County Report: Disability in Liberia

Earlier in 2018 I was involved in the preparation of a report on disability and rehabilitation in Liberia. It was a part of the “Disability And Start-Ups” (DASU) project of AIFO/Italy with funding from AICS, the Italian Agency for Development Cooperation.

In this article, I want to share some of my reflections from this effort. You can download the full report (PDF, 1.4 MB) and the Summary Report (PDF, 0.6 MB).

Background

I was asked to carry out a diagnostic study to look at the capacities, skills and needs of the organisations of persons with disabilities (DPOs) in 3 counties of Liberia – Bong, Grand Gedeh and Nimba. The information collected from this study would have helped the project to plan the training of the DPO members.

In 2006, the United Nations (UN) had approved the Convention on the Rights of Persons with Disabilities (CRPD). This Convention asks the Governments to involve the DPOs in planning the different disability related activities. At the same time, the DPOs are expected to monitor if the Convention is being implemented properly in their countries and to provide their independent reports to the UN. For all these roles, DPOs need specific knowledge and skills.

DASU project focuses on capacity building and strengthening of DPOs in Liberia by working in collaboration with the national umbrella organisation called NUOD (National Union of Organisations of Disabled) that unites all the Liberian DPOs. NUOD representatives joined me for different activities of the diagnostic study.

DASU project focuses on livelihood and economic independence of disabled persons. However, a separate baseline study on livelihood-entrepreneurship was planned in the project, so in my study I did not look at these aspects and my focus was wider and more general.

Conducting the Study

Our original plans for diagnostic study had to be slightly modified – considering that some groups of persons with disabilities were greatly under-represented in the county DPOs, it was decided to also involve 2 national level DPOs from Monrovia in the process: the DPO representing persons with mental health issues called Cultivators for Users’ Hope (CFUH) and the Liberian National Association of the Deaf (LNAD).

At the beginning and the end of this article you will find the links to download the full and the summary versions of report. However, here I would like to explain a little more about the Desk Review component of the study.

Desk Review on Disability & Rehab in Liberia

The Desk Review was supposed to look at the available information about DPOs and NUOD in Liberia including any formal and informal publications and reports.

I was prepared to find little published information regarding the county level DPOs. However, a large number of foreign-aid and development projects had been implemented in the country in the decade following the end of the civil war in 2003. Thus, I was expecting that there would be plenty of information regarding the Disability and Rehabilitation (D&R) from the foreign-aid and development sectors.

However, I was surprized by an overall lack of materials and information about D&R. There were few reports prepared in a past few years and they had patchy information. For example, about the number of persons with disabilities in Liberia, these reports cited a survey carried out by a UNICEF project in 1997 while the disability data collected during the national census in 2008 was largely ignored.

Reasons for Lack of Systematic Information About D&R

A bit of digging in different archives and talking to some key persons, brought out some of the underlying causes of this lack of available information about D&R sector in Liberia. These included the following:

(1) Civil war in Liberia: The country went through a brutal civil war from 1989 to 2003. Almost 8% of the Liberia’s population died during the war while more than one-third was displaced. The war destroyed most of the country’s infrastructure, including schools and hospitals. The war created huge challenges. For example, at the end of the war, there were about 21,000 child soldiers who had to be integrated and rehabilitated. Thus, it is easy to understand why there was little information available about Disability & Rehabilitation services from the pre-2003 period.

(2) The Post-Civil War Reconstruction: The rebuilding of the country after the civil war started slowly. In the D&R sector, the Government took quick decisions but these were not followed by effective implementation. For example, an autonomous body called National Commission on Disability (NCD) was set-up in 2005, but till 2011, it did not have any staff or budget.

On the other hand, slowly but surely, Liberia had started growing and became one of the fastest growing economies in Africa. In 2013, Liberia’s GDP was growing at around 8%.

(3) Ebola Virus Crisis (EVC): In 2014 when EVC broke out in Liberia, the Government had already started to work on a national Disability Action Plan (DAP). The crisis brought everything to a standstill as businesses closed, programmes stopped and the international collaborations were blocked. All the expatriate staff of the foreign-aid and development organisations left the country in a hurry, taking with them their reports and information - few, if any of these reports were available on the internet. The GDP growth of Liberia turned negative.

The EV crisis was officially closed in 2016. After that the country is slowly growing back. For example, in 2017, the GDP growth has been a little more than 2%.

The international NGOs active in D&R sector in Liberia are still few (mainly AIFO/Italy and Sight Savers Int.) probably because the fears of Ebola virus still linger.

I can only guess that because of Ebola crisis, most of the archives of international organisations active in Liberia were lost. If they had any websites, they were also closed. Though NCD, NUOD and the national level DPOs still have persons who were there and saw the events of the past 20-30 years, there is little documented information or reports.

The Liberian disability organizations have access to very few resources and are fighting for their survival. They do not have resources to invest in documenting their histories and stories. I think that it is an area that would benefit from research and documentation by the university students from Liberia and abroad.

This is why I have enlarged the section of the Desk Review in my report, to provide a historical overview of the D&R sector in Liberia. However, I am sure that a lot of information is still missing. Persons and NGOs who had worked in the development sector in Liberia during 2003-2014, including the expatriates, probably they will have some of the missing information.

Conclusions

The Diagnostic Study on county DPOs in Liberia was published recently. However, I am planning to keep on updating it over the next couple of years. Thus, if you have any comments, suggestions or corrections regarding this report, I will appreciate hearing from you. If you have access to any specific reports or publications regarding disability and rehab issues in Liberia that are not mentioned in the bibliography of this report, do share them with me.

You can download the last version of the full report (PDF, 1.4 MB) on Disability & Rehabilitation in Liberia. The report is also available in a Summary (Easy to Read) version (PDF, 0.6 MB).

Finally, I would like to thank all the persons who made this work possible. These include a large number of persons from county DPOs, national DPOs, and NGOs in Liberia and AIFO office in both Liberia and Italy. My special thanks go to Naomi Harris, Daniel Dagbe and Heylove Marks from NUOD/Liberia and Ricardia Dennis from NCD/Liberia.

All the images used in this post come from my meetings with persons with disabilities and their organisations in Liberia.

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#liberiadisabilityreport #liberia #dposliberia #nuodliberia #personswithdisabilitiesliberia 

Is there still leprosy in India?

Recently in a Twitter debate, a message said that leprosy was eliminated in India in 2005. Then another person asked, “So it means we have no leprosy in India?” The answer was that India still has leprosy but it is below the WHO cut-off level, implying that it was no longer an important issue.

I intervened at this point, specifying that every year, India has about 130,000 new cases of leprosy and I feel that it is still an important issue for public health in India.

I can understand why people get confused. If it is true that leprosy was eliminated in India in 2005, then how can we still get 130,000 new cases of leprosy every year?

The answer is that in this case, WHO has a specific definition of “elimination” – it refers to persons registered for treatment for leprosy at the end of a year. If number of persons receiving treatment at the end of year is less than 1 per 10,000 population, according to this definition, it means that the country has “eliminated leprosy”. That is how, India has eliminated leprosy even if we get 1.3 lakh new cases every year.

The old definition of "leprosy elimination" when its prevalence goes below 1 per 10,000 population is an old definition and is no longer useful. However, in public health, old definitions can continue to have their own life and continue to create new confusions! To understand, how we came to this situation, we need to rewind and go back to 1989.

New treatment of leprosy

A new treatment of leprosy was proposed in the early 1982 by the World Health Organization (WHO). This treatment included 3 drugs – Dapsone, Clofazimine and Rifampicine. Being a combination of drugs, the new treatment was called Multi-Drug Treatment or MDT. Before MDT, people needed to take leprosy treatment for decades or even all their life without ever getting cured of the infection. With MDT, within 1-3 years, people could be completely cured of the infection.

Though MDT was such an effective treatment, hospitals and doctors treating leprosy were slow to adopt it. It was thought that doctors needed to carry out some tests before starting MDT and then directly supervise people receiving this treatment. Since in poor countries, laboratories for doing the tests and doctors to supervise the treatment were lacking, most people with leprosy were not given the new drugs, even if they were so much better compared to the old treatments.

In 1989, WHO had organized a meeting in Brazaville in Congo to talk about leprosy and MDT. I was there in this meeting. I don’t remember much about that meeting except for the dismay of many participants that in spite of so much efforts, in most countries less than 10% of the leprosy cases were being treated with MDT. The question was what to do to ensure that everyone could be treated with the new drugs?

Elimination strategy of WHO

In 1991, leprosy team of WHO came out with a solution to strengthen the use of MDT in treating leprosy patients - it was called the New Strategy for Leprosy Elimination. To promote the treatment with MDT, it asked countries to focus on bringing down the leprosy prevalence (by decreasing the number of persons being registered for treatment at the end of year) by the year 2000. As persons completed their treatment, their names could be removed and the prevalence would decrease. The idea was to ignore the number of new cases but to focus on giving them treatment and removing their names from the leprosy registers.

The key to bringing down the prevalence of leprosy was to treat people with MDT. To facilitate it, the treatment duration was decreased and diagnosis of leprosy was simplified – you didn’t need to do any tests for starting MDT and doctors were not needed to supervise the medicine-taking by the patients.

In India, new MDT programmes were started mainly in south India around the last part of 1980s and early 1990s. Only towards the end of 1990s, these MDT programmes reached north India. Only around 1998-99, India managed to treat all its new leprosy patients with MDT. Thus, India was not able to reach the elimination goal of WHO in 2000, but it managed to achieve it in 2005.

There was another idea underlying the elimination strategy – WHO experts thought that if we could treat all infected persons in a community, then the level of infection will drop, slowly the disease transmission will automatically decrease and new cases of leprosy will also come down over a period of time.

Leprosy elimination strategy had many positive effects – it managed to increase the MDT coverage to 100% - all leprosy patients started to be treated with MDT. However, it also had a negative effect – when countries reached the elimination goal, they thought that their leprosy problem was finished and often they stopped paying attention to it.

Leprosy in India today

As mentioned earlier, India still has about 130,000 new cases of leprosy every year. After India reached the “elimination” in 2005, we stopped routine looking for new cases of leprosy in the communities. Instead, now we expect them to report themselves to a Primary Health Care (PHC) centres and come for diagnosis and treatment. The Government is supposed to carry out mass awareness programmes so that persons suspected of having the disease can go to PHCs for a check-up. However, persons in villages are not always aware of the different changes and misconceptions about leprosy are common. In fact, many leprosy surveys carried out in India over the past decade, have shown that actual number of persons with leprosy in India is much higher than the official reports.

Over the past 10 years (2007 to 2017), the official number of new cases of leprosy in India has been relatively stable – in 2007, we had around 137,000 new cases, while in 2016 the number was around 134,000. Thus, so far the idea that if we treat everyone, the number of new cases will decrease automatically, has not turned out to be true. Perhaps, there are other factors contributing to this slow decline in number of new cases - for example, some doctors believe that highly infectious cases (LL cases) need longer treatment otherwise they might act as source of new leprosy infections in the communities. Some new strategies, such as "single dose Rifampicine" to persons at risk for prevention of leprosy are being tried.

Is talking About Leprosy Elimination Useful Today?

I feel that today it makes no sense to talk about “elimination of leprosy” in the way this goal was defined in 1991. We want people to come to PHC and get treatment for leprosy and at the same time we say that leprosy has been eliminated. It means that we are giving two contradictory messages to people, which creates confusion.

Over the past 3 decades, I have visited leprosy programmes in a large number of countries and seen the impact of MDT - I have seen the leprosy situation change in front of me. Today, most new cases of leprosy have few signs of the disease. If they take treatment, they get completely cured without any disfigurement. Thus, leprosy can be like any other curable disease. However, the situation is worse in far-away areas and even urban peripheries because of misconceptions and lack of awareness. People who come late for treatment, many of them end up with needless disfigurement.

This is also true in India, where persons living in isolated areas do not get early access to leprosy treatment.

All countries where leprosy is endemic are facing this situation. Many decision-makers and people think that leprosy has been defeated but in reality, we still have a significant problem and need good leprosy programmes to identify all the new cases and to treat them early so that they do not develop any disabilities due to the disease.

Conclusions

Today leprosy is easily treatable. It is no longer a dreaded disease even if many persons carry prejudices against persons with leprosy because of lack of knowledge.

Many countries including India, which have “eliminated leprosy”, continue to have significant number of new cases.

(1) I believe that we need to stop talking of “leprosy elimination” - today, it makes no sense. It only creates confusion in the mind of both health workers and communities.

(2) Decision makers need to accept that we have and will continue to have a significant number of leprosy cases in India in the near future, who will need to get treatment and other services. In fact, the current strategies of controlling leprosy need to be reviewed to focus on decreasing the number of new cases of leprosy and to reduce the number of persons who get disabilities due to leprosy. Fixing unrealistic targets to reduce leprosy is not the best way to go about it - it penalises hardworking and good leprosy workers, who are seen as a problem if they keep on finding a large number of new cases.

Note: The author was associated with ILEP (International Anti-Leprosy Federation) for a number of years as a member of the medical commission and as its past president. He has conducted evaluation of leprosy programmes in different countries of Asia, Africa and South America. He is one of the organisers of International Leprosy Mailing list and associated with IDEA, the international organisation bringing together persons affected with leprosy.

The images used in this post are from an evaluation of leprosy programme in some districts of Maharashtra in 2016.

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#leprosyinindia #leprosy #ashaworkers #primaryhealthcare #eliminationofleprosy 

Basvanna to Sankardev - Poet Saints of India

From ancient times, India saw a steady stream of social reformers. These included persons like Buddha and Mahavir in the pre-Christian times. Starting from 6th century CE for more than a thousand years, India saw a number of social and religious reformers who expressed themselves in devotional poetry, often wore the saffron cloth of the renunciation, and wandered around composing and singing songs of divine love, spreading messages of human dignity and equality. These reformers are often called the Poet-Saints and their movement is known as Bhakti-movement (Bhakti = Devotion).

This post focuses on two such poet-saints – Basvanna in Karnataka and Srimanta Sankerdev in Assam, and their profound and lasting impact on the society.

The Religious Belief Systems in India

Like other ancient religions in the world, what is today called Hinduism, did not divide people into “believers” and non-believers”. These terms were introduced by Abrahamic religions in the middle-east, which insisted that their prophet was the only true messenger of God and only their religious path was the right way to worship.

In Hinduism, there have been and there continue to be different streams of beliefs, that sometimes separate from each other, sometimes ran parallel and are sometimes mingle and conjoin. They all accept that they are flowing from the same source. On one hand, the Vedic streams of Hinduism are associated with the sacred fires of Yagna and see God as Onkar, the infinite formless consciousness that permeates all the universe. Then there are Puranic streams, with their multiplicity of gods, especially the trinity of Brahma, Vishnu and Shiva along with their respective consorts, Saraswati, Lakshmi and Parvati.

The different poet-saints of the Bhakti movement, were followers of these different streams of Hinduism. Many of them were followers of Shiva or Krishna. However, some of them also sang of the formless infinite God. Today some persons consider the followers of some poet-saints, such as those of Guru Nanak, Ravi Das and Kabir, as specific and separate religions. In my opinion, such considerations are influenced by the Western thinking, which is reductionist (looks at bits and pieces composing something) and prefers to categorize on the basis of differences. At other times, these considerations focusing on differences are linked to political and cultural struggles of these groups. However, personally I consider them as the multiple streams of Hinduism.

Bhakti Movement and Poet Saints

The earliest recognised poet-saints of the Bhakti Movement composed and sang their prayers in Tamil language in the 6th - 7th centuries. These were the devotees of Shiva, the Nayanars. They challenged the caste system and asked for a world of love and selflessness. Then there were Alvars, devotees of Krishna, starting from the 8th century.

The names and compositions of around 80 Tamil poet-saints (including both Nayanars and Alvars) are known. From Tamil areas, over the centuries this movement spread to the rest of India.

Then for almost thousand years, different parts of India saw these wandering mistrals, singing about casteless societies and divine love. Most of them wrote their songs in common local languages and many of them came from the so-called “lower castes” and humble backgrounds. They sang about divinity, promoted equality and at the same time, initiated a literary and cultural renaissance.

There were many women among them including Karaikkal Ammiyar, Tilakavatiyar, Andal and Madhurakavi Alvar in Tamil, Akka Mahadevi in Kannada, Gangasati in Gujarati and Meerabai in Rajasthani, who gave a message about the dignity and equality of women.

In north-west India, the Bhakti movement coincided with the arrival of different Muslim dynasties. It influenced them as well, giving rise to some Muslim poet-saints who followed the Bhakti tradition (Ras Khan and Rahim Das). It also influenced the wider Muslim community, especially through its interactions with the Sufi traditions.

Chronology of Indian Saint Poets After 1000 CE

A chronological-geographic analysis of the most well-known poet saints of India after 1000 CE shows the following names:

12th – 13th century: Basvanna, Allama Prabhu and Akka Mahadevi in Kannada; and Jaidev in Odishi

13th – 14th century: Namdev and Gyaneshwar in Marathi; Gangasati and Narsi Bhagat in Gujarati; and Ramananda in Hindi

14th – 15th century: Bhagat Pipa in Rajasthani; Guru Nanak in Punjabi; Purandhar in Kannada; Ravi Das and Kabir Das in Hindi

15th – 16th century: Chaitanya Mahaprabhu in Bengali; Shrimanta Shankerdev in Assamese; Vallabhacharya in Telugu and Hindi; and Meera Bai in Rajasthani.

16th – 17th century: Kanakdas in Kannada; Eknath and Tukaram in Marathi; and, Ras Khan and Rahim (Abdul Rahim) in Hindi

17th – 18th century: Vijay Das in Kannada; and Ram Prasad Sen in Bengali.

Poets in the above list classified under "Hindi language", include those who used its regional variants such as Braj bhasha, Khari boli, Avadhi and Maithili.

As the list above shows, the Bhakti-Saint reformist movement covered the whole Indian sub-continent and its different linguistic groups. The similarities of their messages and of the Gods they were worshipping illustrates the civilisation unity of India. 

Next, I want to talk about the legacies and continuing impact of two of these poet-saints with whom I am more familiar: Basvanna and Shrimanta Shankerdev.

Kannada Poet Saint Basavanna or Basveshwara

12th century Kannada poet-saint Basava, commonly called Basavanna or Basavanneshwara, composed songs known as Vachanas, filled with devotion for Shiva, which spoke against caste and gender discriminations. He was a minister in the Kalachuri dynasty of Kalyani. His followers are known as Lingayat or Virashaiva.

Along with other Kannada poet-saints including Allama Prabhu and Akka Mahadevi, he established a prayer and discussion centre called Anubhava Mantapa (in the image below), where both men and women of different castes were welcome to participate in philosophical and religious discussions.

His teachings are still followed by a large number of persons in Karnataka. His statues are common in the villages along with those of Ambedkar. In Basvan Kalyan in Bidar district of Karnataka, where the Anubhava Mantapa is located, a shrine of Basavanna has been built with his giant statue (in the image near the top). The image below shows him in princely attire.

Assamese Poet-Saint Srimanta Sankardev

The 15th century poet-saint from Assam wrote his devotional poems to Krishna in Assamese, Sanskrit and Braj bhasha (a dialect of Hindi) and had a tremendous impact among the Assamese people. Like Anubhava Mantapa in Karnataka, Sankardev (Shankerdev) is associated with religious and philosophical centres called Sattras. Apart from his devotional poems, he popularized traditions of Sattriya music, dance and theatre. He also promoted simple living, gender equality and casteless society.

His impact on Assamese society continues to be very important. Different Sattras are spread all over the state, the most important being those in Majuli island. (In the image below, a Satra in Guwahati)

Millions of his followers believe in simple life and prayers. For example, they have simple marriage ceremonies without exchange of money or costly gifts. For the prayers, they have Namghars, where the followers meet regularly, sing kirtans in front of book Bhagawat Purana (image below).

To Conclude

The singing and wandering poet-saints of India, over a period of about a thousand years, campaigned for gender equality and casteless society, though in vastly different ways.

Many of them were devotees of Shiva, a God associated with detachment, destruction and rebirth, and characterized by the ashes of cemeteries, snakes and a rag-tag group of followers including those who drink alcohol and use ganja or other drugs. Some Shiva stories also include bhoot-pichash (ghosts and demons) among his followers.

Others were devotees of Krishna, a God associated with the sermon of Bhagvad Geeta and also with the escapades of a naughty cowherd’s boy, known for his love for Radha.

I think that by choosing Shiva and Krishna as their personal gods, the poet-saints were moving away from the Rules and Obedience-based ideals of the Indian society, and promoting a more just and inclusive social system. They were also asking for more humane figures of gods, that were more accessible to people compared to the formless and infinite God of Vedas. (In the image below, a bass-relief of Shiva and Krishna from Shankerdev Kalakshetra in Guwahati)

They did not manage to banish the gender and caste-based discriminations all over India, though as the above examples from Karnataka and Assam show, they did have an impact on millions of people. Their influence was not limited to the different streams of Hinduism, but also had an impact on the different syncretic traditions of India including the Muslim Sufis.

Today we live in a different world. Though the Baul singers of Bengal and Assam can be seen as a part of the on-going tradition of poet-saints, they are more community-based, their names are not so well-known and their social impact is much smaller. However, in future the rise of the YouTube culture may spring surprises with new social-media poet-saints who are recognised in different regions and can spread the message of an equal, just and inclusive society -for transforming India. At least, I hope so!

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#poetsaintsofindia #basvanna #srimantasankardev #anubhavamantapa #namghar #sattrya 

Emancipatory Disability Research: Disability & Sexuality

To explain the basic concepts of Emancipatory Research (ER) and especially, to explain, how it is organised, I am going to present some examples of Emancipatory Disability Research (EDR). All these examples are about disability, but I think that the basic principles would be same for conducting ER with other groups of marginalised persons.

My first example of EDR is from 2001-02 on “Disability and Sexuality” in Italy. It was carried out as part of my thesis for a master degree in disability studies from the Leeds University in UK. It was also the only time in which I directly participated in the research-exchanges and that experience made me understand how sharing experiences, ideas and views can be so empowering.

Background

The idea of conducting a research on disability and sexuality came during a conversation with a friend who had lost an arm during an accident some years ago. She told me that after losing her arm, she had become sexually invisible to the men. Though at that time, I was married for more than 2 decades and was a father of a child, I found it difficult to talk about sexuality with others. I thought that doing a research on disability and sexuality would be a good way for me to overcome my inhibitions.

Most of the research carried out about sexuality of disabled persons looks at it as a problem, as a part of their impairment. It is often seen as something pathological, to be treated, cured and controlled.

I wanted to look at sexuality from the point of view of persons with disabilities. Expressing our sexuality is our human right. I wanted to see how families and communities look at and influence the desire of expressing sexuality of persons with disabilities.

The research involved a small number of persons (21), both men and women, above 18 years of age and with different disabilities. Except for one gay person, all the remaining participants were heterosexual. The research was carried out through emails and had only one physical meeting when the participants met each other.

Research Process

The whole research was in Italian and was later translated into English. It was organised in the following steps:An announcement was placed in some disability related newsgroups to ask for volunteers for a study on disability and sexuality.

Persons responding to this announcement were sent more information about the study and were asked to provide some general information.

The main research issues were defined in collaboration with the participants (25 persons).

Then over a period of four months, these issues were discussed with the participants through individual emails. 21 persons out of the 25 who had originally agreed, actually completed this phase of the research.

A huge amount of text material of our discussions about sexuality were collected. I analysed this material and produced 16 theme reports in Italian, which were shared and discussed collectively with most of the participants (a few persons preferred to have these discussions individually instead of collectively).

On the basis of the theme reports and discussions, I prepared a summary report in Italian (later translated into English, which was used for my thesis).

Though I coordinated the whole process and asked most of the questions, the participants were free to raise questions to me, including questions related to my sexuality. Throughout the process, I tried to be honest and sincere in my answers to all the questions asked to me.

Impact of the research

At the end of the research, most of the participants expressed appreciation of how it had been learning and empowering process for them. Here are the comments of two participants:

Anna: I am reading the reports on our answers and it is getting to be very interesting. It is an “experience” in the sense of reading what others think and feel, makes me feel very close to them … first I was speaking alone and now I hear voices of others and that is very beautiful. … I have to say that reading what you have written, what we have written, it is such a strange and moving experience that I can’t describe it. Every evening when I download my mail, I am hoping to see another of these reports and then after reading them, I think about them for a long time. When I started participating in this research, I didn’t think that it would be such an involving experience. Reading your words is like looking at myself through a mirror. Alice: I have read the report in the morning and for the whole day, I kept on thinking about it. I am reflecting on things that I had never thought about before. I went some times to the disabled people’s organisation office – but it is full of persons complaining all the time. I didn’t want to go back there again. I never felt part of a group of “disabled persons”. When people earlier used to say the “world of disabled persons”, I couldn’t understand what they meant. I never thought that by having similar needs we become similar persons … reading this report, it was like a flash of light in my head. Perhaps when the non-disabled persons say “you all”, it is not so strange after all.Note: The names of the persons have been changed.

For me personally, participating in this research was a life-changing experience. Some of the things which the participants wrote to me, they had a deep effect on me. Often, I spent whole days thinking about what people had shared. It prompted me to share more honestly my own thoughts with the others.

18 years after this experience, I still remember the strong emotions provoked by this research. With one participant, I continue to be friends even today. I feel that this research helped me to become more open about my own sexuality and also to be more accepting of other persons’ diverse ideas about sexuality.

Issues Discussed During the Research

This research touched on different aspects of sexuality - from our need of intimacy and the meaning of sex in our lives, to the role of masturbation, pornography or the experiences of sexual violence. It gave me a better understanding of how we are influenced and changed by the attitudes and expectations of the people surrounding us. It provided real life examples of how different barriers intersect and reinforce each other in the lives of disabled persons.

Some of the issues raised up during our discussions were completely new to me. For example, I had no idea about specific sexual aids for persons with disabilities, cybersex, telephone sex and devotees (persons who like to have sex with a disabled person). Our discussions were sometimes about pain and frustration, at others they were laced with humour and irony.

For example, during the discussion about devotees, one of the participants wrote, "If you know someone, let me know! I am only joking, I don’t think I want a person who wants me only because I am disabled and not because I am Alice, though it would be the first time in my life that my disability is actually useful for something!"

I think that it made me aware about aspects of sexuality that otherwise I would have never understood. For example, a few years later, while talking of sexuality with a transgender woman, she said, "I don't have a real vagina, so I can't really enjoy sex."

It made me think of my discussions with the participant of this research, who was a tetraplegic, had no sensations in his body below his neck and for him sex meant licking and giving orgasm to his girlfriend. He had never said that he could not enjoy sex, rather the opposite, he craved it! For him sex was much more than genitals - it was about affection, intimacy, complicity and the joy of having a deeper human connection.

For me, it was important to understand that both the point of views expressed above, that of the transgender woman and that of the guy with tetraplegia were equally valid.

Conclusions

If you wish to learn more about this research, you can download my research thesis (PDF).

I think that my thesis captured the spirit of this research. But it had a word-limit, thus I was forced to leave out a lot of things that were insightful and significant for me. Therefore, compared to the thesis, I feel that my 16 theme reports written in Italian were more powerful. For many years, I had thought of translating into English all those theme reports and sharing them online, but I never came around to actually doing it.

Doing this research convinced me about the importance of emancipatory research in which a group of marginalised persons can gain empowerment by talking to each other and by sharing experiences and ideas with each other in a systematic way that focuses on personal as well as, collective issues such as barriers.

Ever since that first EDR conducted 18 years ago, I have been involved in facilitating a number of such researches in different parts of the world. However, after that first experience, I have never been a part of the participants, who interact with each other. I remain outside the group, helping them to reason it through, train them in how to think about issues, help them understand and analyse their reports.

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#emancipatoryresearch #disability #sexuality #report #thesis

Sun-Rise At The Shore Temple

Shore temple of Mahabalipuram is a magical place, especially early in the morning as the sun rises over the Bay of Bengal and illuminates the early 8th century structure.

I had reached Mahabalipuram around noon and passed the whole afternoon looking at the rock-temples at the area known as Arjun’s Penance. By the time, I reached the Shore temple, it was evening and the entrance to the temple was closed. So, I decided to stay overnight in Mahabalipuram and made the plans for getting up early on the next morning to visit it. I am so happy that I made that decision because that early morning visit was truly magical.

History of the Shore Temple

In 700 CE when Rajasimha Varman became the king of the Pallava empire with its capital in Kanchipuram, the empire was nearing the end of its power. Over the previous centuries, his ancestors had built the seafaring empire with their ships going up to Rome in the Mediterranean. In the 6-7th centuries, the Pallava kings had built a large number of sea-facing rock-temples on the granite hills of Mahabalipuram.

Rajasimha ruled for 28 years and is credited with the building of the shore temple. Two new Shiva shrines were built around an older statue of reclining Vishnu. After Rajasimha, the power of Pallava kings gradually declined and in the 9th century, the area came under the Chola empire.

4 Shrines of the Shore Temple

The Shore Temple is composed of 4 distinct shrines – an eastern facing Kshatriya Simheshwar temple dedicated to Shiva; a western facing Rajasimheshwar temple also dedicated to Shiva; a partially open shrine surrounding the older statue of reclining Vishnu between the first two temples; and, an open-air step-well Shiva shrine to the north.

When I visited it, the eastern sea-facing Shiva temple was closed for repairs. Even the shrine to the reclining Vishnu was closed.

I could only visit the smaller west-facing shrine which has a central bass-relief panel depicting a family portrait of Shiva, with his consort Parvati and baby Ganesh between them, while their two older sons, Kartikeya and Skand stand behind.

On the north, the fourth shrine is located at a lower level with the steps going down. It has a hole where once there was Nandi’s platform, and then a Shivalinga, while Nandi’s statue lies close to the back wall. Since it was an open-air shrine, so probably they had made it at a lower level, to provide shelter from the wind.

Temple Complex

Entrance to the Shore temple is on the west where the ticket office is located about 200 metres away. The temple is located on a land jutting into the sea and the surrounding area has been landscaped.

As you walk towards the temple, you come across two stone platforms. Usually, in the temples, there is one platform with the animal representing the vehicle of the principal deity. Perhaps, the two platforms in front of the Shore Temple indicated that the temple had two main deities (Shiva and Vishnu), though now both the platforms have lost their statues.

Behind the two front platforms was the platform of the flag pole and a tiny Gopuram with steps going down towards the temple.

The outer wall of the temple complex was lined with a row of sitting Nandi bulls. After a corridor, there was an inner wall which had bass-relief panels showing Hindu mythological stories.

There was another Nandi placed above the entrance to the west-facing shrine. Thus, the whole complex very clearly underlines its affiliation to Shaivism.

Narsimha Stautes in the Shore Temple

The whole area also had many statues of another animal – the Narsimha lion, that looked like a sabre-toothed tiger. The image below shows a Narsimha niche with an Apsara on his right shoulder placed facing the sea, probably used for keeping a lamp as a light-house for the sea boats. Narsimha statues clearly represent the king during whose reign this temple complex was built. Thus, I wonder, if the Apsara could have been a representation of his queen or may be a family deity?

The image below is another representation of the Narsimha on the temple walls. There are many of these. I am not sure if there are other examples of Hindu temples where the king’s symbol is shown in such a prominent manner and so consistently.

The sea air with its humidity has affected everything in the Shore temple complex. Thus, most of the sculptures have lost their details.

Sunrise at the Shore Temple

When I reached the Shore Temple, it was still dark and there was no one else. Going around in the morning stillness was almost like a meditation. After about 20 minutes a few other persons came. On the other hand, the beach to the south of the temple, was already full of pilgrims in their red clothes, taking bath and selfies in the morning sea, with a few tourists clicking their pictures.

As I walked around, slowly the darkness receded and a sleepy baby sun peeked from behind the dark clouds on the horizon. To see the sun come out slowly and climb up in the sky till it was shining behind the shikhar of the temple, like a naughty boy playing with a mirror, was a moment of pure bliss.

Youth Follies

The first time, I had been to Mahabalipuram was in 1977. At that time, I had only visited the Pancha Ratha area. At that time, from the Pancha Ratha, you could walk towards the Shore Temple along the sea because there were no protecting walls or other buildings between the two. However, then I had thought that the shore temple was just an old ruin and not worth a walk.

This time, older and wiser, I spent the whole morning at the shore temple. It was an amazing visit and I will cherish the memory of this visit.

To Conclude - Sabrimala Judgement

Let me conclude this post with something completely different. The image below has a group of Sabrimala pilgrims at the smaller Shiva shrine of the Shore temple in Mahabalipuram.

A few days ago the Supreme Court in India has made a judgement about the entry of women of child-bearing age to the Sabrimala temple. I am not a religious minded person, I have never been to Sabrimala and I have no plans of going there, as my interest is more in spirituality. However, I feel that SC’s decision is a mistake.

I believe that parliaments and courts have a role in ensuring that our religions do not violate the fundamental human rights. If some practices are systematic, then we should look at them critically. However, I don't think that special rules for one individual temple violate the human rights of faithful, it is not a systematic discrimination. Such differences are a part of the richness and diversity of Hinduism, common in the way the religious faiths are lived in India, especially for the Indic religions. Insisting on eliminating that diversity of temple practices and promoting uniformity of the religious practices is a loss for humanity and it means accepting the views of fundamentalists who ask for narrow definitions of the religious practices.

If it was a common practice for all temples of the Sabrimala sect, even then, within the wide variety of Hindu religious practices, I feel that this diversity would be valuable to maintain. Only if it was a common practice in all Hindu temples, then it would be a systematic exclusion, which would need to be challenged.

I hope that the SC judgement about Sabrimala temple will become an opportunity for people to reflect on the richness of our cultural and social diversities of Hinduism and Indic religions and find meaningful ways to safeguard this heritage for the future. If we cancel our diversities of practices, then we lead to a monoculture of faith, which are contrary to the idea of Hinduism, even if fundamentalists would like to have such a world.

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#shoretemplemahabalipuram #mahabalipuram #shoretemple #hinduism #shaivism #shivatemple

Planning Emancipatory Research

My first 4 posts introduced some basic concepts related to emancipatory research (ER). With this 5th post, we are now going to look at more practical aspects of ER – how to plan an ER.

I believe that the ER can be a useful approach for promoting empowerment of different marginalised groups. However, all my experiences are in Emancipatory Disability Research (EDR). If you have used a similar approach for conducting research with other marginalised groups, I would love to exchange views with you. You can check the full list of my posts on emancipatory research.

Selecting the Research Themes

Identifying the research questions or the themes is fundamental for ER. The research questions should be such that they promote empowerment. ER needs to identify problems that are felt as important by the marginalised groups themselves.

For promoting empowerment, the research needs to focus on those problems in such ways so that the marginalised groups can understand the different dimensions and contributing factors of the issues. They need to ask why and understand why things happen in the way they do, and how do environment, state, society, community, families and they themselves contribute to it.

Using a human rights approach, which means focusing on peoples’ rights and how these rights are violated or not respected, is one way to stimulate people to fight for those rights and promote empowerment.

In Emancipatory Disability Research, this also means looking at issues through the social model approach focusing on the way different kinds of barriers (attitudes, resources, physical, legal, social, cultural) surrounding the persons with disabilities create and increase disablement, and limit their participation and inclusion.

Prerequisites for starting Emancipatory Research

Normally the desire for conducting ER will not come from the community of the marginalised persons – they do not understand it and how it can help them. Thus, ER has to be stimulated and supported by outsiders.

ER can only be a part of an on-going community-based programme or activities. You cannot just go as an outsider to a community and think of doing emancipatory research.

ER is conducted by the marginalised persons themselves, so if you are facilitating the ER process, be ready to give up control. Be willing to accept that people may decide to go into directions which you did not foresee or plan.

Academic researchers and other experts need to play a supporting role in ER. They must accept that they may have to sit quietly and listen (one of the most difficult things to do!). They have to give advice only when asked and they must not resent if the researchers (marginalised persons) do not accept their advice.

ER’s goal is to generate new knowledge from the point of view of marginalised persons and promote their own empowerment. The knowledge they want to generate may not seem so important to academic researchers and experts.

ER can only happen in a process lasting different months or years. Thus, ER cannot be completed in a short time by outsiders who go in for a few weeks, collect information and leave. ER is a "slow research" that requires its own time of maturation.

Identifying Researchers

Among the marginalised group of persons, you need to think of the persons who will conduct the research. Let me give you 3 examples from the ER projects in which I was involved to see how different groups of persons may be chosen:

(1) In an ER project in rural Karnataka in India, we wanted to look at the different barriers faced by all the different groups of persons with disabilities. We identified 8 groups of disabilities for the research (vision disabilities, hearing and speech disabilities, physical disabilities, etc.). We decided to identify 1 man and 1 woman with each of those 8 kinds of disabilities. We wanted both young and old persons, educated and uneducated persons, and persons living in district towns as well as those living in villages. So, in the end, in our team of 16 selected persons we had representatives from all these groups.

(2) In an ER project in Gaza in Palestine, we wanted to look at the barriers faced by young adult women with different disabilities. They identified about 25 adult women with different disabilities who were trained as researchers. It was impossible to identify women with intellectual disabilities and with mental health conditions for the role of researchers because the community workers could not understand how these 2 groups of women could contribute anything useful. This highlighted some of common negative attitudes against certain groups among the persons who may have long experience of working in the disability sector.

(3) In an on-going ER project in Mongolia, we are looking at the barriers faced by young persons (less than 30 years) with moderate to severe disabilities who live in the capital Ulan Baatar. We selected persons from different parts of the city including from the urban peripheries where families are poorer. We worked with Independent Living Movement Mongolia and other DPO federations to identify 35 researchers. However, finding persons of less than 30 years was a challenge and, in the end, we accepted persons up to 36 years old.

Thus, based on the objectives of your research, you need to define the criteria and a strategy for selecting your researchers. Usually persons with disabilities have their leaders who can speak out confidently. The challenge for ER is to find persons who are potential leaders, who may not be very confident and who may not be able to express themselves, but ER can help them to become more empowered and future leaders.

Training the Researchers

Persons from the marginalised group who have been selected as researchers need to be trained in how to conduct the research. The training will depend upon the research themes and methodology but in my experience, it is always important for them to understand how different factors influence a situation.

For example, if in our research we are looking at why children with disabilities are not going to the school, we have to think about existing education policies, attitudes (of teachers, of other children, of families), physical accessibilities, transport, school fees, skills of the teachers, number of children in the class, and so on. Most persons have some ideas about the causes of problems and it is important for them to learn to not focus only on their own ideas, but learn to see issues from different point of views. I prefer to dedicate one day of training to making the future researchers doing different exercises about the possible causes of different problems.

The researchers also need training about general skills such as how to ask questions, listening with empathy, being respectful to people, and being aware about their own prejudices. They also need to reflect on issues of confidentiality, privacy and ethics.

They may also need some specific skills such as how to run a focus group or how to interview persons, which will depend upon the research methodology.

Finally, the researchers need to understand the diversities of their own marginalisation. For example, in Emancipatory Disability Research, persons with disabilities need to understand the diversity of ways in which barriers affect them because of their different disabilities. Some of the barriers faced by a blind person will be very different from the barriers faced a wheel-chair user, while other barriers may be similar. Thus, I feel that it is important for the researchers to be aware of their own differences, acknowledge their own negative attitudes and learn to be inclusive.

Support Staff for the Emancipatory Research

The researchers selected from the marginalised groups will need a support system to carry out the research.

The most important figure among the support staff is that of a reporter – the person who will accompany each step and document all the research process. ER is almost always a qualitative research during which people talk, share stories and experiences. The reporter has to document all these discussions. Persons with research experience and background in areas like sociology, anthropology, nursing or humanities can be good at it.

Depending upon the research methodology, the ER process may need contributions from a statistician for the analysis of any data collected during the research.

Other support staff will be needed to organise the different research activities such as the organisation of meetings, group discussions, interviews and visits to the field. For example, researchers may need accessible transport services and accessible meeting venues. They may need materials in Braille or a sign language interpreter.

EDR also requires a group of committed experts including academic researchers who agree to follow the research and support the researchers during the different phases of the process.

To Conclude

Planning an ER requires committed research professionals who are willing to put themselves in supporting roles and give space to marginalised persons to think about and understand their own issues.

A perfect ER in which a group of marginalised persons completely controls all aspects of the research is an ideal – it is very difficult to achieve but we need to strive for it by constantly questioning ourselves and forcing ourselves to keeping quiet and listening, instead of intervening.

In my next posts, I will share information about my experiences in different ER initiatives.

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#planningemancipatoryresearch #disabilityresearch #emancipatoryresearch #edr 

Amazing Rock-Temples of Mahabalipuram (Part 1)

Mahabalipuram on the south-eastern coast of India is a city with some of the most amazing temples cut into granite rocks. Its name (Mahabali or the strong man + Puram or city) refers to the ancient Hindu legend of Bali and his son Banasur.

This first part of the post explains the history of rock-cutting for construction in India and some rock-temples located in the park around the area surrounding the rock-sculptures known as Arjuna’s Penance. Part 2 of this post looks specifically at Arjuna's Penance itself.

History of Rock-Temples in India

Humans had inhabited natural rock-caves since prehistoric times. With their primitive tools they had started creating niches in those rocks. For example, in Bhimbetaka caves near Bhopal in central India, you can see some of these pre-historic man-made rock niches called "cupules" (image below).

Since finding natural caves in rocky areas was not always easy, the next step was man-made caves in the rocks. In India, the earliest man-made caves are from around 2nd century BC, made by Buddhist monks (many of them include many Hindu deities as well), such as those in Ajanta (Aurangabad) and Kanheri (Mumbai) in central-west India. These caves were used as habitations and temples (Kanheri caves in the image below).

Over the next centuries, the idea of cutting rocks to create temples spread across central and south India. 5th to 8th century CE was the golden period of rock temples in India. In this period, a number of Hindu, Jain and Buddhist rock-temples were built in different parts of India – Rashtrakutas and Yadavs built Elephanta and Ellora (Maharashtra), Jain monks built Udaygiri (Madhya Pradesh), Chalukyas built Badami (Karnataka) and Pallavas built Mahabalipuram (Tamilnadu).

Building rock-temples required a lot of resources - to pay the skilled artisans who knew how to cut and mould the rocks over a period of years. Thus, each area of rock temples mentioned above, had a rich empire around it during 5-8th centuries CE. While there must have been some exchange of knowledge and skills between the artisans working in different parts of India, generations of artisans must have grown up and spent all their lives working the rocks in each of these places. Each of them developed their own specific styles. The rock-temples of Mahabalipuram are in what is called the Pallava style.

Process of Rock-Cutting Used in Mahabalipuram

Cutting the boulder must have been a long and hard work, requiring a knowledge about veins and planes of the rocks so that artisans knew where exactly to cut it. There are many other unfinished cut rocks in this area where you can see the process of cutting a rock and making rock-temples. For example, the image below shows that steps were cut in the rock and 3 niches were marked for making of statues, but the work was left unfinished.

Similar unfinished rocks show how they cut such a smooth surface on the huge granite boulders. They first made holes in a line on the rock surface as you can see in the image below.

The next image shows a cut boulder with markings on the upper edge showing the places where holes were made.

However, the holes do not seem to be very deep. So how did making holes in a line, divided the boulder in two parts with smooth surfaces? Did they have one deeper hole where they pushed in an iron rod to act as a lever? Did they use water in some way to force the separation?

Do you have any ideas how they did it - If so, please share them in the comments below.

Kinds of Rock-temples in Mahabalipuram

In Mahabalipuram there are four kinds of rock-temples:

(1) Open-air Bass-relief temples: Figures were sculpted on the rock surface.

(2) Temples in rock-caves: Caves were cut in the rock and then inside those caves, statues of deity in bass-relief or full sculptures were placed.

(3) Monolith temples: Big rocky boulders were taken and cut from the top-to-bottom, creating temples. In Mahabalipuram these are called “Rathas” (chariots).

(4) Built temples: Blocks of rocks were cut and then places one over another to create the temple.

Mammallapuram - Mahabalipuram: Myths & History

The original name of the town comes from the mythical king Bali, who was a very strong and powerful king. The legend says that Bali’s son was Banasur, who had imprisoned Anirudha, who was Krishna’s nephew and in love with Banasur’s daughter. Banasur was killed by Krishna. The town is also linked with the five Pandava brothers from “Mahabharat” and thus, different temples of the town are dedicated to them.

The rock temples of Mahabalipuram were built by the Pallava kings, who had their capital in Kanchipuram, 70 km away to the west, and who used Mahabalipuram as their port to export spices and silks as far as the Mediterranean and Romans.

The first temples of Mahabalipuram were built under king Mahendra Varman (580-629 CE). His son Narsimha Varman 1st, was a strong wrestler (Malla) and gave another name to this place – Mahamallapuram or Mammallapuram. His son Mahendra Varman 2nd, who ruled only for 3 years (668-670 CE), has his name inscribed in Adivaraha temple, where the town’s name Mahabalipuram is also mentioned.

The Ganesha Ratha temple was built under Parmeshwara Varman (670-690 CE) while Rajasimha (690-728 CE) was responsible for the shore temple.

Arjun’s Penance Monument Park

The main rock temples of Mahabalipuram are located in three areas, of which two areas are next to the sea – the shore temple and a group of five temples known as “Pancha Rathas”. This post does not touch those monuments.

The third area is a little away from the sea, where a granite hill is surrounded by a grassy land and this is known as the Arjun’s Penance area. Apart from the 1,500 years old temples, it also includes a light-house built in late 19th century under the British. It is very rich in monuments. This post is about some of the monuments of this area.

Trimurti Temple & the Round Water Tank

I entered this park from its north entrance, towards the Mahabalipuram bus-stand side. The first temple I saw was the Trimurti temple, which is a rock-cave temple with bass-relief statues of Brahma, Vishnu and Shiva.

The sculptures of this temple are not very finally chiselled. At the same time, while Vishnu’s statue was recognisable, those of Shiva and Brahma did not have the distinctive features that we normally associate with their iconography. For example, the image below shows the Shiva sculpture from Trimurti temple – it is only the lingam in the foreground that identifies it as Shiva.

Outside the rock-temple, there is a circular water-tank cut into granite. It does not have steps for going inside, so it was not built as a usual temple-pond for the pilgrims. While cutting the rocks, a lot of water is needed to cool the surface. So, I wonder if they had created the circular tank to store water for the artisans, both for drinking and for rock-cutting? It is too well made in a perfect circle, to be used just for storage, so its purpose could have been two-fold – storing water while constructions were going on and then to remain there as a symbol of beauty in front of the temple.

Krishna’s Butter Ball

Between the Trimurti temple and the rest of the park, there are some huge granite boulders and the starting of a ridge that goes up towards the hill. As I walked on this ridge, I came across “Krishna’s butter ball”, a huge round boulder with its top surface cut smooth, that seems to be resting precariously on the rocks.

It is the most popular tourist spot in the park, with people vying to get their selfies all around the boulder.

When I saw it, I asked myself if there was a story behind this boulder? Was it cut and then left in that place deliberately because it was visually striking? Or was it a work in progress which was left incomplete because of some external event like some war or lack of funds?

Ganesh’s Rath

This is a monolithic temple chiselled out from a single big boulder like a sculptor sculpts a statue. It is located a little to the south on the grass-land below Krishna's Butter Ball, along a rocky path that leads up to another granite hill.

It looks like the wooden temples on the chariots used for the annual functions in the temples when deities are taken out in processions. Perhaps that is why such temples are called “Rath” (chariot).

Since the sculptors start with these constructions from the top, their top parts are much more elaborate compared to the bottoms.

Rayar Gopuram

The path going uphill from Ganesh’s rath leads to other constructions on the top, with a raised platform and pillars, including an entrance gate, which could have been somewhat like a Gopuram, that became popular in the temple architecture some centuries later.

Other Rock Temples

As I walked around this area, I saw different rock-temples. Some of these had inscriptions, such as the one in Adivaraha temple in the image below, which I was told, includes the word Mahabalipuram. It would have been nice to have some boards outside showing the translations of the inscriptions.

The area has many epigraphs whose meanings are not clear and it is likely that some of those were used by the temple-planners and builders as their annotations.

The sculptures at the top of this hill are older and more finely made. For example, look at the image below showing the Vamana story when Vishnu assumed giant form and in three steps covered the whole universe, from one of the temples. This story is based in Mahabalipuram because in the myth, Vishnu had come as a Vamana to the Asura king Bali and tricked him into donating his empire. I loved this sculpture – it has Vishnu in the vamana form at the bottom and also in the giant form with his left leg raised up to an impossible yogic angle reaching out to the universe around him.

I also suspect that the 3 figures shown sitting at his feet include the king and some other important persons of that period – probably the king is the one sitting close to the right leg of Vishnu. However, it does not show the mythical king Bali.

Conclusions

This first post about Mahabalipuram shows the richness of iconographies and rock-cut sculptures from 1,500 years ago. If you are interested in art, history and archaeology, you can spend hours in each of the temples described above and discover new things.

The area known as Arjun’s Penance Monument Park has a large number of monuments - too many for one post! In this post I have limited myself to the northern and western parts of this area. The eastern and southern parts of this area, including the beautiful rock sculpture known as Arjuna's Penance  will be the subject of my next post.

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#rocktemplesofindia #rockcutting #ancienttemples #hinduism #india #mahabalipuram