Thought Is Also Matter - Raju Sutar

At the Kochi Biennale 2018-19 in India, I had a chance encounter with the Pune-based artist Raju Sutar, curator of one of the collateral exhibitions. We talked a little while we sat together to have a coffee.

I always love talking to artists of different kinds, especially when they are persons who think about their art and are aware of their own motivations and ideas about what it means for them. In that sense, talking to Raju was immensely satisfying.

The Theme of Raju’s Exhibition

Raju had curated the exhibition on the theme of “Thought is Also Matter”, which probed the distinction between conceptual art versus material art and concluded that the distinction is arbitrary, since concepts (thoughts) have material consequences in our brains.

I have been to a couple of Biennales in Kochi as well as, once to the Venice Biennale. While visiting the art installations in these events, looking at some of the conceptual art, often I asked myself about the boundaries between art and life, or between an artist and an art appreciator.

A lot of us, including me, we can appreciate art in daily life – from the way nature expresses itself, to casual juxtapositions of colours, forms and ideas in spaces, to the way cobwebs and discarded materials may express concepts. However, my doubt is - Is just appreciating that art-concept in the daily life and putting it together as an art installation, enough to make us an artist?

I think that there can be some extremes of such so called “art-installations” where the artist has conceptualized an art-expression from daily life, to hide his/her laziness and is using creativity to cheat. For example, look at the image below presenting the work “Melting Pot” by the artist Prabhavati Meppayil, which has rubble from a broken wall or a house as an installation. When I saw it in Kochi Biennale 2016-17, I thought that rubble can be artistic and it can have deeper significance of what it says about life, death, time and memories. Yet, an installation like it blurs the boundaries between an artist and appreciating art in daily life, and it probably illustrates my point about lazy artist.

Different forms of Art

I think of art biennales as events celebrating different kinds of visual arts. Finding video and sound installations in the biennales is another area of confusion for me. How is a video installation different from a video shown in a film festival?

One of the deepest emotional experiences for me in this year’s Kochi Biennale was the video and sound installation by the Iranian artist Shirin Neshat called Turbulent with two singers on two screens, one male and one female, on the two sides of a room. Yet, I wondered, how was this different from a film shown in a film festival? Does it mean that different art forms – dance, sculptures, films, singing, can be mixed and presented in all kinds of festivals? That thinking of different art forms and expecting to see specific things in an exhibition is old-fashioned? Isn't that taking and stretching the basic idea of "everything can be art" a bit too far, not in real life, but in organising art festivals?

Thought is Also Matter

Sorry for wandering off in different directions - let me get back to my discussion with Raju.

He explained that the idea of this exhibition came from the works of the American neuroscientist Candace Beebe Pert who had discovered the opiate receptor in the brain which binds the endorphins and who proved that thoughts result in chemical changes in the brain and thus turn into matter.

“Neuropeptide is a chemical protein. In reality it’s a piece of matter. And the mind-blowing truth is that it’s a new little piece of universe that didn’t exist just moments before”, he explained.

The exhibition “Thought is also matter” presents the works of a collective of artists from Pune, most of whom had been part of another exhibition called “Roots/Routes” curated by Raju in Kochi Biennale 2016-17. He said that once he had the theme of the exhibition, he talked with the other artists and together started reflections on how this idea can be expressed in different ways.

Apart from Raju’s own works, the other artists in this exhibition were Hrishikesh Pawar, Rajesh Kulkarni, Sandip Sonawale and Vaishali Oak. Let me share some information regarding their works.

Raju Sutar

Raju had paintings on huge canvases covering the whole wall. About these works he said, “Time is made of past, present and future. The past is in the memory and the future is in the imagination. ‘Now’ is present and in a moment, it becomes the past. This ‘now’ is the result of the past and it will shape the future. In fact, now, past and future are all together in one. I am trying to paint large canvasses in a kind of action painting way, as an action is now and not a moment of thought … by avoiding the movement of thought I am trying to look at the possibility of mutation to happen in the moment of ‘now’.”

Hrishikesh Pawar

Hrishikesh is a dancer and his installation called “I Travel/I/Arrive/Not” (ITIAN) brought together performance art (dance) with video and a sculpture of threads with beads. He is trained in kathak and contemporary dance, and has done many national and international performances. In 2007 he set up the Centre of Contemporary Dance in Pune.

The dancers in his installation asked the question, “Where do thoughts begin and end?” through an abstract rhythmic poetry of sounds, gestures and forms. The installation included live performances but they were not there on the morning when I visited it.

Rajesh Kulkarni

Rajesh’s installation had terracotta pots in different forms linked together by threads, ropes and steel wires, connected together in a kind of a galaxy. He works with clay and lives in a village, where he has an ancestral home, and where he runs “Aakar Pot Art”.

The ideas behind his installation was explained as: “thought that travels with speed, that has the fickleness of the present and at the same time, a strong flowing reality. Present that annihilates the moment it creates itself … the moment the present becomes past the energy that thought beholds transforms into enigmatic undiscovered form. The very abstract thought bunches and gathers together, packed in tiny particles, joining with multi-layered wired structures, electrifying, dynamic, flowing back and forth …”

Sandip Sonawale

Sandip is an artist and also runs a printing press. For this exhibition, he expressed himself through colours and basic forms such as circles and triangles.

By breaking down the art into the basic forms, he was “breaking down the thoughts in a similar way. The thoughts are complex in nature, we try to break them down to make sense …”

Vaishali Oak

Vaishali had 4 works in the exhibition, all made from fabric assemblage which expressed the idea of “Seed Post”. She works with fabrics, joins pieces together, layering them, and creating textures. She has been honoured by the National Academy Award from Lalit Kala Academy.

She looked at the ‘thought’ as a ‘seed’: “A seed is responsible for the future – future of trees, vegetation, life and the entire planet. A seed is also a possibility, ultimate and unlimited possibility … seeds of thoughts are invisible, one can witness it when a thought comes into action and becomes matter.”

Discussions with Raju Sutar

Apart from the installations in the exhibition, we also talked about some other issues related to art and artists in India. Raju teaches art and yet he said that he did not believe in formally trained artists and is open to persons who take up art because they have a passion for it.

I was a little surprised, so he explained, “Hardly any students come to study art because they are passionate about it. Most students in art college are there because they did not get admission in any other college. You can see in the class that they have no real interest in it.”

I could understand his point but I felt that he was too harsh. It may be true for most students in an art college, that they did not get admission in other more prestigious colleges/courses. Yet, in the end, they chose an art college, so perhaps they did have some interest in the subject.

He also felt that Kochi biennale is the biggest and most significant art movement in post-independence India. He was critical towards the ‘latest art fad’, that of the Conceptual art. He felt that sometimes it was all about concept and ignored the canvas, while for an artist, the canvas has to be important. He told me about a discussion he had many years ago with the well-known artist, M.F. Hussein saheb, “He said that these fads are iconic entertainment.”

In a way, the exhibition he has curated ‘Thoughts are also matter’ is an expression of his dissent with the way conceptual art is being used. “Today there is great insistence on concepts and everything else is looked down and is considered of less importance. I was thinking about the origin of the idea of conceptual art, and challenging it in different ways. I was interested in finding what is not a thought.”

Conclusions

The visit to exhibition “Thought is also matter” was very interesting because of my chance encounter with Raju Sutar and because of our discussions, which gave me a glimpse into the different ideas that were there as a foundation and which were developed in different ways by the artists.

Due to my own confusions about the boundaries of art and concepts, I found an echo of my thoughts in Raju's ideas about conceptual art.

*****

#conceptart #kochibiennale #rajusuttar #indianartists #artinindia #fortkochi #kerala #keralaindia 

When One Religion is Not Enough

Duane R. Bidwell’s book “When one religion isn’t enough: The lives of spiritually fluid people” (Beacon Press, Boston, US, 2018) is about persons who feel an affinity with more than one religious tradition. In this post I look at some of the ideas of this book. 

Growing up in India means growing up together with persons of different religions – India is the original multi-religious country. Often persons growing up in India can have different religions in their family histories and thus accepting different religious traditions is quite common. Duane is from a Protestant Christian background and his approach to looking at multi-religious identities seems more analytical, compared to the emotional approach I had while growing up in India.

About Duane R. Bidwell

In the book, Duane defines himself as: “I am Buddhist and Christian. Jesus is my savior, and the Buddha is my teacher … I am a minister of the Presbyterian Church (USA), part of the Reformed tradition of Christianity … I am more apt to feel tearful or joyful when chanting at the temple than when I am worshipping in church. Buddhism changes the way I know and experience God. It broadens and deepens my understanding and experience of Christianity … I identify as Buddhist/Christian because that’s what I understand God to be asking of me. I’m not worried about salvation, and I don’t mind incompatible doctrines.”

Different Approaches to Multi-Religious Identities

Persons like Duane, come from traditions that believe in one prophet or a “true God”, and when they find themselves attracted to different religious ideas, they need to find a logical explanation for their ideas. It is very different from the way I look at it, I don't need any explanations for it, it seems like a self'evident truth.

Thus, in the initial part of the book Duane raises some questions and his understanding about God:

How and why does someone become spiritually fluid? Are spiritually fluid people simply confused, syncretistic, unable to commit? Are they idolaters? How should we make sense of spiritually fluid people? Do they belong in our religious and spiritual communities? What might they teach us? And what do complex religious bonds imply about our own religious and spiritual identities, practices, and commitments?… I do not believe that God is one or that all paths reach the same mountain. Religions are not different descriptions of a single reality; they describe different (and sometimes related) realities.  
I was a little shocked when I read what Duane says here - "I do not believe that God is one or that all paths reach the same mountain." I think that a person who believes in there being different Gods for persons of different religions would look at persons having multiple-religious beliefs very differently from a person who believes that roads lead to the same God - these would be two very different ways of looking and understanding religious beliefs.

Different religions originated in India including Hinduism, Buddhism, Jainism and Sikhism – together these religions are called the Indic religions. In the Indic religions, we often say that God is one and all the different paths (religions) lead to that same ultimate truth.

Duane’s analysis of spiritual fluidity

Duane uses the term “spiritual fluidity” for persons having an affinity for more than one religion. He explains that people can come to this state of fluidity due to different events in their lives:

Normal spirituality believes in religious monogamy; people must leave one religion to cleave to another, taking on a new name, a new identity, a new set of beliefs and social mores. The old life is gone; a new one begins. But some people claim two (or more) religions at the same time. Maybe they belong to a Christian church and practice Buddhist meditation, or they grow up with a Jewish mother, a Hindu father, and an extended family that doesn’t expect them to choose one tradition or the other. Or they might publicly identify as Muslim while secretly praying to Hindu gods … it can confuse and perhaps threaten people who have only encountered singular religious and spiritual identities … More often it leads to conflict in families, communities, institutions, and individuals.

The problems in families and communities caused by belonging to multiple religious identities can lead to hiding of the true feelings – thus persons may outwardly show their beliefs only in their family or community religion, while hiding their feelings about their other spiritual beliefs:

Spiritually fluid people seem exceptional because cultural conversations in North America, Europe, and parts of the Asia-Pacific region position them that way. Public conversations tend to frame spiritually fluid people as privileged, subversive, or both—an attitude that keeps religious multiplicity out of the public eye … First, academic discourse tends to frame religious multiplicity as exotic, elite, and rare and therefore distant from what most think of as ordinary. Second, because it can be dangerous to violate family, community, and institutional expectations of normal spirituality, some spiritually fluid people—especially those bonded voluntarily to two or more traditions—fail to identify publicly as religiously multiple.Much of this (academic) writing assumes a normal spirituality, especially the ideas that (a) religious traditions have clear boundaries, (b) religions are primarily focused on doctrine, and (c) conflicting spiritual or theological perspectives must be reconciled. … Ordinary people who live religiously multiple lives are seldom celebrated and often unseen. They hide their multiple allegiances from family members who will not tolerate someone practicing a different faith; they mask themselves in one or more of their religious communities to avoid shame, judgment, punishment, or other negative consequences; and they switch from one type of religious language to another, depending on context.

Duane acknowledges the different approaches to "spiritual fluidity" among different cultures. Thus, while persons raised up in monotheistic religions feel the contradiction between the doctrines they have learned from childhood and their attraction to other spiritual ideas, indigenous persons growing up with more open traditions in Asia, Africa and South America do not always see any contradiction. Thus, in countries where monotheistic religions dominated, in the past, spiritual fluidity often had to be hidden. This may still happen to some degree.

Jewish families in Spain and Portugal converted to Catholicism to save themselves from the Inquisition but continued Shabbat rituals in secret, and Buddhists in Sri Lanka (then known as Ceylon) converted to Christianity to qualify for stable, higher-paying jobs but still participated in ceremonies at Buddhist and Hindu temples. In North and South America, governments insisted that indigenous nations “civilize” themselves by becoming Christian, a policy that made indigenous people hide their spirituality beneath a veneer of church language and practice … “The problem with Indian Presbyterians,” one denominational executive said to me more than a decade ago, “is that they want to be Indian and Presbyterian at the same time.”Outside the North Atlantic region, religious lines aren’t always so sharp. European missionaries encountered this porosity as they began to evangelize people in various regions of Asia. When Catholic priests arrived in India, for example, the emperor Akbar delighted the Jesuits who came to convert him. He assured them that he had indeed become a Christian—and then infuriated them by continuing to worship as a Muslim and, in many ways, a Hindu. This multiplicity was not what the Jesuits had in mind at all and is yet another incident that reveals how Europeans regarded the boundaries between religions as impregnable, whereas Indians saw the lines as rather porous.

Sometimes people adopt dominating religions because these allow them freedom from religious persecution or access to education, mobility and resources. Yet, at the same time, they may continue to believe in their ancestral beliefs, though they may hide these beliefs from their new religious companions.

Today’s complex religious belonging also reflects centuries of Christian expansion beyond Europe. Through encounters with local spiritualities and other religious traditions, Christian missionaries have seen spiritual fluidity as an option for centuries. Those sympathetic to local religions, like Ruben, sometimes developed spiritually fluid ideas, practices, and identities. At the same time, local residents forced or persuaded to convert to Christianity might continue to practice their original religions in secret. Other local people converted (or added Christianity to their mix of spiritualities) because of the link between Christianity, social mobility, and economic privilege. By adopting strategic multiplicity—performing Christian norms in public while practicing original traditions at home—local people gained access to otherwise unattainable economic and social goods.

Over the recent past, in India, there have been a lot of debates about religious conversions and many persons ask for strict laws to stop induced or forced conversions. However, Duane's point is that conversions can be a way of creating multiple religious identities and thus act as bridges between religions. Thus to safeguard cultural unity of persons, it may be a better strategy for Indic religions to continue to be welcoming to the converted persons, so that they can acknowledge both their religious identities instead of being forced to give up their original religious identity.

Interfaith Families and Their Children

In his book, Duane also touches on issues related to the interfaith families and children of these families who grow up surrounded by different religious traditions:

Many people who inherit complex religious bonds grow up in an interfaith family. They have a Jewish mother and a Christian father, for example, and grow up attending church and synagogue. Others might have a Christian mother and a Hindu father and refer to their family religion as Chinduism. Still others are raised by parents of two religious traditions, with aunts, uncles, grandparents, and cousins from several other traditions. 

Duane shares different life-stories of persons to explain the complexities in dealing with spiritual fluidity. One of these stories is of Sita, a Caribbean immigrant to Canada, which raises the issue of fitting different religious identities in public and private.

Until Sita started school, she thought every home honored Jesus and Hindu gods at the same time. “As I got older, I became more aware,” she remembers, “kind of realizing: Oh, OK, the Christian part is the part that fits in with society, the part I can mention in school. The Hindu stuff is the stuff I keep to myself ... I remember in school, if people asked, ‘What did you do on the weekend?,’ I felt comfortable saying we went to church. I wouldn’t have felt comfortable saying we went to puja, which is one of the words for prayer gatherings in the Hindu faith. So I just sort of instinctively learned to hide it, because it wasn’t—because if I had said it, they wouldn’t have known what I was talking about.

Conclusions

A few years ago, I had thought of conducting a research with interfaith couples to understand how they reconciled their religious differences, especially in terms of religions of their children. However, after some initial work I had given up that idea as I wanted to do other things. However, I think that if I had done that book, I would have approached this subject very differently from how Duane's has done it. Till some years ago, I had a t-shirt that I had bought in India, which showed symbols of different religions and carried the words, "God is too big to fit in one religion" - to me, those words are a better expression of how I look at multiple religious identities.

When I started reading this book, initially I was a little frustrated by the gap between my own emotional approach to spiritual fluidity compared to the analytical approach adopted by Duane. Before reading this book, I had looked at spiritual fluidity as exclusively a positive value, while I had ignored that for some persons, it can be a challenging path. I am glad that I persisted with the book and I think that I have gained some new insights from it.

I believe that in future with increasing international travels of persons from different countries, the encounters between persons of different religions and interfaith marriages are going to increase exponentially. At the same time, with a decrease in the controlling power of traditional religions, increasing number of persons are going to experiment with and adopt spiritual ideas from different traditions. Such mixed couples and their mixed families can help in building bridges between the people.

I think that Governments should document and valorise these multiple identities. For example, in the national censuses, instead of assuming that persons belong only to one religious traditions, countries should provide specific options for persons with multiple religious identities. Learning about different spiritual beliefs, celebrating all the different religious festivals, can be a way to promote peace and brotherhood in the 21st century. Duane's book provides important reflections and insights on this crucial subject.

*****

Sabarimala and Religious Reforms

An Italian journalist friend had asked for my opinion on the on-going Sabarimala controversy in India. It became an opportunity for me to reflect on the issue of religious reforms. This article is a slightly modified English translation of my Italian article. In it, I explain why I do not agree with the Sabarimala decision of Indian Supreme Court and why I see that decision to be similar to the Hindu fundamentalist discourse which favours a narrow understanding of Hinduism.

Apart from the Sabarimala temple controversy, in this post I also touch on the difficulties of promoting religious reforms in Hinduism and among religious minorities, not just in India but across different countries.

Promoting Religious Reforms

For centuries, social costumes often sanctioned by religious norms had determined the acceptable behaviours in society. The adoption of the Universal Declaration on Human Rights by the United Nations in 1948, gave a new way to measure our social costoms. In many countries, the increasing understanding of human rights violations led to adoption of new laws that undermined the control of the religious authorities on the societies.

I feel that reforming the religions through new laws and court judgements is particularly important in two kinds of situations:

(a) When there is a risk to the physical integrity or the life of persons: For example, the old Indian practice of Sati in which widows were forced to be cremated along with their dead husbands, would be seen as one such situation. In fact, the practice was made a criminal offence in 1829 under the British colonial rule.

Today, the female genital mutilation practiced in some parts of the world and among the Bohra community in India, would be another example of a religiously sanctioned practice that must be stopped because it damages of physical integrity of girls and women.

On the other hand, there is considerable debate about the practice of male circumcision, compulsory among Muslim and Jewish communities according to the religious-social norms. Many persons believe that even this is a violation of human rights of children and should be stopped.

(b) When there is a systematic discrimination or violation of human rights: Discrimination against some group of persons based on their gender or other characteristics such as caste, sexual orientation, religious or ethnic affiliation are examples of systematic violation of human rights and need to be challenged though appropriate laws and court judgements.

Some examples of such discriminations come from countries where orthodox religious groups are the majority and control the decision-making. For example, in different Islamic countries, women, homosexuals and persons belonging to other religions face discriminations. In countries like Uganda, dominance of some orthodox evangelical groups has resulted in laws that foresee jails or even death penalty for homosexuals.

Sabarimala Temple

I am personally not very conversant with the Hindu deities in south India, so I am not familiar with the myths of lord Ayappa to whom Sabarimala temple is dedicated. From what I have read, it seems that there are many Ayappa temples and only the temple in Sabarimala prohibits the entry of women in the fertile age group because here Ayappa is seen as a Brahamchari (celibate).

Thus, I don’t see the Ayappa cult as a systematic exclusion of women, it is only in Sabarimala and is justified by a specific myth. I am not a follower of Ayappa but if his followers see him as a celibate god, it is not up to me or to anyone else to judge their faith.

Hinduism is full of diverse ways of interpreting and practicing the religion, all of which are considered equally valid. They vary from belief in nature worship to a universal formless infinite consciousness (Parmatma) to faith in some or all of millions of gods and goddesses. There is no common sacred book or a supreme authority who can judge and say if one way of Hinduism is better than another. Many fundamentalist Hindu groups see this a weakness, and they want to impose a restricted view of Hinduism, deciding which gods to pray to and how to pray.

I feel that forcing Sabarimala to accept women of child-bearing age and to forego its ideas of a celibate god, is another way to obliterate diversity of Hinduism, a kind of Macdonaldization of religious diversity and pluralism. Though motivated by a different goal, that of promoting gender equality, it violates the basic idea of that temple and forces it in to a narrower definition of Hinduism, just like the ideas of conservative fundamentalists.

Reforming Hinduism in India

After the independence of India in 1947, Government of India has enacted different laws for reforming Hinduism including those related to caste-based discriminations and equality of women. Probably there are still many other aspects of Hinduism that require changes in laws. However, in my opinion, the bigger challenge is how to promote the social transformation in the society, especially in rural areas and smaller towns, so that the laws do not remain aspirational documents but are translated into reality.

The social transformation needed in India, for example for removing caste-based discriminations and promoting equality of women, require decades of patient work in the communities, helping our traditional and religious leaders to change. In comparison, advocacy campaigns and organising protests in the cities for changing the laws is much easier, while making those laws work for everyone is a long and hard struggle. Campaigns and protests also provide more opportunities for image-building and creating star activists, while working in communities to change them is ignored by most and can even be life-threatening.

Reforming other religions in India

Reforming the religious and social costumes of minorities is not easy in any part of the world. The biggest challenge is how to not be manipulated by the racists and fundamentalist groups from other religions. Thus, often persons who are active in promoting reforms among the majority groups, prefer to keep silent or look the other way when similar concerns are raised with regards to the minority groups.

For years, Afro-American feminists have lamented the difficulty of talking about the violence faced by Afro-American women because the progressives and activists are afraid that these debates will be hijacked by white supremacists and right-wing fundamentalists to reinforce negative stereotypes about Afro-American men. In the same way, LGBT Muslims in Europe get very little support from the liberals and activists, who do not wish to strengthen the Islamophobia.

It may be because of similar reasons that gender-based inequalities among the minority religions in India do not get much attention from activists and mainstream media. For example, I have read some progressives writing against the Modi government’s attempts to ban the practice of “triple talaq” among Muslims because they see it as minority-bashing by a nationalist government, though it violates women's rights. In the same way, the story of the Catholic nun who had charged the bishop of Patiala with repeated rapes has received limited attention from the mainstream media and activists in India while a report detailing the widespread sexual abuse of nuns has been written by Tim Sullivan, a foreign correspondent for the Associated Press.

Fortunately, blogs and social media are giving new opportunities for persons from different communities to raise their voices and be heard, even if "official" activists and mainstream medias do not wish to talk about their issues for ideological or political reasons.

Conclusions

I believe that it is fundamental to change and reform all the religious practices which violate the human rights. Making appropriate laws and court judgements should be seen only as a first step in the reformation process since the social changes require decades if not centuries to change. For example, the Sati practice outlawed by the British in 1829 was still occurring, fortunately not very frequently, even after India’s independence. I still remember the story of Roop Kanwar being cremated with her husband in 1987 and that some persons were still defending this practice.

However, preventing human rights violations and promoting equality should not be confused with the promotion of monocultures and loss of the rich cultural diversity of India. In this sense, I do not agree with the Sabarimala verdict of the supreme court of India because I do not see the practice of one temple as a systematic gender-based exclusion of women.

All the images used in this post are from the annual Ambubashi festival at Kamakhaya temple in Guwahati, Assam in India, which celebrates the mensturation of the Goddess, and represents one of the diversities of Hinduism. Only fundamentalists and misguided activists would try to cancel all such diversities of Hinduism in the name of "equal rights".

*****

#sabrimalaverdict #india #religiosdiversitiesindia #diversitiesinhinduism #womeninhinduism #religiousreforms

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