (CBID), which means that perhaps we can go back to using the term CBR only for the rehabilitation intervention activities at community level. Anyway, the new rehab plan rightly limits itself to the health services component of rehabilitation instead of mixing it with CBID and non-health sector interventions. 

Needs for defining community rehab interventions: I also hope that through the PRIs, Rehab 2030 will also look at defining of rehabilitation interventions for "informal and self-driven rehabilitation". During 1990s, WHO had played a crucial role in development of simple manuals on basic rehabilitation interventions, for example, for children with cerebral palsy and persons with spinal cord injury. Today, many countries have CBR as part of their national rehabilitation strategies. It will be useful for them to have updated information on evidence-based basic rehabilitation interventions for use at self-care and community level (though in part, internet is bringing better information, skills and technological support to the communities and families, who can also share their personal experiences with other communities).

Social Model and Rehab 2030

Rehab 2030 hardly ever uses the word "persons with disabilities", because it focuses on "functioning related to health conditions" instead of "impairments". However, persons with disabilities will be one of the biggest group of the users of the rehabilitation interventions and it will be difficult for WHO to not engage with them. The UN Convention on the Rights of Persons with Disabilities (CRPD) and the focus of Sustainable Development Goals on persons with disabilities, make it obligatory for WHO to engage with the DPOs/OPDs. For example, the UN Flagship report on disability which came out earlier this year (2019), also links with rehabilitation and assistive technology services.

During 1980s-90s, the Disabled Peoples' Organisations (DPOs or Organisations of Persons with Disabilities OPDs) came up with the "social model of disability", which was seen in contra-position to the "medical model of disability", implying that medical rehabilitation services were somehow bad or not useful. I personally believe that the two models are complementary - medical model focuses on individuals with impairments and social model, helps us to fight against the barriers created by the society. Both are needed. Rehabilitation interventions in the health services can not be organised through the social model - they are medical interventions and are carried out in line with the way medical/health services are organised.

Persons with stable impairments such as persons who are blind or deaf or those who had a disability in the childhood and are now grown-up, such as persons with cerebral palsy, often complain about "labelling" of their identities with their clinical diagnosis, which creates specific expectations and prejudices among people. However, rehabilitation services cannot provide treatment without a diagnosis. Such issues will continue to be a cause of friction between persons battling for superiority of social model over the medical model of disability. However, persons with disabling progressive health conditions understand the complementarity of the two models of disability in their lives much better.

Final Comments

The famous Alma Ata conference on primary health care (PHC) held in 1977 had proposed "preventive, promotive, curative and rehabilitative care" at the community level. However, in practice, citing lack of resources, PHC was limited to certain key interventions, which had excluded rehabilitation services.

During the 1990s, repeated attempts to promote inclusion of rehabilitation services in PHC had yielded little or no results. Only during the past 10-15 years, some countries have adopted the CBR approach and a few of them have linked it with their PHC services.

Today, in most countries we have persons with disabilities and DPOs/OPDs who are strong advocates for their rights while countries have signed and ratified CRPD. New national disability policies and programmes related to SDGs may also be offering opportunities for promoting rehab services in countries, which were not there in the past.

The increase in ageing populations and chronic life-style conditions, have made it imperative for people to play a greater role in their self-care, while using hospitals and specialized services for acute care and complications. New technologies including internet and mobile phones are playing a role in people's access to information. Rehab 2030 will need to facilitate this transition.

By focusing on funtionings, hopefully the new rehabilitation plan will help us to think of rehabilitation needs in a holistic way.

*****

#rehab2030 #rehabilitationneeds #who_rehab #cbr #personswithdisabilities

Accessible Children's Park in Schio

I had heard about the construction of an accessible children's park in our city Schio. I like going around on my bicycle and I had tried looking for that park a few times, but had not managed to locate it. Finally, yesterday during an evening walk with my wife, we found it.

This post is about this new park of Schio (VI, Italy), which is accessible to both adults and children with disabilities. It is a park for all, no one is excluded.

Right to Play

Article 31 of the U.N. Convention on the Rights of the Child (1989), states that all children have a right to leisure, play, and participation in cultural and artistic activities. Irrespective of country, culture, religion, and social status, all children have always played from prehistoric times. You just need to look at baby animals to understand the importance of play in their growth and well-being. Yet, few persons think about children with disabilities and their right to play. Accessible playing grounds and parks are needed so that they can be children like all the others.

Lack of play opportunities and social interaction with other children hampers the proper development of children with disabilities.

Even adults with disabilities need accessible playgrounds for their children, so that they can accompany their children and play with them like all other parents.

An Accessible Park and Playground

An accessible park and playground does not have stairs or narrow gates at the entrance. If it has stairs, it also has a ramp for the wheel chairs. Inside the park, there are suitable paths for wheel-chairs and crutches and persons with mobility problems. For the blind and low vision persons, the paths are well-marked and easy to see. At the path crossings, to help the blind persons, there are suitable surface marking which they can feel with their walking canes. Where necessary, even inside the park the stairs may be accompanied with ramps. They should have clear sign boards with both icons and texts to explain each play-structure. For blind persons recorded audio messages can also provide information.

Accessible park does not mean that every play-structure will be accessible to all the children with disabilities. There can be specific play-structures for specific groups of children with disabilities, such as the swings for children on wheel-chairs. For the use of some or most play structures, help may be needed from adults or other children, as it happens for children without disabilities. Different age groups of children may also need adult supervision.

Accessible Park in Schio

The park is located in Magre part of Schio, on Via Pio X, next to Banca Alto Vicentino. The park has been partially completed with rides and play structures, while they still need to build the Baskin court (for playing modified basketball, which can be played together by all children including those on wheel chairs or with other disabilities - it was invented in the Italian city of Cremona in 2003). It is supposed to be the biggest accessible parks in the Veneto region.

The park has a ramp for reaching the top of a slide, and each ride/play structure is marked in vivid colours. Each area is made of some soft material which acts like a cushion if you fall down. Some of the rides look strange, not usually seen in play grounds. Many of them have a futuristic look. The next time my grand daughter will come to visit me, I am planning to go back to this park and explore all these rides with her.

The park is not very well known, probably because it is not complete yet and there are no public sign boards to guide people to this place. It would be great if this park can be connected by a bicycle track or a passage to the larger park and cycle track on the other side of Alto Vicentino bank (along Via Campo Sportivo), because then more children can reach here without needing some adult to bring them here on a car.

Conclusions

I think that the idea of making an accessible park is great. City municiple government and Alto Vicentino Bank along with other partners deserve our congratulations for thinking of it.

This visit brought back a memory from Guyana (S. America) of many years ago. I had met two boys, 8-12 years old, both had a genetic muscular dystrophy, which was gradually becoming worse. The older boy was already on a wheel-chair, though he could still manage to climb stairs with difficulty. While I was talking to their grandmother, both the boys had found a slide and immediately climbed up to slide down and play (in the image below). There was no treatment for their condition and both boys were destined to get progressively worse. I remember the desperation of their grandmother and their joy in playing.

When we were visiting the accessible park of Schio, there was a man on a wheel chair with his family while a child on a wheel chair was playing on one of the rides. To see them in the park was the proof that all cities need such places, because we all have persons and children who can't enter playgrounds - they are waiting to come out of their homes and play with others.

*****

#accessibleparks #accessibleplayareas #accessiblesports #schio #italy

Disturbances of Brain & Mind: The Psychiatry Story

Jeffrey A. Liberman, a professor of psychiatry at Columbia university (USA), has written, “Shrinks – the Untold Story of Psychiatry” (Little Brown and company, 2015). Psychiatry is the branch of medicine which deals with mental illness. It is a poorly understood area, not just for common public but also for some doctors like me. I found the book fascinating and read it in almost one sitting.

In this post, I am going to write about some of the key things I have learned about mental illness and psychiatry from this book.

Mental Illness

Mental illness is unlike any other illness – it is a medical illness (something to do with our body, especially with our brain and its functioning) and it is also an existential illness (something to do with our thoughts, feelings and emotions). Each kind of mental illness is composed of a cluster of symptoms, that may be present in a variable pattern and severity in individual persons.

The 3 most common kinds of mental illnesses are – (1) Psychosis such as schizophrenia (loss of touch with reality, confused thinking, hearing voices or seeing things, having strange beliefs);(2) Depression (feelings of apathy, sadness and uselessness); and, (3) Mania or bipolar disorder (characterised by extreme mood swings).

Personal Experiences

When I studied medicine in the 1970s in India, I found that psychiatry was a little confusing. It had a lot of Freud and his theories about our repressed sexual desires and it had a few medicines for conditions like depression. I could not make any sense out of it and I was sceptical about the explanations of Freud as the causes of mental illness.

During the early 1990s, I started dealing with community-based rehabilitation (CBR) programs and came across two terms - 'mental illness' (strange behaviour) and 'mental disabilities' (such as low IQ and learning ability). In the communities, people used words like 'crazy' and 'idiots' for these two conditions. However, the affected persons found these colloquial terms negative and extremely hurtful. They taught me to use more neutral words such as persons with mental illness or learning disability.

I have also known some persons who define themselves as 'Survivors of Psychiatry', who do not like psychiatry and do not believe in its usefulness. They feel that psychiatry is a kind of conspiracy theory to control people and they say things like – "psychiatric medicines are useless, they are used only to make rich the Big Pharma; they take perfectly normal behaviours and call them illnesses to give them medicines; their drugs and treatments destroy people’s brains."

Negative Reputation of Psychiatry

Lieberman owns up immediately that for this negative reputation, psychiatrists themselves are to be blamed, “There’s good reason that so many people will do everything they can to avoid seeing a psychiatrist. I believe that the only way psychiatrists can demonstrate just how far we have hoisted ourselves from the murk is to first own up to our long history of missteps and share the uncensored story of how we overcame our dubious past ... Psychiatry’s story consists mostly of false starts, extended periods of stagnation, and two steps forward and one step back.”

From the start of the nineteenth century until the start of the twenty-first, each new wave of psychiatric sleuths unearthed new clues—and mistakenly chased shiny red herrings—ending up with radically different conclusions about the basic nature of mental illness, drawing psychiatry into a ceaseless pendulum swing between two seemingly antithetical perspectives on mental illness: the belief that mental illness lies entirely within the mind, and the belief that it lies entirely within the brain. … Psychiatry, on the other hand, has struggled harder than any other medical specialty to provide tangible evidence that the maladies under its charge even exist. As a result, psychiatry has always been susceptible to ideas that are outlandish or downright bizarre; when people are desperate, they are willing to listen to any explanation and source of hope.
The term “psychiatry”—coined by the German physician Johann Christian Reil in 1808—literally means “medical treatment of the soul.” Psychiatry’s beginning is linked to a German named Franz Anton Mesmer in the 18th century, who rejected the common ideas of divine punishments and sins as cause of these disturbances and suggested that they were caused by the blockage of an invisible energy running through magnetic channels in our bodies. He called this energy 'animal magnetism'. Though his ideas about the invisible energy were wrong, but this was the beginning of looking for causes of mental illness inside ourselves.

Over the next 200 years, many other persons such as Benjamin Rush, Julius Wagner-Jauregg, Manfred Sakel, Neil Macleod, Walter Freeman, Melanie Klein and Wilhelm Reich, came up with similar theories about causes of mental illnesses, each of which resulted in its own treatment, which became famous for a period but was actually ineffective. Some of these treatments had mortal side-effects and none of them had any empirical basis.

Theories of Sigmund Freud

The most influential among these theories about causes of mental illnesses were those advanced by Freud (1856-1939) in early 20th century. His most celebrated book was, The Interpretation of Dreams, which explained the role of subconscious mind and its unresolved conflicts, leading to mental illness. Freud divided the mind into different levels of consciousness - 'id' (source of instincts and desires), 'superego' (voice of conscience) and 'ego' (everyday consciousness).

These ideas revolutionised psychiatry and became the dominant way to understand and treat mental illnesses. Like the other theories mentioned earlier, even Freud’s theories did not have any empirical evidence and psychoanalytical approaches helped few, if any, persons with serious mental illnesses.

Freudian treatment required the doctor to remain remote and impersonal. As recently as the 1990s, psychiatrists were still being trained to stay aloof, deflecting a patient’s questions with questions of their own. About Freud, Lieberman writes, “Freud did teach me the invaluable lesson that mental phenomena were not random events; they were determined by processes that could be studied, analysed, and, ultimately, illuminated. Much about Freud and his influence on psychiatry and our society is paradoxical—revealing insights into the human mind while leading psychiatrists down a garden path of unsubstantiated theory.”

New Psychiatry After Second World War

Till 1940s, there was no other way to treat mental illnesses except for Freud’s psychoanalytic approach. The first medicines for treating the three most common mental illnesses were all discovered after the second world war - Chlorpromazine for treating psychosis, Imipramine for treating depression and Lithium Carbonate for treating the bipolar disorder.

The impact of these medicines was dramatic. For example, Lieberman evokes the impact of using chlorpromazine with the following words.

“On January 19, 1952, chlorpromazine was administered to Jacques L., a highly agitated twenty-four-year-old psychotic prone to violence. Following the drug’s intravenous administration, Jacques rapidly settled down and became calm. After three steady weeks on chlorpromazine, Jacques carried out all his normal activities.” It is hard to overstate the epochal nature of Laborit’s discovery. Like a bolt from the blue, here was a medication that could relieve the madness that disabled tens of millions of men and women—souls who had so very often been relegated to permanent institutionalization. Now they could return home and, incredibly, begin to live stable and even purposeful lives.

During 1960s, another researcher-psychiatrist Eric Kandel, showed anatomical changes in brain linked with memory and opened the pathway to the understanding of biological causes of mental illnesses in the brain. During the 20th century, the only way to study brain was through autopsies and brain operations. After Kendel, a large number of biologists, geneticists, neurologists and other scientists, using other innovative technologies such as MRI, started studying brain and its functioning in live persons, providing new insights about mental illnesses.

The 3rd area of big change which initiated in the 1960s and has now become widespread, is to move away from psychoanalysis as suggested by Freud, and replace it with psychotherapies starting with Cognitive Behaviour Therapy (CBT) pioneered by Tim Beck. The unexpected success of CBT opened the door to other kinds of evidence-based psychotherapy such as interpersonal psychotherapy, dialectical behavioral therapy and motivational interviewing.

Future of Psychiatry

Lieberman proposes a pluralistic vision of psychiatry: “Mental illness is not only biological and is not only psychological – it involves both brain and mind in different ways. Treatments include psychotherapy and psycho-pharmaceuticals.” He also lists some of the promising areas of research which should improve the impact of psychiatry in the future - genetics (how certain patterns or networks of genes confer different levels of risk), new diagnostic tests for mental illness (including genetic tests, electrophysiology-tests, serological tests and brain imaging tests), and new developments in psychotherapy based on cognitive neuroscience.

Some researchers are combining psychotherapy with medicines to increase their impact. Drugs that enhance learning and neuroplasticity can increase the effectiveness of psychotherapy and reduce the number of sessions necessary to produce change. For example, cognitive-behavioural therapy (CBT) can be combined with D-cycloserine, which enhances learning by acting on glutamate receptors in the brain, and strengthens the effects of CBT.
Internet-based applications for mobile devices that assist patients with treatment adherence, provide auxiliary therapeutic support, and enable patients to remain in virtual contact with their mental health providers, are another area for the future development.

Conclusions

I loved Liberman’s book because it gave an overview and understanding about mental illnesses and what can be done about them.
Unfortunately, strange ideas about causes of mental illnesses, not based on any empirical evidence, continue to be common even today, attracting big group of followers. Lieberman has written about the current popularity of the ideas of one such person (Daniel Amen) and his propagation of another theory which is not based on any empirical proof. Charismatic persons have always had this power to make people believe in their extravagant ideas and only time shows that their fame was built on a false premise.

The book made me understand that boundaries between what I understood as “mental illness” and “mental disabilities” are porous and dynamic. Even my notions of separating “neurosis” (mental illnesses where persons do not lose touch with reality) and “psychosis” (mental illnesses where persons lose touch with reality) are not very useful categories. Similarly, it is no use looking for the right answer to mental illness in only medicines or only psychotherapy - a pluralistic vision where both medicines and psychotherapy may play a role can be better.

*****

Note: The two images used in this post are from a "dance therapy" session for persons with mental illness in Brazil

#mentalillness #psychiatry #bookreview #historyofpsychiatry

Challenges of Emancipatory Research

Recently I spoke about Emancipatory Disability Research (EDR) in a conference in Italy. This post presents some of the key points from that presentation, with a special focus on challenges of conducting EDR in a rural or peripheral area of a developing country.

This is my 7th article about Emancipatory Research and if you wish to learn more about this research approach, you can check the whole list of the articles.

EDR in Developed and Developing Countries

In 1990 Mike Oliver (1945-2019) proposed the basic idea of Emancipatory Research - A research about disability based on the social model and carried out by persons with disabilities. He suggested that such an approach will provide information which can't be provided by non-disabled researchers.

The university courses on Disability Studies starting in late 1990s, spread the idea of emancipatory research. Thus, most examples of EDR come from developed countries which run courses on disability studies. There are a few examples of EDR conducted by persons from developing countries, studying in the universities in Global North, who did their research in developing countries. Many of these were researches conducted by university-educated individuals with disabilities and involved personal stories or in a few cases, a small number of persons with disabilities.

On the other hand, the model of EDR developed in the AIFO projects in developing countries over the last 10 years, is different. Here the research is carried out in collaboration with the local Disabled People’s Organisations (DPOs), while persons with disabilities from communities are given a short training and become the researchers. Their research has a collective approach and it focuses on the main barriers they face in their lives. A process of information collection followed by reflections and collective discussions are essential parts of these EDR initiatives. I like to think of these as the Freirian model of EDR, since it seems to reflect the ideas of Brazilian Pedagogist Paulo Freire.

All my discussions in this paper are based on my experience in EDR in developing countries in the AIFO Projects.

Freirian Model of EDR

I think that before proceeding further, it will be important to understand the general process of EDR implementation in AIFO projects:

(1) It is a part of an on-going community programme. The programme staff plays a key role in initiating discussions with DPOs and other stake-holders about conducting EDR.

(2) DPOs and community organisations such as Self-Help Groups (SHGs) are used to identify persons with disabilities who will be trained, who will become the researchers and carry out the research.

Depending on the country, local context and the activities of the community programmes, the researchers can be persons with different education levels (including illiterate persons), men and women, of different age groups, with all the different kinds of disabilities and different severity of disabilities.

(3) A group of persons with different kinds of expertise are also identified to create a Technical Advisory Group (TAG), which supports the researchers by helping to plan the research and providing feedback about the research process. This group includes academic researchers and disability experts.

(4) The researchers are provided a brief training (mostly 4-5 days), focusing on examining the different possible causes of a problem, the concept of barriers and the social model of disability, how to conduct interviews, how to carry out accessibility audit, basics of ethics, privacy and bias, and how to prepare a report. The final session of the training helps them to discuss and identify the problems about which they would like to conduct their research.

(5) A research plan is made and a calendar of activities is prepared with the support of the Programme staff. Researchers visit their communities, interview authorities, service providers and other disabled persons to collect information about their selected problem.

They meet periodically to share all the information collected about a problem and reflect on their findings. Sometimes they invite other persons as guests to these meetings. They also think about and discuss the possible solutions and strategies to address those problems, including what they can do themselves, what can be done at community level and what can be done by the DPOs.

(6) The research may last at least a few months, more usually a year or even more. All their meeting reports including their findings, reflections and suggestions are reviewed by the programme staff, DPOs and TAG members, who can provide feedback, additional information and comments.

(7) As mentioned above, the process of enquiries, discussions and collective reflection on specific issues is similar to the principles of Freirian Praxis as used in Participatory Action Research (PAR). Often, during this process, the researchers along with other persons with disabilities in the communities and with DPOs, can initiate specific activities to respond to the needs they have identified.

(8) The whole process is accompanied by a reporter, a person who documents all the findings, discussions and follow-up activities.
Challenges of Freirian model of EDR

Over the past 10 years, I have been involved in 6 EDR projects in AIFO projects (2 in India, one each in Palestine, Italy, Liberia and Mongolia).

Challenges of EDR

Some of the key challenges of these researches in my experience have been the following:

Involving persons with specific disabilities as researchers: The EDR process promotes empowerment of disabled persons who are involved as researchers. However, not all persons benefit equally. Some persons, who are very shy and lack self-confidence, they require a lot of effort and support in the beginning and often other researchers get impatient with them and ask to replace them.

Persons with specific disabilities such as deaf persons, persons with cerebral palsy, persons with intellectual disabilities, persons with mental illness, and persons with leprosy, are usually excluded from EDR. Usually they are not so active in DPOs. Both DPO staff and Programme staff, may think that it will not be easy to work with them. Thus, they are often excluded and it requires persistent dialogue with DPOs, staff and other disabled persons to convince them about their inclusion.

Participation of women is another key issue. Even DPOs which have strong women leaders in top positions, are not able to convince communities to select disabled women as researchers. Even when selected, often men dominate the discussions and when women speak, the men may laugh or make comments. It requires continuous dialogue with researchers to make them aware about these biases.

Unrealistic expectations from the research: Some times DPOs and Programme staff have completely unrealistic expectations from the research. After 4-5 days of training, they think that researchers can do all kinds of qualitative and quantitative research. They may have little patience in supporting researchers who have difficulties in articulation or who are slow in understanding. Sometimes they expect specific kinds of written reports from researchers and can be too severe in their criticisms.

NGO programme staff can also be dominating and interfering in the research process, imposing their ideas on the researchers.

Limited Support of TAG experts: Most of the time, persons invited to become part of the Technical Advisory Group (TAG) of experts of an EDR are busy persons with a lot of responsibilities. Unless invited to a specific EDR activity to conduct training or provide advice, they may not have the time to read EDR reports and provide feedback and advice to the researchers. At the end, it is important to ensure that at least 1-2 persons with good research experience follow and support the whole EDR process, while the specific support from the remaining expert members of TAG needs to be negotiated.

Reporter: The person selected to write all the EDR reports is the interface between researchers and the rest of the Programme team and TAG members. Having a capable person in this role, can be the most important factor in ensuring success of EDR. The person should be articulate and computer literate.

We have tried with both kinds of persons in this role - person with disability as well as, a non-disabled person. Both can be a support or a hindrance to the process.

A disabled person as a reporter can be too anchored to his/her own disability experience and thus become an obstacle to free discussions in the group. Specific disabilities may limit his/her interaction with other researchers. Having fixed ideas about what should or should not be done about specific disability issues, can also block open discussions in the group.

A mature person who is self-secure and does not need to dominate others, who can raise question gently, and facilitate constructive and open discussions which are inclusive of all the researchers, is needed for this role.

Language issues: In rural areas where EDR is carried out, often persons with limited education can only speak and understand local dialects. Reporter and programme staff may not understand these languages. Even researchers who can understand these languages, may not be able to translate all the ideas and concepts in to the official language. Thus, often important information can be lost in the translation and may not be a part of the official research reports.

Community activities: Many discussions and at least part of the activities stimulated by the EDR process take place in communities and small groups, outside the formal meetings. Researchers may not understand the importance of bringing all this news and information to the reporter.

Difficulties Related to Formal meetings - these have pre-decided agendas and limited time. In these meetings, there may not be enough time to share general information about what is happening alongside the research process. Even when researchers bring this information, the reporter may not see its relevance.

Thus, many collateral developments related to EDR are ignored in the official reports.

Measuring Empowerment: A key goal of EDR is to promote empowerment of the disabled persons participating in the research. While there is a lot of anecdotal information about how the researchers and other disabled persons feel empowered in this process, there is no standardised way to measure the change in empowerment of individuals. While there are some attempts to measurement of empowerment (such as by the World Bank), these are not practical for use in the context of EDR.

Conclusions

The Freirian Model of EDR needs more reflection and understanding. If similar models are being tried anywhere in the world, it will be good to exchange information with them.

EDR can not answer all kinds of research questions. It can play an important role in understanding how local contexts and cultures, including lack of proper infrastructure and lack of services, influence the barriers faced by persons with disabilities in developing countries. These experiences of EDR can provide a richness of details about people’s lives and about the solutions they find to overcome their barriers, that may be difficult to get with any other research approach.

There is still a lot about the Freirian model of EDR, which needs to be understood and defined.

*****

Secularism & Inter-Religious Harmony

A few months ago, I was in Kochi in south India, where I met a guy involved in a project of cultural mapping of Fort Kochi, which looked at how people from different parts of India, as well as persons coming from other countries had settled here over a period of centuries. It mapped their residential areas, heritage sites and worship places. It was a very interesting discussion.

Afterwards, thinking about that discussion made me ask myself – 

(1) What kind of norms and rules they had in ancient India which guided the settling-down of different outside communities, to ensure harmony with the pre-existing communities already living there?

(2) Another question in my mind was – how were those old Indian norms and rules different from the ideas of secularism today?

My questions reflected the situation in Europe, where we are seeing a kind of popular backlash against immigrants and refugees. Thus, I was asking myself, can there be something we can learn from the experiences of inter-religious harmony in India?

This post is a reflection on the theme of secularism and inter-religious harmony.

Ideas of Inter-Religious Harmony & Secularism

There are some fundamental differences between the concepts of inter-religious harmony and secularism. Inter-religious harmony is about how different groups live together while secularism is a state policy. However, the two concepts are inter-related and influence each other.

Experiences of inter-religious harmony depend upon how the different groups co-exist together in the community. The old proverb, "Live in Rome like the Romans do", indicated the ideals about inter-religious harmony in the west. We don't have similar proverbs in India, becaue it was and is guided by philosophies that accepts a diversity of beliefs.

The western ideas of secularism were defined at the time of theocratic state, when the Christian church held both the state and the religious powers. Secularism's goal was to separate the religious powers from the state powers. However, today most discussions about secularism are about how the Governments deal with and treat persons of different cultures & religions among their populations. These ideas developed in the West, are today seen as universal by a lot of persons, also in India.

I feel that these two ways of thinking, the traditional ideas in India and pagan cultures about inter-religious harmony and those of the secularism, are different though we do not have a clear understanding about those differences. For example, I think that the ideas of secularism are idealistic, they are about how progressive persons would like to see multi-religious societies and are focused more on safeguarding the rights of minorities, which are seen as weak and oppressed. On the other hand, the ideas of inter-religious harmony are more pragmatic and focus on a balance of powers between the groups, in which the majorities often dominate but are respectful of the minorities.

I also think that today most well-educated persons including academics, thinkers, writers and progressives, look at events in our societies mainly through the prism of secularism. On the other hand, most ordinary persons, continue to use the lens of inter-religious harmony. In the communities, there can be a mismatch between the two.

Understanding the Norms of Inter-Religious Harmony in India

The first Christian and Jew Communities came and settled near the coastal areas of south India about 2000 years ago. When Islam arrived in the middle-east, other migrants like Parsi, Baha'i and Armenians arrived in India. Over the centuries, different waves of immigrants from India and abroad also arrived and settled here. Most of these communities prospered and with time, their numbers increased. Till a couple of decades ago, this was a dominant narrative about India, which accepted that the Indic religions were open to people of other religions and welcomed them.

During the recent years, gradually the openess and welcoming of Indic religions has been replaced with dominent narratives about "militant and violent Hinduism", especially in relation to the relations with Muslims. I think that this change in narratives does not express a real change about the way Indic religions look at different religions but has other origins.

I believe that it will be useful to understand the different ways in which the Indic religions dealt with refugees arriving in India, who belonged to other religions.

For example - what kind of rules were made by the local kings to accept the persons belonging to different cultural and religious communities, to ensure religious harmony? What do accounts of foreign visitors to India over the centuries tell us about this theme?

How are those older norms and rules, similar to and different from the ideas of secularism dominant today? I searched online but, apart from some generic mentions of Ashoka’s edict and Akbar’s rule, I could not find any academic papers or research work that looked at and analysed the older norms and rules to foster inter-religious harmony in India.

Learning from Personal Experiences of Religious Harmony

I grew up in a multi-religious environment with the idea that our religions were an opportunity to have fun and enjoy the different customs & festivals. On Eid day, our Muslim neighbours prepared sweet sewaiyan (vermicelli) and brought to us, just like on Deewali and Holi, we shared our sweets with them. On the Christmas eve, I accompanied a friend to the mid-night mass in the cathedral, while he was equally enthusiastic about playing with the colours of Holi. On the Gurupurab day, all of us woke up early to get a glass of Kachi lassi from the processions of the Sikhs.

From those experiences what lessons I can draw regarding inter-religious harmony? I think that the first lesson would be that we can have our own religious beliefs but we must have equal respect for other people to have different beliefs - thus reciprocal or mutual respect is fundamental in ensuring harmony. One sided respect, expecting others to respect your ideas and insisting that only your ideas are correct and must be applied universally does not lead to harmony. This mutual respect should be explicit - for example, it can be expressed by participating in each other's special moments such as festivals.

There are only a few countries in the world which have long histories of multi-religious societies. India is one of them where today the religious minorities are made of more than 150 million persons. Jerusalem is another city that comes to mind, which has a significant population of persons of different religions, though it has faced much greater religious strife.

The Ideas of Secularism

I think that secularism is interpreted very differently from the ideas of religious harmony that I had learned. Often, it means special protection of minorities.

I find some ideas of secularism a little problematic. For example, many believe that secularism means recognising that we all belong to different religions and we should take care to not to offend the persons of other religions by talking about our religious customs and festivals. So, you are not supposed to say “Happy Christmas” to non-Christians or “Eid Mubarak” to non-Muslims. You are not supposed to have Christmas trees in public places and are supposed to make only generic greetings like “Seasons’ greetings” to persons of other religions. I think that this way of thinking, it says that my religious identity is fragile and can be easily offended if any ideas of other religions come near me.

I think that a part of the populist backlash is because of the way some such secularist ideas have been perceived by people. Often when someone does not agree with any of these ideas, there are no spaces for dialogue and discussion as these persons insist that the only acceptable way to live is their way.

I don’t think that the cultural and religious majorities can be silenced by impositions, especially if they perceive them as unjust. Rather, it is a recipe for building rage, which can also explode in backlashes and violence. A process of open dialogue and debates around norms for inter-religious harmony are needed.

Personally, I also feel that we need to study the explicit and implicit traditional norms and rules of communities which govern co-existence of persons of different cultures and religions. It is possible that some of these norms and rules would be discriminatory, and there needs to be a discussion about them with communities. Using secularism as an ideology for protection of minorities can be imposed by law but it will not lead to inter-religious harmony.

Conclusions

I have to confess that my ideas on this subject are not very clear. This post is my way of starting a personal reflection on this theme. They are very much influenced by my growing up surrounded by persons of different religions in India, while the secular concerns dominating many of the discussions seem to me like playing games of identity-victimhood.

The ideas of secularism are relatively new while for centuries people of different cultures and religions have inter-mingled and lived together. India has many examples of inter-religious harmony going back to hundreds of years. We should not ignore the lessons from those experiences. Secularism should not become a way to protect the fundamentalist and ortodox ideas of some.

I believe that there is a need for serious studies to understand the kind of strategies used in different epochs in India and in other parts of the world, that allowed long periods of inter-religious harmony and compare them with the modern ideas of secularism, to look at their differences, similarities, challenges and advantages. Such a critical dialogue will be critical for mixing of people in the globalised world.

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Note: The pictures used with this post are from an exhibition of globes in old Jerusalem, a place where Jews, Christians, Muslims and Baha'i have their holy land and where inter-religious harmony faces a lot of challenges.

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#interreligiousharmony #secularism #india #jerusalem #secularism