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.

*****

#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.

*****

#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!

*****

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