4
	Working with Indigenous Peoples

	Laureen Pierre

One of the greatest challenges of introducing any kind of development programme with indigenous peoples the world over, is how to find a balance between cultural tradition and positive change.  For the Community Based Rehabilitation Programme which commenced three years ago in the Rupununi of Guyana, this challenge is central to the planning and execution of the programme of work which has a focus on disability.
	The Rupununi, also referred to as Region 9 for national administrative purposes, represents the southern area of Guyana.  It has a land area of approximately 30,000 square miles of mountains, savannahs, forests and swampy lowlands intersected by numerous creeks and rivers.  Its residents are mainly Amerindians - a name which refers to the nine indigenous peoples of Guyana.  Three of these peoples - the Wapishana, Macushi and Wai Wai can be found in the Rupununi.  There are also other indigenous peoples as well as Guyanese of other ethnic origins who, over the years, have also begun to live there.  The total population approximates 16,000, of which 7,000 are Wapishana, 6,000 are Macushi and 200 are Wai Wai.  
	Like many of their South American counterparts who live under tropical conditions, the indigenous inhabitants of the Rupununi  continue to centre their lives around subsistence farming, fishing and hunting.  Their living conditions are rudimentary and compared with the rest of the multi-cultural Guyanese society, they are regarded as the most disadvantaged ethnic group.  
The Rupununi is considered to be one of Guyana's most remote areas.  Until recently, a hazardous trail linked the capital city and other more developed settlement areas with the Rupununi.  Access was mainly by an irregularly scheduled and relatively expensive air service.  Consequently very little attention was given to planning and executing tangible social and economic development programmes in the Rupununi.
	It is not surprising, therefore, that the residents of the Rupununi welcome any indication of developmental support.  But more often than not, the relatively harsh living conditions within an environment that is a host for numerous insects, proves to be the first deterring factor to individuals and representatives of government and other agencies who would otherwise wish to make their services available.
	Meanwhile, the Amerindians who live in the sparsely and widely settled communities continue to demonstrate a capacity for enduring suffering and survival.  Their lives are heavily circumscribed by the physical nature of their environment.  For instance they have to adapt their lives to suit a long dry season followed by a rainy season.  The latter lasts from May - September each year and is accompanied by flooded rivers and trails which often means days and weeks of isolation for many villages.  Communication and transportation links between villages and central administration centres are poor and residents generally have limited access to basic health and education services. The Amerindians have retained a deep affinity to the land and their natural environment and this influences significantly their material culture as well as their world view.

Initiating CBR in the Rupununi
In 1992, having promoted CBR in a number of coastal Guyanese communities, the coordinators of the national CBR programme (see Chapter 7) considered expanding the programme to an interior region.  Despite their own awareness of the existing conditions of the Rupununi, they invited more objective opinions from people who were familiar with the Region and they made several visits to the Rupununi to have more first hand view on the matter.  
	I joined the team which included the Director of CBR, Dr. Brian O'Toole and Ms Pamela O'Toole an experienced educator, on the basis that I was an indigenous person and had worked as a teacher in the Rupununi prior to my current job as a researcher on Amerindian Affairs at the University of Guyana.  I felt committed to assisting in what I recognised as a truly exciting programme with untold possibilities.
	We held meetings with educators, health personnel, policy makers and administrators of the region.  We gained the distinct impression that the CBR focus on disability which prevailed on the coast was not a priority for the residents of the Rupununi region.  Similar views were expressed by other residents with whom they spoke.  The essence of the recommendations and suggestions from all quarters was that there was an urgent need to improve the quality of life and the developmental needs of all children of the region.

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The decision to engage in field work to observe and document the needs of the children in the Rupununi proved to be an invaluable exercise and is an essential prerequisite for formulating a suitable development programme.

Making A Start
During initial contacts between the CBR programme and the village leaders of the Region (see Chapter 6), disability seemed not to have been a major issue possibly because the social system and conditions of life were generally rudimentary, comparatively speaking.  It is not surprising to learn that the mute are good farmers, fishermen and cooks and even blind people can go fishing.  With a little assistance from family and friends, people with disabilities seem to play a meaningful role in these simple ways and some even raise their own families.  
	However those with more acute forms of disabilities find themselves isolated and spurned by their families who do not have the support mechanisms to assist in integrating them into the society.
	It is this latter group in particular who have become a focus of interest for the CBR volunteers.  Devising relevant strategies for promoting the awareness of disability within native communities was therefore of prime importance.  This chapter describes how the CBR workers set about this work and identifies the strategies which have proved most successful.

CBR Village Teams
As noted earlier, the CBR programme began in the Rupununi with the Director - Dr. Brian O'Toole - making a series of one-week long field trips to meet the local community leaders and to listen to their concerns (see Chapter 7).  
	A representative group of Rupununi residents was responsible for formulating the idea of the promotion of CBR work through the creation of a team of three for each village.  In the Rupununi there are thirty-three major villages which, for administrative purposes, fall in five sub-districts.  The affairs of each village is run by a Touchau (head chief)  and a village council.  Apart from this body the scope for demonstrating local leadership is limited.  Teachers and Community Health Workers (CHWs) are perhaps among the few who are regarded in this light.  It was at an introductory workshop on child development during October 1992, that a number of CHWs and a few teachers from across the region discussed and endorsed the idea of having a CBR team for each village. These representatives were entrusted with the task of assisting their villages to identify the teacher, the CHW and a villager (who in most instances was a member of a village council), to serve on the CBR team.
	A series of workshops was planned for each sub-district which allowed the CBR teams of each village to meet once a year in order to acquire and share information, ideas and plans and activities.  A regional conference is also planned for each year where the volunteers from across the region meet and review the progress of the programme and share in forward planning.  After almost three years, most of the initial members of this team remain unchanged, team spirit is present and because of the relatively high profile of each member of the team in their respective community, the CBR teams receive much needed respect and support as they proceed with their work.  

Training Workshops
Training workshops were held for the Community Health Workers, school teachers and village leaders who had volunteered to assist the programme.  The focus initially was mainly on early child development and not on disability per se.
	The most important aspect of this CBR initiation process was determining in what ways the CBR materials developed on the coast in the form of photographs, video material and notes and observation could be used to form an essential part of study and reflection by the Rupununi residents themselves. As it turned out it was the volunteers of the Rupununi programme who had a deciding role to play in this matter.  The team began by critically reviewing manuals and video documentaries which has been produced on the Coast. Over the course of a number of months the Rupununi CBR team began to produce teaching materials that were relevant to the culture of the region.
	For the CBR volunteers exposure to information through manuals, videos and group discussions during the workshops proved to naturally stimulate their own perspective on attitudes, beliefs and ways in which one could deal with the issue of disability within their communities.

Traditional Beliefs
One of the interesting and valuable exercises which was used to introduce the subject of disability during the training workshops,  was to have the participants discuss traditional beliefs and superstitions which surround the disabilities that afflict children from birth.  The participants provided anecdotal accounts which answered such questions as why children were born with speech impairments or with problems which did not allow them to use their limbs effectively?
	Some explanations hinged on the wrong diet of pregnant women.  For example, if a pregnant woman ate mutton this might cause a child to be born with a disability.  Some believe that if a pregnant women or the father of the child ate a certain species of deer, the newborn infant might suffer from fits.  Others hold the view that some disabilities are due to pregnant mothers eating at night in unlit rooms.
	They also spoke of morals.  For example if a man engaged in an extra-marital affair, his lover, on becoming envious of the man's spouse, could decide to harm the foetus of the man's wife.  This could cause some deformity of the child when it was born.
	Similarly, the volunteers shared some traditional methods of preventing and treating disabilities.  These included educating women about the kinds of food which they should not eat when they were pregnant and the acts which they or their husbands should not engage in when a woman was pregnant.  For example, when his wife is pregnant, a man should not cut the tongues of nestlings or else the child would be dumb.  Likewise a man is advised not to kill the snake known as 'camudi' (boa constrictor) as this would cause the unborn child to have underdeveloped muscles in the lower limbs.  
	The volunteers also described the form of treatment people with disabilities were subjected to when taken to the local shaman or 'medicine man'.  These included prayerful chants, drinking traditional herbal brews or applying them externally, and smoking or sweating the patient.  Families are often advised to use incense in their homes to guard against 'evil spirits'.
	Discussions of this nature were helpful since they allowed participants to reflect on the perceptions of their people.  From this, they began to question some of these established beliefs and practices.  The resource persons leading the workshops were sensitive to, and respectful of, the local people's culture.  They did not seek to impose new views or give trite medical and scientific explanations.  Rather, through their own discourses and practical sessions they presented information in a manner which allowed the volunteers to more deeply investigate the knowledge which their people had on the subject as well as the new perceptions which were being shared with them.
	While such discussions were usually conducted within the context of early child development, the general effect was that the volunteers recognised how important a role they were already playing, or could play, in guiding their communities through a process of re-examining traditional values and customs.  This meant that if any transformation in attitudes towards disabilities was to occur in the several communities throughout the Region, a strong education campaign had to be done on this topic.  
	This was one of the great challenges which the CBR volunteers realised that they had to meet.  Two approaches were adopted.  Firstly, through the opportunities provided to the volunteers in a day-to-day basis as they went about their usual work.  Secondly by having a series of special events.

Education through Daily Contact
In many ways the Community Health Workers and the teachers were ready to use their own professions as a means of informing  communities about new perspectives on disabilities.  They incorporated this task into their everyday activities on a small scale.  The Health Workers for instance, began to use their ante-natal and post-natal clinics to educate women.  Those women who had children with disabilities were encouraged to bring them to clinics to receive immunization.  They were told that these children had special needs; that they required greater care and that through the CBR programme, families could learn how to better cope with these children.  
	Teachers also joined in encouraging parents to understand that in many cases children who had special needs were capable of learning.  Parents could assist by making special toys and games to help such children to learn at home and later to have them join in the normal activities of school life.

Special Events
A number of different events were organised by the CBR volunteers in the Region, each one drawing on the local culture and promoting community participation.

Exhibitions:  During the first year of the CBR programme, CBR volunteers promoted an Art and Toy Making exhibition for all school children in the Region.  The children were asked to prepare posters on the subject of disabilities or to make toys for disabled persons.  The competition categories included children from nursery to school leaving levels so that almost every school child had an opportunity to give creative expression to their thoughts.  
	Hundreds of art pieces were entered for a regional competition as were many craft and toy items. These were made of local material such as seeds and beads, woods and gums.  
	The top winning entries were sent to a national CBR competition in Georgetown, the capital city.  Trophies and prizes were sent to the winners and they have been regarded as prized possessions.

Performances:  Dramatic presentations at cultural community events have made another great impact at all levels in the communities.  CBR volunteers are generally willing to utilise their skills and talents to generate skits, songs, poems, limericks, dances and short plays which highlight some important message on disability. These are done either in English, Wapishana, Macushi or Wai Wai and sometimes even in Portuguese given the Region's proximity to Brazil.  These performances are often simple, almost spontaneous and humorous.  More than this, they reflect very much life in the Rupununi; people's attitudes and how transformation can occur.  When children, youth and adults attend these cultural presentations they enjoy the drama while learning the message.  This mode of communication has added greatly to community events.

Puppet Shows: One novel addition to cultural presentations has been the art of puppetry.  Making and using puppets has been part of the training workshops for volunteers.  Children and adults are fascinated by simple puppet presentations and a cultural show which includes puppetry is now a major success.  Again CBR volunteers take advantage of these opportunities to focus on disability.

Video Productions: Capturing the real life situation of disabled persons on video has also been a major contribution to the education campaign on disability in the Rupununi.  Although most of the video programmes have been produced as learning aids for volunteers at the training workshops, these have also been shown to many of the communities at large.  Since these videos feature disabled persons of the Rupununi as well as persons from other parts of Guyana, they are viewed with great interest as they project positive images of children and adults with disabilities.

Story Book: A more recent addition to this process of educating the community on disability has been a story book written by a teacher of the Rupununi and one of the regional co-ordinators of the CBR Rupununi Programme.   This collection of stories includes many on disabled persons and the stories have been written in English, Macushi and Wapishana.  Experiences have shown that the books can be used at all levels in schools.  Questions are provided at the end of each story as a test of the reader's comprehension but also to stimulate their thinking about disability and its implications for community living.

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Training Workshops: Apart from these community strategies, the volunteers themselves have gained much support from the series of five day, CBR workshops which have now been held in the five sub-regions of the Rupununi.  These exposed participants to information through manuals and videos.  The group discussions during the workshops proved to naturally stimulate their own perspective on attitudes and beliefs.  Also this was done in ways which the volunteers could use to deal with the issue of disability within their communities.

Survey: During 1993 - 1994 almost every village in the entire Rupununi Region was surveyed to identify persons with disabilities.  Practical demonstrations in the training workshops and specially written booklets with guidelines, enabled them to begin to assess persons with simple forms of disabilities.  Each team made a map of their village, visited each household and school and carried out simple checks to ascertain the number of people with different disabilities in each village.  Altogether the result showed that 1.7% of the Rupununi population had a disability.
	The data generated from this survey is currently being used by volunteers and the regional coordinators (VSO volunteers) to assist them in measuring their own progress as they work with disabled persons.  

Outcomes
What was especially noteworthy about the work of CBR volunteers during the first year of the programme is that they themselves had gained a much wider understanding about early child development than they had on disability.  Yet their reports at the end of that year indicated that they regarded dealing with disability as a priority within their communities.  A few communities were outstanding in this respect and were able to mobilise greater community awareness on the subject than others.  The main message which they all seemed to have passed on to their communities was that it was time to begin to recognise that people with disabilities could be assisted to have better lives, to be better appreciated as a member of the community and that many had talents and skills which they could contribute to their communities.
	In some communities progress is manifesting itself by advancements in integrating children with disabilities into schools.  One major success story is that of a young blind child who is musically talented and who has entered into regular school life through the work of the CBR team in his village.  The volunteers were able to acquire a banjo for him and he now entertains in school and for community events.  Similar efforts are also being made by other village teams and the integration of children into schools is a current major goal for the CBR teams.

New Perspectives on Development
Although these attempts at educating communities about disability were a humble beginning, they have proved to be a sound and practical way to begin to look at the implications of dealing with disability as a development issue within the Rupununi.  As the volunteers themselves were quick to point out, Rupununi residents often demonstrated a tendency to request donations from organisations which had contact with their area.  These appeals arose because of their largely impoverished situation and the lack of any amenities.  
	In fact it was not very long after the CBR programme started that the visiting staff received requests to make available such items as wheel chairs and spectacles.  Ironically, many of these requests pertained directly to adults and not to children who were the primary focus of the CBR programme.
	How was the CBR programme going to deal realistically with requests and expectations and not allow an already deprived population to feel further rejection?  This was the question posed to the programme coordinators, the resource persons and the volunteers.
	The response was couched in a rather unique dialogue which has started to bring CBR closer to communities at a grassroots level.  The dialogue was on social development and what was meant by empowerment of people.  Volunteers themselves explored this matter in a simple manner. During the workshops they spent time re-examining the pattern of development within their communities.  To begin with they discovered that in their respective languages many words could be used to convey the concept of development.  They recognised that development did not necessarily mean infrastructural features but that it also had a deeper significance which could impact on their cultural identity.   They also agreed that everyone in the community - including persons with disabilities - should have an opportunity to share and benefit from development.
	Over and above all of this, and in relation to the subject of disability, the CBR volunteers were able to appreciate that villages can do simple things to improve the life of persons with disabilities and that this could be an indicator of the level of development within a community.  It was not necessary for external organisations to be development donors.  
	CBR volunteers began to impress these concepts on their communities.  While on the one hand CBR has begun to be a channel and support for social development projects within a few communities in the Rupununi, on the other hand the kinds of specific requests from persons with impairments and disabilities have decreased.  Simultaneously, there is a wave of genuine and healthier community response to assisting disabled persons.

Future Challenges for the CBR Programme
Now that the CBR programme has started to make a direct impact on the lives of Rupununi residents, including those persons with disabilities, it is likely that the future holds many exciting and perhaps difficult challenges.  Individuals, institutions and communities have been gradually awakening to new perspectives on human life and are looking for more explanations and solutions.
	For the CBR programme this certainly means keeping up the momentum which has been started; the strengthening of existing partnerships which have been forged and assisting volunteers to seek more opportunities for educating themselves on this subject.
	Already every year a small number of CBR volunteers from the Region join other CBR volunteers from across the country in intensive workshops which are geared to enhance their capacity to serve as trainers.  At the moment many of the Rupununi volunteers have been selected to pursue another training exercise which would empower them to serve as resource persons or trainers in other Amerindian communities outside of the Rupununi.  In this way the values and ethos of the CBR programme can be spread more widely throughout the country at relatively low cost and with little reliance on personnel from outside the country.
	Working with indigenous peoples is generally a rewarding experience but the approach adopted to the issue of disability in the Rupununi Region with indigenous peoples stands out as an excellent  paradigm for others to follow.  Some of the points highlighted in this chapter illustrate the tremendous response of volunteers and communities to relatively minor and 'low-key'  initiatives; yet these attempts were ones which focused on disability as a real human concern.  
	This emerging model has attracted much interest outside of Guyana, especially through the many videos which illustrate the work of CBR in the Rupununi.  Nevertheless, the basic lesson remains.  Each society has to restructure for itself, its beliefs, perceptions and responses to disability.  In so doing, it will rediscover the power to channel its own further development.  

Acknowledgements

	The Guyana CBR Programme is funded by the European Community and AIFO.  Photographs by Brian O'Toole.  

Laureen Pierre herself an Amerindian, works as a researcher in the Amerindian Affairs Unit in the University of Guyana.  She holds a Masters degree in history.  Laureen has worked as a consultant for a number of international organisations and specialises in development issues.  She is a founding member of VARQA, one of the major development foundations working in Guyana in the areas of primary health care, basic education and literacy.

Contact Address
	Amerindian Research Unit,
	University of Guyana,
	Turkeyen,
	Greater Georgetown
	Guyana