THE VECINOS PROJECT : DEMONSTRATING MUTUAL BENEFIT IN REHABILITATION PRACTICE BETWEEN THE UNITED STATES AND MEXICO
ABSTRACT
The Vecinos y Rehabilitation project was borne out of the mutual interests between rehabilitation researchers in the United States and grassroots leaders with disabilities in Oaxaca, Mexico. The results of the Vecinos y Rehabilitation project have led to mutual benefits for the United States and Mexico that extend beyond the participants of this small study. To Mexico, the United States offered an example of successful rehabilitation research, activism, and independent living. To the United States, Mexico offered a work philosophy that is fresh and innovative. This paper discusses the successes of the Vecinos y Rehabilitation project, the mutual interests of the rehabilitation researchers in the United States and grassroots leaders with disabilities in Oaxaca, and the mutual benefits for the United States and Mexico.
INTRODUCTION
Research and training at the American Indian Rehabilitation Research and Training Centre (AIRRTC) at Northern Arizona University in Flagstaff are organised around four programme Core Areas. Core Area I is aimed at identifying and facilitating effective and culturally appropriate rehabilitation services for American Indians with disabilities. Two National Institute on Disability and Rehabilitation Research (NIDRR) priorities addressed by Core Area I research and training activities are to develop, demonstrate, and evaluate culturally relevant vocational rehabilitation techniques for use in the development of effective services to American Indians; and to develop models to improve rehabilitation and independent living services for American Indians with disabilities. Two AIRRTC research projects, 'Vecinos y Rehabilitation and Vecinos y Rehabilitation: Phase II', have allowed AIRRTC researchers to address these NIDRR priorities on an international level. At a time when economic ties between the United States and Mexico are further developing, the authors believe that access to health care and human services as well as the needs of the indigenous people with disabilities, are areas in which these two countries can also work more closely together.
Through working in collaboration with staff from 'Acceso Libre' [Free Access] and the 'Asociacion de Discapacitados de la Mixteca' [Association of Persons with Disabilities in the Mixteca], which are consumer-initiated and consumer-driven grassroots disability organisations based in Oaxaca, Mexico, AIRRTC researchers have been able to obtain direct input to the culturally relevant services needed by indigenous populations in Oaxaca. On September 26, 1994, the AIRRTC was awarded its first supplemental grant to conduct research in the state of Oaxaca, Mexico (1). One year later, with the successful completion of the initial research effort, the AIRRTC was awarded a second supplemental grant to conduct research in remote and rural areas of the Mixteca region of Oaxaca (2). Both of these projects were designed to establish the feasibility of conducting major research and training projects involving indigenous people with disabilities in Mexico; and to initiate programmes of information exchange in Mexico involving experts in the field of rehabilitation and native peoples.
Vecinos Y Rehabilitation: Phase I
The co-ordinators of 'Acceso Libre' served as the on-site research coordinators for the initial research project and were based in Oaxaca City (1). Both of them were of Zapotec heritage and had long been grassroots, consumer leaders of people with disabilities. Their knowledge of the indigenous cultures of Oaxaca was essential to the success of the project, particularly as regards the development of culturally sensitive research instrumentation and procedures, and the culturally appropriate interpretation of the data..
Participatory Research Processes
As a first step in the project, the principal investigator and the on-site research co-ordinators met with key government officials, community service representatives and indigenous people with disabilities in order to form a Project Advisory Committee (PAC). The role of the PAC was to assist the researchers in finalising the research design. Recommendations from the PAC included methods for contacting participants or subjects, as well as suggestions for the survey instrument that was to be developed. The final survey instrument included questions regarding education level, type of disability, employment status, and the needs of the participants. Both quantitative and qualitative data were collected by people with disabilities who either worked for or volunteered with 'Acceso Libre'.
Results
A total of 232 individuals with disabilities were surveyed in three different geographic regions of Oaxaca; specifically, the capital city of Oaxaca, the mountains around Miahuatlan, and the coast, Puerto Escondido. Sixty nine percent (161) of the respondents lived in the capital, with 20% (46) living in the mountains and 11% (25) living on the coast. Analyses from both quantitative and qualitative data indicated that there was a great need for education, rehabilitation, and employment. Of concern was the lack of education among adult respondents with disabilities, as the majority reported that they either had no education, or not more than a grade school or primary education. Given this finding, however, it is not surprising that the majority of those persons with disabilities who were unemployed were also those with no education. Perhaps most stunning was the finding that among the respondents who were school-age children with disabilities, the majority were not attending school.
Rehabilitation as a profession is unknown in Mexico; vocational rehabilitation services for adults do not exist. Thus any reference to 'rehabilitation' most often means medical rehabilitation or physical therapy. As regards access to rehabilitation services, assistance appears to be more easily available in urban areas than in rural areas in Mexico, as in the United States. For example, while the majority of respondents in the urban capital of Oaxaca reported receiving some form of rehabilitation or financial assistance, only 13% of the respondents from the mountains surrounding the urban capital received such assistance. As the comments of respondents indicated, there is great interest among people with disabilities, and among their family members, for the development of community education programmes, family education programmes, and vocational rehabilitation. In terms of employment, while the majority of adult respondents were employed, they included seasonal workers, sustenance farmers (campesinos), and part-time workers. Importantly, while the majority of adult respondents were employed, in actuality, this majority referred only to men with disabilities. Just over a third of adult women with disabilities were employed, compared to over 50% of the men.
Vecinos y Rehabilitation: Phase II
The Mixteca region in the western part of the state of Oaxaca, was selected as the target site for the second phase of the Vecinos y Rehabilitation project (2) due to the large number of indigenous people who lived in its remote, rural communities and the lack of formal documentation regarding the needs of people with disabilities in the Mixteca region. The city of Huajuapan de Leon served as the headquarters for the project for two reasons. Firstly, it has a central location within the Mixteca region and secondly, 'Acceso Libre' had established contacts in the area. Huajuapan de Leon was the administrative base for the 'Asociacion de Discapacitados de la Mixteca'. The project principal investigator first visited Huajuapan de Leon in October 1995 in order to meet with Ovaldo Galicia Garcia, President of the 'Asociacion de Discapacitados de la Mixteca' (ADM). This relationship was further solidified in December, 1995,with the members of ADM attending a conference in Oaxaca City.
Research Processes
While participatory research processes similar to those followed in the first phase of the Vecinos research were followed in the second phase, the survey instrument that was used for the second phase was based on the instrument that had been developed as a part of the initial research effort. From his experience of the Phase I data, one of the authors who is a research specialist, made suggestions regarding improvements to the survey instrument that would lead to more manageable data. They were presented to members of ADM and with further corrections and changes were tailored specifically to the Mixteca region. There were 140 indigenous people with disabilities from rural communities in the Mixteca, as well as from the town of Huajuapan de Leon, who responded to the survey.
The Work of Acceso Libre and El Centro in Oaxaca
A grassroots organisation, 'Acceso Libre' was founded in 1992 by persons with disabilities in order to offer community support programmes for persons with disabilities, to help them achieve a sense of self-sufficiency and the ability to participate in community affairs as people without disabilities do, and to exercise their rights and obligations as citizens. From its founding, until April 1996, 'Acceso Libre' was operated with minimal funding from the Oaxacan municipal government. Thus the primary mission of 'Acceso Libre' has been firstly, to enable persons with disabilities to gain access, that is, to move freely everywhere without any physical or social barriers; secondly, to conduct training that offers capacity-building classes, with technical training being adapted to the physical conditions of the person with disability so that she can complete her tasks efficiently and have the opportunity to choose her employment; and thirdly to disseminate information and create awareness regarding disability, so that persons with disabilities would be integrated into all productive sectors of the community, and granted the same benefits as the general population.
The staff of 'Acceso Libre' has offered the following services: (a) advice to individuals on how to make their own homes more accessible, (b) assistance with funding requests for free medical care and for special needs (e.g., canes, wheelchairs, crutches, etc.), (c) grade school and junior high school education programmes for adults who were not allowed access to a primary level of education (d) information and training for the families of persons with disabilities, and (e) peer counselling. Some of the positive results from the 'Acceso Libre' programme are the following. Two hundred and sixty nine ramps were built to help persons with disabilities to have access to the public streets within the historic zone of Oaxaca City. Six training courses were offered for young persons with disabilities, resulting in 22 persons gaining employment. Ramps were built at administrative centres, commercial areas, as well as cultural and recreation centres in Oaxaca City, allowing persons with disabilities to participate in the daily activities of the community. Ramps were built in the CONALEP Educational Centre in Puerto Escondido, Oaxaca. The programme promoted a new law through municipal authority in order to provide ramps in principal streets for persons with disabilities. The Acceso Libre programme was promoted in the schools, resulting in 35 adults with disabilities participating in an adult education programme. The 'Frente Unido de Discapacitados de Oaxaca' (United Front of People with Disabilities of Oaxaca) was established by 'Acceso Libre' in March 1993 through support of the Department of Social Development for Oaxaca City. The 'Frente Unido' was constituted by different organisations of people with disabilities in Oaxaca. The objectives of the Frente Unido were firstly, that every organisation work for the betterment of persons with disabilities in Oaxaca and help them to have an active role in the community; secondly, to avoid utilising persons without disabilities as their representatives in order to protect resources designated for the community of persons with disabilities; thirdly, to promote employment of persons with disabilities; and lastly, to ensure availability of integrated public education to persons with disabilities.
In addition, a citizen's committee, 'Comite de Salud del Frente Unido de Discapacitados de Oaxaca' [Health Committee of the United Front of Persons with Disabilities of Oaxaca] was organised for the advocacy and support of persons with disabilities. Several meetings have been held to share experiences among people with disabilities in various states of Mexico as well as in the United States.
New Directions and the Work of El Centro
The situation for people with disabilities has been improved in Oaxaca's capital, Oaxaca City, because of the 'Acceso Libre' programme. However, there was a need to establish a permanent base from which to continue the struggle to eliminate attitudes such as the belief that individuals who have acquired a disability are dependent, fearful people who avoid responsibility and manipulate others using their disability. Additionally, 'Acceso Libre' needed to reach out to rural communities. Thus, in 1995, 'Acceso Libre', in collaboration with Northern Arizona University, proposed to create a series of programmes which would provide equality of opportunity and responsibility for persons with disabilities, making the indigenous regions in the interior of the state a priority. In these places people with physical disabilities have no awareness of what integrated rehabilitation may offer them. Funded in April 1996 by the W. K. Kellogg Foundation, 'El Centro de Rehabilitacion Integral 'Gabriela Garcia Judrez' [Integrated Rehabilitation Centre (CRI)] proposed to focus on resolving six problems. They are the lack of physical rehabilitation services in rural areas; inadequate education or job training and the low economic status of persons with disabilities that results from this situation; the limited opportunities that the community offers persons with disabilities by setting requirements that are difficult to meet; the lack of information and technical support related to the recovery of persons with disabilities; the constant increase in the incidence of persons with disabilities as a result of accidents; and the attitude of institutions of higher education treating the problems associated with disability as exclusively health problems rather than one of a lack of societal development and awareness.
Thus, the specific objectives of 'El Centro' include peer counselling as regards physical rehabilitation needs, vocational rehabilitation, development of employment opportunities, family education, disability prevention, and the development of professionals in the rehabilitation field. The creation of 'El Centro' is a testament to the strength of volunteerism and grassroots organisations, of collaboration between grassroots organisations and universities, and the strength of action research grounded in the participation of affected community members.
Women with Disabilities in Oaxaca
As demonstrated in the needs assessment conducted by 'Acceso Libre' staff and Northern Arizona University, while more than half of the men with disabilities in the survey were working, only one-third of the women with disabilities had work. However, in general, even the women who received pay for their work were unable to live modestly or comfortably. A women's co-operative, initially named 'Asociacion de Mujeres Discapacitadas de Oaxaca' [Association for Women with Disabilities of Oaxaca], and subsequently changed to 'Asociacion de Mujeres, Gabriela Garcia Juarez' [Association of Women, Gabriela Garcia Judrez], demonstrates the philosophical tenets of the disability movement in the state of Oaxaca. A work programme that teaches women with disabilities textile painting, embroidery, and administrative skills along with the discipline of a marketable trade, the importance of mutual assistance and co-operation, providing the ineffable opportunity to hope for a better, self-sustaining future is part of this organisation's activities. This relatively new co-operative is slowly becoming known to women from around the state of Oaxaca. They come to the city seeking work, and through the co-operative, receive not only shelter, but also warmth and acceptance from their sisters in disabilities. The now deceased founder of the co-operative, visualised not only recruiting women with disabilities to the co-operative in Oaxaca, but also taking the co-operative to the women, especially into the remote rural areas. Starting in 1996, through the CRI, the co-operative reached out to rural areas and brought the artisan work of rural women with disabilities to Oaxaca city to sell.
One of the primary goals of the women's co-operative is to teach women marketable skills while finding them a place in the adult education classroom so that they can learn to read and write. In this manner, women can be earning money while they master the equivalent of an elementary school education. Others who already have attended elementary school may take computer or cooking classes, in order to prepare them for other job possibilities. In support of the co-operative's efforts, three of the women from Oaxaca were able to travel to Albuquerque, New Mexico in June 1996 in order to observe how co-operatives and other programmes for people with disabilities were organised and managed and also to initiate a U. S. marketing base for their products. This trip, sponsored by the 'New Mexico Governor's Committee for the Concerns of the Handicapped', was yet another example of 'vecinos' working together.
Conclusions and the Reality of Mutual Benefit
Since the AIRRTC's Vecinos Project began its work in Oaxaca, 'Acceso Libre' has been incorporated as a non-profit organisation and has received a grant from the W. K. Kellogg Foundation that provides for the vocational rehabilitation of people with disabilities in and around Oaxaca City. The creation of 'El Centro de Rehabilitacion Integral' serves as an example of the AIRRTC's commitment to the action phase of participatory action research, as well as its commitment reach out to indigenous people with disabilities. The Vecinos y Rehabilitation project was borne out of the mutual interests of rehabilitation researchers in the United States and grassroots leaders with disabilities in Oaxaca. The results of the Vecinos project have led to mutual benefits for the United States and Mexico, benefits that extend far beyond the Oaxacan participants. For Mexico, the United States offered an example of successful rehabilitation research, activism, and independent living. For the United States, Mexico offered a reminder that the family is a fundamental and essential centre of community life within indigenous cultures, as well as a refreshing, energetic, and hopeful philosophy of life. Of the three areas of rehabilitation expertise that the United States was able to share with Mexico, rehabilitation research, activism, and independent living, the Vecinos project demonstrated the successes which can be born of co-operative research efforts between university-based rehabilitation researchers and grassroots leaders with disabilities. Each phase of the research project was based on a model of participatory research that involves the use of professional expertise to support the goals and efforts of a particular community-based group. Importantly, participatory action research also recognises the need for persons being studied to participate in the design, conduct, dissemination, and action plans of the research that affects them. As a result of the use of participatory action research in all phases of the Vecinos y Rehabilitation project, indigenous people with disabilities in Oaxaca have learned to conduct needs assessments in their communities, analyse and interpret the data, and effectively disseminate the results. In Oaxaca City, the research experience was instrumental in helping 'Acceso Libre' incorporate as a non-profit organisation and receive funding for 'El Centro'. In Huajuapan de Leon, the Mixteca region data were helpful to the Asociacion de Discapacitados de la Mixteca in convincing the city to donate a tract of land where a rehabilitation centre will be constructed. Direct examples of activism is another area of expertise that the United States has been able to offer to Mexico. One of the primary objectives of the Vecinos y Rehabilitation projects has been to create an interchange of ideas between the two countries. To accomplish this goal, the AIRRTC has helped to find and create opportunities for people with disabilities in Mexico to travel to the United States and vice versa. As a result of these travel opportunities, the grassroots leaders with disabilities from Oaxaca have been in contact with activists from the United States within the community of people with disabilities. Oaxacans have been able to witness activists with disabilities from the United States assert their civil rights and expect to be treated with dignity. Finally, as part of the effort to create an interchange of expertise between the two countries, Oaxacan grassroots leaders with disabilities, who expressed an interest to learn more about the administration and management of independent living centres, have travelled to Los Angeles, California; Tucson, Arizona; Phoenix, Arizona; Flagstaff, Arizona; and Albuquerque, New Mexico. On these various trips, they have been able to meet with vocational rehabilitation professionals, rehabilitation hospital administrators and professional staff, rehabilitation researchers, independent living counsellors and advocates, Native American activists with disabilities, and many other people who work in the field of rehabilitation and education. These leaders have not only collected information on U. S. models of independent living. but have also shared the grassroots successes of Oaxacan consumers with U. S. rehabilitation counsellor professionals.
As a first element in a community's social structure, the family in Oaxaca remains the central focus point in life. Considering the family, working with the family, and providing for the family are 'givens' during rehabilitation planning and outreach. In the United States, family advocates assert that the family should be considered. In Oaxaca, our Mexican counterparts have no option but to include the family. Leaving the commitment to indigenous values, such as recognition of the fundamental role of the family in society, has enabled participants in the Vecinos project to design research and to develop action plans that are culturally relevant in Oaxaca and models of appropriate intervention with indigenous populations in the United States.
Underlying the successes of the Vecinos project, as well as the work that has independently been accomplished by 'Acceso Libre', is a Oaxacan philosophy of life and work reflected in the phrase, 'Nada es impossible' (Nothing is impossible). It is generally recognised that the Mexican people do not have access to public financial resources or to the relative economic stability that is enjoyed in the United States. This has been especially true following the recent financial crisis in Mexico. However, despite their lack of access to strong and systematic fiscal support, the grassroots leaders with disabilities in Oaxaca have organised people with disabilities, created small businesses where people with disabilities can work, convinced government officials to build ramps and install curb cuts, obtained land for a rehabilitation centre, conducted needs assessments among people with disabilities, and secured funding from a private foundation in order to more effectively serve people with disabilities.
In the United States, rather than believe that 'nothing is impossible', people have come to believe that 'nothing is possible', without a lot of money, particularly without government funding. For this reason, the community of people with disabilities in Oaxaca, which has been successful under the most difficult economic and living conditions, can serve as a role model to Americans in the United States, with or without disabilities. The Vecinos project has reminded us that enthusiasm, energy, willingness to work, positive thinking, creativity, and desire, all contribute to successful outcomes, apart from government funding alone.
The philosophy of 'nada es impossible' is also reflected in the tradition of 'tequio'. 'Tequio' refers to each member of a community volunteering his efforts and resources to a community effort, especially important when there is little money to exchange for labour. One grassroots leader in Oaxaca explains the philosophy behind 'tequio' as: 'Each individual who is educated in the [majority] community ... always says, my car, my house, my office, my family. In contrast, the pattern in the Native communities is, our town, our fiesta, our work, our ....' . Thus, much can be accomplished when the individual begins to think of contributing time and labour freely as a community obligation. Vecinos project has demonstrated that there is much to be gained from two neighbours working together to address common issues related to disability. The quality of the future depends on common interest and commitment to continue working together. Both governmental as well as non-governmental foundations and private companies need to demonstrate their commitment to the future of the programme by the continued support of international collaborative rehabilitation research and intervention.
The entrance of the United States and Mexico into NAFTA and GATT provides an opportunity for Indian people with disabilities, who may have had ancestors travelling between the now artificially established frontiers of both lands, to become acquainted and to share their work. Once again there might be the opportunity for people with disabilities from a Navajo rehabilitation centre to sell their wares to people in Oaxaca and for the women's co-operative in Oaxaca to sell their embroidered shirts to the Hopis.
Catherine A. Marshall *, George S. Gotto, German Perez Cruz, Pedro Flores Rey, Beatriz de Obaldia Mitchell.
* 4043 E. Alhambra Pl., Tucson, Arizona, 85711, USA.
Phone & Fax : (520)322-9553, E-Mail : Catherine.Marshall@worldnet.att.net
References
1. Marshall CA, Gotto GS, Perez Cruz G, Flores Rey P, Garcia Judrez G. Vecinos y rehabilitation: Assessing the needs of indigenous people with disabilities in Mexico. Final Report. Flagstaff. Northern Arizona University, Institute for Human Development, Arizona University Affiliated Programme, American Indian Rehabilitation Research and Training Centre, 1996.
2. Marshall, CA, Gotto GS, Galicia Garcia 0. Vecinos y rehabilitation: Assessing the needs of indigenous people with disabilities in Rural Mexican Villages (Phase II). Final Report. Flagstaff. Northern Arizona University, Institute for Human Development, Arizona University Affiliated Programme, American Indian Rehabilitation Research and Training Centre, 1997.
TECHNICAL SUPPORT GROUP IN REHABILITATION FINANCIAL SUSTAINABILITY FOR NON GOVERNMENTAL ORGANISATIONS Contemporary issues related to financial sustainability of 'Not for profit' organisations 1. Rising costs due to inflation. 2. Recession in most parts of the world reducing the availability of philanthropic funds. 3 . Larger number of organisations competing for the same amount of funds. 4, Inability to find donors for long-term support. 5. Need to avoid dependency and to achieve self-esteem. 6. Need to achieve financial sustainability, 7. The feeling that the power of competition will improve efficiency. 8. Availability of a growing commercial market especially in services, 9. Influence of capitalism and market oriented economy. 10. The ideology that if welfare organisations can find their own income, philanthropic funds can be spared and utilised exclusively for subsidies.  1.Develop policies with the participation of all the stakeho]ders and disseminate them widely.
2.Initiate monitoring systems which identify flaws in the process and express the results rather than activities.
3.Initiate periodic evaluations to identify if the organisation has been fulfilling its mis-sion, if the objectives are completed or omitted and if the programme is viable and sustain-able.
4.Evaluations help to initiate a feasibi lity study before venturing into the change towards commercialisation.
Options for change
1, Complete philanthropic support of the programme.2. Partialself-sufficiency.
Some of tbe methods commonly used
"The process of commerciali sation of ' Not for profit' organisations sbould not drive olrt the phi]antbropic activities altogether, but should achieve the mission related objectives with better self reliance"
The Technical Support Group helps organisat ions to choose their goals and develop a policy based on clear 'Vision', 'Mission' and 'Ob-jectives' . It also helps a project to plan a well defined system of acdons with measurable outcomes.Mailing address :
DR. MAYA THOMAS, J-124 USHAS APTS 16TH MAIN, 4TH ELOCK, JAYANAGAR, BANGALORE - 56OO11, INDIA. PHONE: 91-80-6633762 FAX: 91-80-6633762 |
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL (VOL.9, NO.2, 1998)
Produced by:
Shree Ramana Maharishi Academy for the Blind
3rd Cross, 3rd Phase, J.P. Nagar
Bangalore - 560 078, India
Tel : 91-80-6631076, Fax : 91-80-6638045
Printed at:
National Printing Press
580, K.R. Garden
Koramangala
Bangalore - 560 095, India
Tel : 91-80-5710658
Address for correspondence :
DR. MAYA THOMAS, EDITOR
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL
J-124, Ushas Apts, 16th Main, 4th Block
Jayanagar, Bangalore - 560011, India
Ph : 91-80-6633762 Fax : 91-80-6633762
Email : thomasmaya@hotmail.com