Challenges of Emancipatory Research

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

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

EDR in Developed and Developing Countries

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

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

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

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

Freirian Model of EDR

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

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

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

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

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

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

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

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

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

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

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

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

Challenges of EDR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Conclusions

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

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

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

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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 

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

Planning Emancipatory Research

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

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

Selecting the Research Themes

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

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

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

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

Prerequisites for starting Emancipatory Research

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

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

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

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

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

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

Identifying Researchers

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

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

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

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

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

Training the Researchers

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

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

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

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

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

Support Staff for the Emancipatory Research

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

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

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

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

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

To Conclude

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

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

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

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#planningemancipatoryresearch #disabilityresearch #emancipatoryresearch #edr 

Persons Exiled in Nagashima Island

Some of the most beautiful places in the world have been used as prisons. Nagashima in the south-west Japan was one such island which became a sanatorium-prison in the early part of 20th century. Its prisoners had not committed any crime, they just had an infection called leprosy.

During my recent visit to Japan, I had the opportunity to visit Nagashima and to learn about its history. This post is about that visit.

Nagashima

Nagashima (Naga = long and Shima = island) in Setouchi (Okayama) is a 9 km long beautiful island. After years of being seen as a place of fear, it is now changing its image.

The sea all around Nagashima is famous for its oyster farming. It is now connected to the mainland by a new bridge - the Oohashi bridge. It is surrounded by farming and fishing communities.

Nagashima As A Place of Exile

In 1930, the Japanese Government decided to create a leprosy sanatorium (Nagashima Aiseien) on Nagashima island.

A few years later, in 1934 the floods destroyed Sotojima Hoyo-in leprosarium near Osaka, killing 173 persons. Before the floods they had tried to shift to a safer place, but local residents did not want them. 416 survivors of the floods wanted to go to a new centre in Osaka but local persons did not want them, so finally they were relocated to the opposite side of Nagashima island to create a second leprosy sanatorium called Oku Komyoen.

Many people who lived on Nagashima changed their names so as to not cause problems for their families.

Doctors thought that by isolating the patients on an island they will stop the transmission of the disease. Over the next few years, the health authorities made very stringent laws limiting the lives and dignity of persons living on Nagashima island. For example, the women were sterilized and forced to abort.

Ancient treatment for leprosy was with Chaulmogra oil. The first modern treatment of leprosy with a Sulphone medicine (Dapsone) started after the Second World War. In the 1970s, more medicines for treating leprosy were discovered and slowly countries started treating leprosy like any other disease.

In 1996 the restrictive laws regarding leprosy sanatoriums in Japan were abolished and the leprosy affected persons of Nagashima were finally free. Over the years, thousands of persons affected with leprosy lived as prisoners in this island. Today in the two settlements there are still residents (about 400 persons), most of them very old.

Visiting Nagashima

A couple of weeks ago I visited Nagashima island during a meeting organised by Sasakawa Memorial Health Foundation (SMHF) on the conservation of history of leprosy. During this visit we were accompanied by persons who had lived their lives in the sanatorium. This visit was an opportunity to see and understand their lives on Nagashima.

The image below shows Mr. Yamamoto, who had lived in Nagashima for around 70 years, ever since he was brought here as a young boy. He was our guide for this visit. Together with him is Ms. Kanae Hirano, our translator from Japanese to English.

I want to mention a few things which made a strong emotional impact on me during this visit.

Beautiful Panoramas

As we went up and down the hills of Nagashima, it was impossible not to be entranced by the beautiful panoramas of the islands and the sea.

The image below shows Tekake-Jima, also known as Benten island, which is connected to Nagashima during low tide and has the Nagashima shrine at its top.

Nagashima Museums

Nagashima has two museums - one is located in the old main office building at Aiseien. It is a beautiful building covered with green creepers.

The other museum is a new building in Oku Komyoen. The museums show artifacts, equipment, maps, medicines, etc. from the old days. For example, Nagashima had its own currency, so that if persons managed to escape they would not have any money to use on the mainland.

The next image shows part of a miniature sculpture of Nagashima with the isthmus of land connecting the old main office building to the area where the staff lived. In 1988, a canal was opened in this part of the island to facilitate the visits of the boats of the oyster farmers, who otherwise needed to go all around the island to reach their oyster platforms.

Charnel Houses

Both Aiseien and Komyoen have charnel houses for keeping the remains of people who died on Nagashima and whose remains were never claimed by their families. The image below shows the Charnel house of Aiseien.

Around the Charnel houses are different other memorials and shrines. The image below presents a shrine next to the Charnel house in Komyoen.

A crematorium was built in Nagashima, mid-way between Aiseien and Komyoen. This site also has a charnel house where remains of other residents are placed. It also includes a memorial to the children and fetuses of women living in Nagashima who were forced to abort (this policy was stopped only in 1954).

In 2002, in a meeting organised by IDEA and held in Seneca Falls in USA, I remember listening to very painful testimonies of some Japanese women who had been forced to abort in the leprosariums. Visiting this memorial brought back the memories of that visit and those testimonies.

Jail of Nagashima

Doctors managing Nagashima had complete powers over the residents including the power to punish and put them in jail. It was operational from 1939 to 1953. Below the hill, the warden of the jail had his paddy fields. Looking at the words scribbled by inmates of the jail on its walls was very moving.

Admissions ward

Persons arriving in Aiseien were taken to this building where all their belongings were checked and prohibited things were confiscated. Their children were taken away. Small children brought there with their parents were sent to schools both on Nagashima as well outside (where they were not well received).

They were given a disinfectant bath with cresol.

This part of the visit made me think of the Nazi concentration camps that I had read. Such places still continue to be used in countries, ostensibly for health-related reasons, for example with mentally ill persons and with immigrants.

Men and women living in Nagashima, if they got married, the men were sterilized but these operations were not always successful. Thus, if any women became pregnant, they were forced to abort. It was the Eugenic Protection Act enacted in 1948 that 'allowed' the parents with mental diseases and leprosy to have abortion legally. This act was amended in 1996, and it was only then that having or having had leprosy or mental diseases could be a condition to have an abortion.

Arrival Jetty

Aiseien had two separate jetties, one near the old main office building, which was reserved for doctors and other staff. The other jetty at the back, closer to the admissions ward was reserved for the patients. Most families accompanying persons affected with leprosy were not allowed to get down and had to say goodbye there.

Some persons arriving in Nagashima knew that they will never see their families again and they will not have an opportunity to leave the island. Many persons, especially the young ones, arriving in Nagashima did not know they were there for life. Many were persuaded to come because they were promised free medication and free lodging, and after cure, going home. They only knew that they were there for good when they got there, asked to change their name, and signed the autopsy agreement.

Looking at the old jetty with its broken down stones, and thinking of the desperation of those persons was one of the most touching moments during this visit.

Conclusions

Nagashima gave an impression of detached, clinical efficiency of dealing with people who had leprosy. It was a closed world with its own houses, schools, orchestra, sports groups, associations, jail and crematorium.

In 1998, some residents of Japanese leprosy sanatoriums went to the district courts to claim that segregating persons on the island was non-constitutional. Not all residents were happy with these law suits and people who fought for this had to face hostilities. The courts agreed with their plea and the residents were awarded a compensation and the Prime Minister of Japan apologised to them on behalf of the nation.

Leprosy had been in Japan for many centuries. First records of the disease are from 8th century. People affected with the disease had faced prejudices and stigma and were forced to live in leprosy villages. However, during all those centuries, the harsh measures adopted in 1930 such as complete isolation in an island, lack of contact with families, forced abortions, etc. had not happened. Why did they happen in the 20th century?

Visiting Nagashima was an opportunity to reflect on the use of medical systems to take away the dignity of people and even to torture them. It has happened in other countries and it still happens in many parts of the world.

Let me conclude with a question for the readers - what is the use of keeping alive the memory of places like Nagashima Aiseien and Komyoen? Can our young generations learn anything from such places?

In spite of the pain and suffering that are easy to imagine when one visits a place like Nagashima, my memories of this visit are also about the sheer beauty of Nagashima and the cheerfulness of the former residents and doctors, who welcomed us, showed us around and shared its history with us.

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