Independent Living in Latin America: Progress in Adapting a "First World" Philosophy to the Realities of the "Third World"

1. Introduction
The translation of the English term "Independent Living" into Spanish or Portuguese, as applied by the Disability Movement (Movimiento de la Discapacidad ), is "Vida Independiente" (IL). This is a concept still not well understood in Latino Culture.

The term "Vida Independiente" (Independent Living) has usually been understood as being able to perform activities by oneself and enjoying independence from anybody else. Such misunderstanding remains in spite all efforts by the Disability Movement to develop concepts such as autonomy, defense of human and civil rights, self-representation, *self-advocacy, or securing for people with disabilities the right to decision making on all topics that affect them.

Up until the 1970's, Latin America had very few sports clubs or organizations for people with disabilities, and many of the ones that existed were administered by parents of children with disabilities. Since neither the government nor the relevant institutions offered options, these parents and other professionals organized themselves and took the initiative to build their own educational and rehabilitation system.

At the same time, the collective movement for the defense of human rights stimulated the founding of the first associations organized by people with disabilities themselves. The first actions of these emerging groups were to prepare themselves for the United Nations Year of People with Disabilities, celebrated in 1981, an event that was widely acclaimed throughout the Latin American Region.

Among other basic and fundamental concepts, the UN event forced awareness in both the disability community and the public about the importance of self-representation by people with disabilities.

Following international trends, the Region started to develop and adopt new terms such as "personas con discapacidad - people with disabilities" replacing "minusválidos o inválidos - crippled, or invalids" (in Spanish speaking countries) and "pessoas portadoras de deficiencias - people with disabilities" that replaced "deficientes o inválidos - deficients, or invalids" (in Brazilian Portuguese).

Also, new concepts emerged naming organizations with a "de - by" and "para - for" people with disabilities, clearly distinguishing those organizations for the advocacy of rights run by service providers and parents of people with disabilities, and those organizations run by people with disabilities. Again, all the debate was centered on the issue of self-representation.

The Independent Living concept, as it is understood in the developed countries, was introduced into the Latin American Region by the end of the 1980's. This new approach was introduced by small groups that had the opportunity to exchange experiences with peers from the United States and Europe.

1.1 The IL Movement in Brazil
One of the most important initiatives in Independent Living, one that generated a great impact in the region, was the organizing of the first Center for Independent Living in Río de Janeiro, Brazil (CVI RIO) in December of 1988.

Offering new approaches to the regional Disability scene, and spearheaded by a group of activists with disabilities from the grass-root movement, CVI RIO started to spread, and to establish a new organizational model that adopted the philosophy and the services offered by the centers for independent living in the "First World" and to the environment existing in their own country.

The wide acceptance of IL philosophy throughout all Brazil and the demand for personal services in the community with disabilities generated the quick emergence of new centers in different provinces and brought about the birth of the Consejo Nacional de Centros de Vida Independientes (National Council of Centers for Independent Living - CVI Brasil), founded in 1999.

Nearly 15 years after the birth of CVI-Río de Janeiro in January 2003, the number has grown to 20 centers for independent living in Brazil, and the IL concept is taking root and being adapted to answer the specific needs in the communities where they are rendering their services.

2 How the IL Movement Started in Brazil
2.1 History
After a period of intense activity and fervor by activists interceding for the rights of people with disabilities during the first half of the UN's Decade for People with Disabilities (1983-92), there was a gradual worldwide decline in the collective Movement due to a lack of new leadership and new challenges.

In August 1988, some Brazilian disability leaders made contact, for the first time, with a center for independent living in the US. They obtained a large amount of information, digested it, adapted new concepts and services based on the Brazilian environs and, four months later, the project was done: a work plan was defined and the Centro de Vida Independiente (Center for Independent Living - CVI RIO), a private, non-profit, by people with disabilities, managed by activists organization, was created in Río de Janeiro, inaugurated on December 14, 1988.

This center was the first one of its kind in Latin America; its team was formed by people with disabilities and disability professionals that had already been working together towards the social emancipation of people with disabilities, either by political demands for their rights, or through support activities by people with disabilities and their families.

The issue of how to organize the services was always supremely important for the group. The intention was to work in a way that allowed for an improvement in the quality of life and awareness of people with disabilities and the society as a whole. These services had to be done in a structured, objective and professional way, based on the experiences gained during the many years of volunteering in the civil rights movement.

The response stemmed from, on the one hand, the ever-expanding wish of each person in the team to fulfill the task; and, on the other, the great operating obstacles they found themselves against: lack of time to do "solely" volunteer work, the need to establish a "professional status" in the field, and lack of financial resources...

It was within this context that the model for these centers for independent living-- that now daily sprout throughout the country-- was born. It was based on a collective and progressive philosophy, and designed for and rooted in a Brazilian reality.

2.2 The Movement for the Rights of People with Disabilities and IL
Though there are some differences between the Brazilian and the Latin American strategies for the Movement for the Rights of People with Disabilities and the parallel Movement for Independent Living, these are not basic differences. Clearly, the Movement for the Rights of People with Disabilities, based on activists' volunteer work, establishes the founding principles and the social context for the Independent Living movement. Nowadays, both currents are necessary and complementary.

It can be said that one of the differences - or one of the aspects distinguishing one from the other - is that the Disability Rights Movement is not focused on rendering services, directly or indirectly, to people with disabilities in the region, for that is not its critical role. Its main goal is to demand rights and make people aware of the issue by promoting and enabling integration and for equal opportunities.

The strategies of the Disability Rights Movement were drawn up to generate public awareness about the existence of a significant segment of society that had been almost universally ignored. Moreover, the Movement suggested and continues to propose the drafting of laws to defend the civil rights of its members and to establish political influence to guarantee that its demands are heard.

The leaders of the Disability Rights Movement have historically focused their strategies so as to cover the wide collective of people with disabilities by approaching issues in a broad and all-embracing, and not on individual basis. Nowadays, we are somewhat of an "entity," called People with Disabilities, something that means a lot since as it has resulted in our being recognized as part of society. But in this effort to insert ourselves within the civil society as a "minority" to be considered and respected, the specific needs of individuals often are lost to the needs of the group as a whole.

The Independent Living movement is centered around the individual. S/he must be strengthened as a person so as to become the instrument of his or her own social emancipation. IL services must provide information, inspiration, self-awareness, and motivation for the person with disabilities to develop his or her capability to decide and take control of life. Social and political advances would mean little if the person is not prepared to enjoy them.

In the region, as in most of the countries of the world, the struggle structured itself through organizations by category or type of disability, where each defended its specific interests. Both in Brazil and the Region, associations of the blind, deaf, and physical and mental disabilities were there. The Independent Living Movement distinguishes itself because it participates in all the areas promoting the concepts of inclusion and respect for diversity, and works to develop a joint and cooperative effort among people with different disabilities.

In regards to concepts and services, the priorities of the Independent Living Movement in Brazil were, among others,

• Peer support groups;

• Personal assistance;

• Individual Autonomy;

• Information and assistance about civil rights;

• Accessibility;

• Technical assistance in development and counseling;

• Centers for independent living staffed by people with disabilities;

• Training for leadership;

• Professional training programs that did not already exist in local or national organizations.

Therefore, when linked directly to people with disabilities, the concept of independent living forwarded a new way of thinking, and promoted the following ideas:

• "You must control your own life"

• "You must be able to, in general, decide and make decisions about your future"

• "Independence does not mean you must do everything on your own"

• "You must own the right to decide what kind of help you need in your daily life, and on how you want to use your time for your own satisfaction and fulfillment"

• "As individual with disabilities, you should use your own experience to counsel your peers who are in situations similar to yours"

• "As professionals with disabilities, you have the best opportunities to help people in situations as similar as yours and, therefore, you must be professionally recognized as such."

These concepts generated the kind of services offered at present by the Centers for Independent Living in Brazil. They constitute the "new face" of the Disability Rights Movement, a new strategy that is a complement to it and that contributes directly to consciousness raising and to the "social rescue" of each individual with disabilities.

2.3 Birth and Growth of the Movement in Brazil
During the first year in existence (1989), the board and staff at CVI RIO worked as volunteers acquiring funds, building the social image for the new organization, and creating visibility among the mass media to transmit the new concepts and terminology for Independent Living. In January 1990, the Center earned its two first subsidies from private agencies. They were earmarked to start its daily activities through rendering services.

Its first services were training and creating a new peer support group, counseling and technical assistance in teams, organizing a library, developing manuals and other publications, recreational activities, etc. With an initial yearly budget of US$12,000, financed by agencies for development cooperation, the Center started to create a new mentality within the disability field in Brazil and, for the first time, people with disabilities started to be hired. They were both professionals and activists who offered direct services to clients with disabilities and their families, and worked in an organization that was totally managed by people with disabilities.

CVI RIO's standing grew quickly and echoed strongly throughout the country. As a result, in 1990, a group of people with disabilities from the city of São Paulo created CVI Paulista, the second Center for Independent Living in Brazil.

In 1992, allied to other national and international organizations, CVI RIO organized DEF' RIO 92, a consortium of six different international disability events. It obtained support and sponsors both in Brazil and Europe: 700 people from 26 countries participated. The event provided an assessment of the UN's Decade for people with disabilities and, among other activities; it offered the First Ibero American Symposium on Independent Living, and the First Iberian American Conference of Women with Disabilities.

Two new centers for independent living were established in 1994 with the help of CVI RIO, one in São Paulo (the second in the state) and another in Macaé, a little town close to Río de Janeiro.

In 1995, CVI RIO organized a course for Training Leaders for Independent Living for 40 people, including two from Argentina, and one from Uruguay. In five days, these leaders with disabilities shared their experiences and analyzed concepts and practices for Independent Living, managerial skills, fund acquisition, project development, and other necessary skills to start an Independent Living Center.

As a result of this training, that year, five new centers were inaugurated in different cities throughout the country: Maringá/PR, Belo Horizonte/MG, Santos/SP, Aracajú/SE, São Luis/MA.

By the end of 1995, the DefRio 95 event brought together great national and international movement leaders once again, for several days focused on an exchange of experiences.

By then, seven ILCs existed in Brazil, and all its leaders, gathered during the First National Meeting of ILCs, decided to create a new nationwide organization to push for the Movement's growth in Brazil and to strengthen links with movements of people with disabilities round the world.

Also, one of the fruits of DefRio 95 was the document entitled "Charter of Goals for Independent Living". This document delineated the basis for the Independent Living movement in Brazil, whose goals and objectives were valid both for all existing ILCs and those to be created hence.

In 1996, CVI RIO organized another course for Training Independent Living Leaders. About 40 new leaders from round the country participated, and it continued to promote local, national and international training, and granting scholarships to improve leadership among people with disabilities in Brazil and Latin America.

The organization continued to organize the Leadership Training for Independent Living in 1997, and through these courses, the philosophy and founding of new ILC continues to spread.

In 1998, the Second National Meeting of ILC took place in Curitiba-Paraná, with the participation from 16 ILCs. The Provisional National Council of Independent Living Centers was created, and asked to organize the III National Meeting for the creation of the National Council for Independent Living Centers (CVI-BRASIL).

September 1999 brought an opportunity for the participation of a Brazilian delegation in the "Summit on Global Perspectives on Independent Living for the Next Millennium," held in Washington, D.C. Leaders of the Independent Living Movement and of the Disability Rights Movement from 50 countries participated in the summit. Brazil participated with six representatives.

At the closing event of the Summit, the historical Washington Declaration (Declaracion de Washington [1]) was signed. This document is basic to goals and actions to be developed by the Independent Living movement worldwide. The first hands-on action was to create an International Network for Independent Living to promote the exchange of information and success stories that might incentive programs in all and every country (to be found as annex to this document).

In 2000, the III National Meeting on Independent Living was organized in the city of Belo Horizonte - Minas Gerais, Brazil, when 20 independent living centers existed in Brazil under national and international coordination. CVI-BRASIL (National Council for Independent Living Centers) was organized at the time.

During this same year, to fulfill its national mission, CVI-BRASIL developed the following actions and events:

• Organized an electronic network for disseminating information and encourage activities, and the development of actions

• Proposal for a Public Civil Action against public inter-state transport businesses to guarantee accessibility in this form of transport

• International Symposium on Human Rights for People with Disabilities, Washington, D.C., USA

• Lobby at the Federal Senate (Brazil) to pressure for the ratifying of the Inter-American Convention to Eliminate all Forms of Discrimination against People with Disabilities

In 2001, CVI-BRASIL actively participated in various activities such as:

• Independent Living Training, Curitiba, PR;

• Study Group for the Regulation of Federal Laws N¡ 10.098 y 10.048 on accessibility - Brasilia, DF;

• International Congress, Mexico, to propose the Creation of a Latin American Network for Independent Living;

• On-line meetings, to design frameworks for further activities in the organization;

• Television Programs, and Media promotion;

• Radio Campaign to broaden information on rights and citizenship;

• Response to information requests about organizing new ILCs.

During 2002, CVI-BRASIL continues activities and has, as main support activities to the inauguration of CVI-Londrina, the twenty-first Brazilian ILC, and the organizing of the ILC National Meeting in Curitiba, PR.

Further, CVI-BRASIL actively participates in the international and Latin American electronic networks for Independent Living created in 2001. So far, Mexico, North America, and 19 Central and South American countries participate in this network.

2.4 The Structure and By-Laws for CVI Brazil
In 2002, CVI-BRASIL (National Council for Centers for Independent Living) had 21 members countrywide. Their mission is to represent, articulate and support Brazilian ILCs, by supervising the dissemination and utilization of the philosophy and services for independent living within the framework of social inclusion.

As a result of IL's success, and because its concept and philosophy are still relatively new and not always understood correctly, professional groups and service provider institutions that are neither organized nor managed by people with disabilities have begun to claim the "independent living" term for themselves to highlight their programs.

One of the reasons for creating CVI BRAZIL is that the Brazilian CVIs wish to preserve their identities and do not want to see the basis of their movement being misused. They want to maintain the their centers' definition by keeping the control and decisions in the hands of people with disabilities.

Concerning those CVIs to be created in the future, CVI BRAZIL By-laws explain:

"Those future CVIs, in order to qualify to use the name Center for Independent Living, the CVI acronym, the term independent living, or any other related term, will have to request authorization from CVI Brazil. The name Center for Independent Living, and the CVI acronym may only be used by those entities after being approved by CVI Brazil after they demonstrate adherence to the basic concepts of the Independent Living Movement drawn up in these By-laws".

Concerning a CVI's characteristics, the document states:

1. the Board must be made up, mostly, by people with disabilities, and a person with a disability must occupy the Chair;

2. whenever possible, CVIs must hire professionals with disabilities for its technical staff, and these should be paid positions according to each CVI's conditions;

3. CVI's may be of local (neighbourhood, or administrative region), city or statewide scope whenever there might be only one CVI in the city or state; but if there is more than one CVI, in geographical terms, the individual catchment shall be decided by the CVIs in that state, and CVI Brazil might press its abiding opinion;

4. CVIs must service all the areas of disability and maintain, as possible, permanent and eventual services for all of them;

5. CVIs must render direct and indirect services to the community in general and, specifically, to the segments linked to the different areas of disabilities;

6. Among the services to be rendered by CVIs, there shall be Peer Support Services;

7. the services rendered to people with disabilities and their families must, whenever possible, be either subsidized, or free, or available for a nominal fee;

8. CVIs may offer services and consulting to others (individuals or entities) and may or may not receive payment, depending on their goals.

By creating CVI Brazil, the Brazilian Independent Living Movement, already nationally and internationally recognized by government and non-government organizations, expands its structures, establishes its national goals and presses for the creation of more centers. Therefore, the Movement works toward transforming people with disabilities, from compliant people into agents who pick their pathways, take decisions, control their own lives, and define their future as part of their communities and contributing to their countries' growth.

2.5 CVI's Self-Sustenance in Brazil
In Brazil, organizations of people with disabilities tend to work without a budget from either government or other sources of money. Therefore, finding their own resources to act "independently" is a basic and fundamental task.

As its origins were in the Disability Rights Movement, the new support services that appeared when the Independent Living Movement was created in Brazil, constituted another activity to add to the advocacy that, in those days, was performed on a totally volunteer basis.

To offer direct services implies costs. A structure must be put in place, staff must be hired, and an annual budget established. It is no easy task to form a financial and administrative structure in a country where the government does not invest sufficient funds for social services, and there are no other available funds to support the organizations. Considering this situation, the movement leaders started to look for alternatives and innovative strategies to obtain professions and reach their goals.

Some centers offer direct services to the common labour market. This was CVI RIO's case, when at the end of 1994, got its first contract as a service provider by training and initially hiring 50 people with disabilities for the open labor market.

People with disabilities work in the community, but under sub-contracts and they receive their salaries through the Center. They earn the same salary that their colleagues without disabilities do and also the same social benefits guaranteed by the law, such as transport, private medical care, food help, etc.

Under the contract, the Center receives a 20% handling fee from the business based on the total salaries for hired employees.

To this initial contract, others were added under the same basis. Years later, under this same kind of contract, CVI RIO increased its force to up to 120 employees with disabilities, some working as personnel at the Center, and others as employees to large businesses. The Center became financially autonomous, thus having its own resources to survive without relying on private subsidies, or government support. Services provided directly to people with disabilities, their families and the community, were free of charge.

This was a model practiced not only by Independent Living Centers, but also in many other organizations of people with disabilities throughout the country. This model was enabled by the signing of a law providing incentives for hiring of people with disabilities. Nowadays, the country has new laws that widen the work possibilities by people with disabilities.

However, considering all the political and financial instability in Latin America, this is not a state of affairs to be relied upon. As of 2002, in spite of the broad experience and knowledge accumulated, most CVIs in Brazil still needed financial help to develop and continue fulfilling their mission.

In reality, these organizations, until they become recognized as professionals and experts on subjects related to disabilities by the labour market, will have to rely on volunteer work and on cooperation both at national and international levels for their continuance.

3. Other Experiences in the Region
Aside from Brazil, there have been other experiences in Latin America and organizations have been created under the same philosophical approach the independent living movement has - as understood in the countries to the North.

More and more Latin American organizations that were initially formed as advocacy groups for the rights of people with disabilities have already begun to offer direct services to people with disabilities by people with disabilities. These services generally deal with employment, access, education, and help by peers.

While some still question the adoption of such a model and philosophy as "expensive" for under-developed countries, history demonstrates the opposite. Through a movement for independent living, still new in Latin America beyond Brazil, within their societies disability groups are undertaking important roles as advocates for their rights and suppliers of services germane to progress in disability issues.

Although the term "Independent Living" is not used in some Latin American countries, we can find some of the definitions in this philosophy, which correspond to that used in North America. In many cases, the term is used in the wrong form, and it is mistaken for the skills to do things on one's own (personal or individual autonomy).

Many Latin American definitions mention issues linked to family dependency. We will understand the reasons, if we recall that Latin American culture is centered on the family. Parents maintain their offspring under strict control, requiring them to live in the same house up until they get married or leave home for other reasons, such as job offers that necessitate moving out of town.

A disabled person tends to depend on the family for an extended period of time and, sometimes, forever. This can be explained as a result of paternalism and over-protection existing in Latin American culture that commonly curtails the development of personal autonomy and independence needed to gain access to economic activity.

Insufficient social services, including personal assistance services in the Latin American region may also hinder people with disabilities from linking to the "independent life." Many people with disabilities live with their families and rely on a family member, or on a house-helper to help them.

Many cultural differences surround the "Independent Living" concept but, apparently, it is people with disabilities who better understand these concepts, more that the professionals in the field do. In a survey done some years ago by the World Institute on Disability (WID) among people with disabilities in Latin America, it was observed that service providers generally use terms like "integration", "standardization" and other technical terms, while people with disabilities tend to use terms such as "right to be different", "right to choose", or "self-sufficiency."

3.1. A Development Concept in Latin America
To better illustrate this section, and better understand the relationship existing between the movement for independent living and what people with disabilities want for their lives, we would like to reproduce some experiences the people with disabilities and some professionals providing services to these collectives define as Independent Living concept in Latin America. We shall find out that the Independent Living movement has adopted ideas and brought them to life, demonstrating that there are parallels between the natural "wishes" people with and without disabilities have.

These statements were selected from the already mentioned survey done by the World Institute on Disability. In the survey, people were asked to express the ideas linked to the concept of Independent Living:

ARGENTINA:

• Integration: The possibility to improve all aspects of the lives of people with disabilities (educational, professional, social, etc.) so as to level out with people without disabilities.

• It deals with people with disabilities' self-respect and self-sufficiency, and implies the concept of "right to be different." This is something people with hearing impairments defend passionately, declaring that they belong to a different language community.

• Independent Living tends towards the process through which each person with disabilities has the possibility to control all aspects of his or her life, to have ownership of his or her decisions, and the consequences they bring.

• Facility of independence by using the "residual potential" as much as possible.

• What should take place in the stage immediately after the rehabilitation process.

• People who "in spite of" their disabilities, are fit to live by themselves, or with few help from others.

• Describes a lifestyle based on possibilities and limits, just like anybody else.

• It means being integrated into and active in all social groups, be it in personal life, such as family, or in the economy (by being employed), education, and socially.

• The possibility of personal development with economic independence, applying the right to choose which citizenry activities to perform.

BRAZIL:

• Is the right each person with disabilities has to decisions about his or her own life, even when needing daily assistance to perform those daily activities.

• Provides to an individual with a disability the training and self-sufficiency to manage his or her life.

• Expresses the notion of "self-sufficiency" for people with disabilities, and implies rescuing the power to manage his or her own life, select, and take decisions s/he finds most fitting. This concept challenges the traditional and paternalistic attitudes of society and its institutions which often assume they provide services to this section of the population.

• Describes the self-sufficiency of a person with a disability; the possibility of not depending on anybody, to be able to subsist, of working to survive, and to reach his or her own goals by his or her own methods.

• It means that people with disabilities find their own ways to develop themselves, without having to subject themselves to the conditions set by institutions and families, or to take the decisions that affect their lives.

CHILE:

• Most important, is the effort to get to a stage of Independent Living.

COLOMBIA:

• It means "complete development." Points to the process handed to the person with disabilities by the social and economic skills to transform them in active members in their communities, just as everybody else.

• Defines the individual's or group's attitudes against the protective strategies that generate dependency and passivity.

• It is the possibility confronted by a person with a disability to actively participate in managing his or her life, and to develop oneself through mutual assistance.

• Is the capacity to develop daily activities under maximized autonomy and independence.

• It's the services offered by an organization to implement the needs of people with disabilities so as to guarantee personal autonomy.

HONDURAS:

• Is the life that all humans would enjoy to have, acting independently, taking personal decisions, participating in society and making oneself responsible for the successes and duties one must understand as rights.

MEXICO:

• "Social Integration" speaks to the point that actions or acts taken by people with disabilities themselves are a strategic part of their own development, and their participation is vital to society's enrichment. Therefore, it means that people with disabilities must be provided the necessary requirements to acquire the same opportunities the rest of members in society have.

• Is the process that allows people with disabilities, through their organizations, learn how to live as independently as possible, and to integrate themselves in the activities of daily life such as education, professional training, work, recreation, culture, sports, etc.

• It means "self-sufficiency organizations," and it also means that people with disabilities have to unite themselves to defend their rights (...)

NICARAGUA:

• Is the power to daily perform daily activities as we wish and depending on the residual capacity in each person. It is an inalienable human right. To achieve it, architectural barriers must be eliminated as much as possible to allow for total mobility and social participation.

PANAMA:

• It implies that people can not live on their own.

• It means conditions that characterize and improve daily life of people with disabilities to satisfy material needs such as access to a full and valid life.

PARAGUAY:

• Is the integration into the community and in all its aspects (education, social life, work), and the autonomy and wholesome development of people with disabilities.

PERU:

• "Social integration" is the process by which a person with disabilities participates actively in the same way than others, applying their rights and taking up responsibilities in building a better society, in justice and solidarity.

• It is the possibility given to people with disabilities so they can live their lives with the necessary independence, without being subjugated to anybody, neither parent nor society. This rescuing of autonomy is linked to economic self-sufficiency, free access and full citizenship. It is also linked to experiencing sexuality, and the managing of their futures as participants and subject to their actions.

URUGUAY:

• It means taking control of life's economic aspects, and taking decisions about present and future with as a minimum of interference as possible by others.

• Essentially, it means that people with disabilities may live independently and as adults, through the knowledge and practice of their rights, including rehabilitation, education, work, access, adequate transportation, social security, etc.

VENEZUELA:

• When people with disabilities live on their own, and with the same responsibilities as the rest of society.

4. Conclusions
4.1. Considerations about CVIs in Brazil
During the 70s and 80s, the movement for the rights of people with disabilities inn Brazil and Latin America grew fast, based on some activists and the support of social and political progress throughout the world. Self-motivated and working in their spare time, these leaders had few opportunities to develop strategies linked to new concepts, or to a new philosophy. Training was nowhere to be seen, and the improvements in their personal skills were limited. Moreover, they could not learn from the experience of their elders, or from possible educated successors. After decades of intense practicing in defense of their rights, there were few emergent leaders that were able to take their place, or to keep on with the work they had started.

In Brazil, the Movement for Independent Living was born through a natural evolution of the traditional Disability Rights Movement. Initially based only in the defense for its rights, it advanced until people with disabilities started to learn how to take control of their own lives. Later, this new knowledge was applied to improve the lives of their peers.

The Independent Living Movement is a natural outgrowth of Disability Rights Movement and has added a new strategy vis-á-vis the aspects that had failed in its recent history.

The IL Movement emerged in a better environment than that in the late 70s. More communication, exchanges and recent experiences by the leaders gave them new strategies to reach their goals. Directly opposite to the previous methodology, the center shifted from shyness to self-consciousness and to make it possible for people with disabilities to make social and personal changes.

In such a setting, the Movement for Independent Living has reached the support and acceptance by the Disability community throughout the country, negating the assumptions that IL is only relevant in the richest countries.

In Brazil, the Independent Living concept is starting to be understood. It implies that there is a basic resource which can not be bought, but you need to have it within, and that nobody can take it away from whomever has it, i.e., that self-confidence ... that self-determination. This enables the person to feel free and sufficiently independent to search for survival in dignity. For people with disabilities, it means autonomy to control his or her own life, and to contribute to the improvement of society.

The Brazilian strategies for IL are based on communicating qualified and experimental information, support services, leadership training and improvement of civil and human rights. Everything weighs the same in this process and each component must be developed concurrently.

Brazilian centers are growing and reaching important roles in their communities. Some similar Independent Living experiences are starting in other places in Latin America.

For example, in mid 1999 Mexico, a group of people with disabilities started to promote the issue of IL at a course offered by the International Team on Wheelchairs Polish-Club, from Poland under the title of II International Forum for Independent Living. The event offered training in swimming, gym, horse riding, athletics, wheelchair riding and sports using wheel chairs, and skills in the use of a wheel chair. Its purpose was to reach independence in daily life.

It should be noted that the Independent Living concepts, as understood in Brazil would, in cases, be opposed to this concept and to some of the practices taught by Mexican colleagues and, perhaps, from the Polish; since sport practices, among others, is not necessarily considered as one of the services, or one of the bases for IL.

In June of 2001, the same Mexican group, using the title "International Independent Living Organization ("Organización Internacional Vida Independiente A.C) in association with the

Mexican Foundation for Social Integration (Fundación Mexicana de Integración Social I.A.P. ) and the Mexican Government, organized the first Seminar on Accessibility on the Internet, held Mexico City, and invited disability leaders from 19 Latin American countries with support from Canadian and US specialists.

At this meeting, a Latin American Network for Independent Living (Red Latinoamericana de Vida Independiente) was informally created to convey the concept and philosophy of IL in those countries and through virtual meetings on the Internet.

The region is certainly testing that IL is not a formula only valid for the First World. An Independent Living methodology may demonstrate that information, accessibility and participation might be given "without cost", if it is transmitted under the control and commitment of people with disabilities so as to transform society into a place for everybody.

4.2. Other considerations concerning the Latin American Region
Differences between the Independent Living movement in Latin America and other underdeveloped countries, and the Anglo-Saxon world and the industrialized countries are the same as those in the context of economic development and of human rights when cultural, social and economic aspects are compared for each country or region.

For example, family values are significantly more powerful in the Latin American culture than in other cultures. Autonomy, on the other hand, is a value from the Anglo-Saxon culture. These different cultures are reflected in the disability community, as they are in other aspects of society.

In predominantly Catholic America [used geographically as the continent, excepting US and Canada], where Portugal, Spain and the surveyed African countries may be included, all culture is centered under the eye of the church and the family; therefore, the government. The natural form of handling an issue is "paternalism": in the beginning, inside the family; then in church; and finally by society in general.

Stemming from this situation, in Latin American countries it was easier to use campaigns like that of the Telethon than change the social structure to integrate people with disabilities. Governmental benefits such as free public transportation exist in theory, but truly, bus and underground train systems do not offer the necessary accessibility for their use. This fact confirms that it is easier for society to look for partial solutions based on charity (generally demagogic and skirting the problem), than to establish definite solutions.

Research illustrates that one of the areas revealing a substantial cultural difference in Independent Living is the area of personal assistance services (PAS). When analyzing the survey responses to the definitions of independent living, one can infer that said services are not yet expressed within the goals people with disabilities have in the region. This is not a conversation topic in Latin America yet, if the importance of family as a hub for all social links in culture is considered.

In the IDEAS 2000 Portfolio'96, Kathy Martinez suggests in an article titled, "Cultural Adaptations of Independent Living Philosophy: Some Preliminary Observations," that "in the US, personal assistance services exist on the understanding that all adults with disabilities want to live outside their parents' home. We must ask ourselves: whose definition is this?" Ms. Martínez follows by considering that, "in many cultures, independence means being able to contribute to the family income or in some other way respected by the community. In the United States, personal assistance services, in the best of cases, are understood as being done in exchange for payment. In other cultures it is best if done by family.' Her conclusion perfectly represents the Latin American way.

The survey also reveals that not very many Latin American organizations use the Independent Living term, and that obviously they do not identify themselves with the disability rights movement. On the other hand, it is the same people with disabilities who are interceding for equal rights for the group.

Whether they use the term Independent Living or not, people with disabilities who participate in the movement for their rights understand perfectly what such a term means. In most cases, those who mistake the meaning of the term are the technicians or 'specialists' in rehabilitation, or in special education.

Many professionals insist on using terms like 'standardization', or 'integration' that people with disabilities reject because they prefer the terms 'right to be different', 'equal opportunities', or 'inclusion.'

The conflict between these concepts stems from the fact that the terms standardization and integration promote the dilution of the differences present in people with disabilities and also imply efforts to adapt them to social standards. The terms "right to difference" and "equal opportunities" reflect an approach that recognizes and accords equal value to differences, to adapt society to the reality of all members, accepting a broad range of peculiarities, including disabilities.

What is being encouraged through the use of the rejected terms are distorted concepts and mystifications, portrayals of people with disabilities that range from the 'poor invalid' to 'superman'. These indicate the typical mentality of people not used to sharing the same spaces with people with disabilities, or simply that they are being viwed as 'patients'.

From this research, it appears there is only one main difference between the Independent Living movement in industrialized countries and the Portuguese and Spanish speaking ones. The industrial countries have been able to provide an effective availability of social welfare benefits to support the independent living philosophy, including the availability or access to technical assistance, and effective policies to adapt the environment. While in less developed countries human rights for people with disabilities are recognized just the same as in the more developed countries, there is a difference. In the latter, this recognition is rather broad within society, while in the less developed this recognition it is diffuse, and it is mostly a utopia for a person with disabilities to truly reach an independent life.

In spite of that, we should balance this assertion and point towards the positive aspects seen in several countries in the region. Until the end of the 80s, the main and sole activity by organizations of people with disabilities in the region had been one of a political character to defend re-conquered rights. Mainly, they were based on volunteer work and the professionals participating as active members were few. They did not provide any kind of services to their peers, not even in counseling, adaptations, or other important issues.

It was not long ago that these organizations started to realize that their role should not stop with militancy. In countries where rehabilitation does not reach over 2 or 3% of people with disabilities, and where traditional models are not accepted, people with disabilities -as the Brazilian Independent Living centers- are starting to offer and control the handling of some services.

Our colleague Kathy Lysack, in her report, IDEAS 2000 Independent Living Survey: International Findings, stated that "even when the principles of self-determination and autonomy guide the core of the movement of disability organizations, in low income countries the main need is towards an improvement in the rendering of special services; because the rehabilitation services, at the national level, are not fit." And insufficient, we could also add.

In spite of that, the efforts made by Latin American organizations of disabled people and those of their parents, in their daily work have been transforming their traditional dependency in the decision-making processes, and are taking matters into their hands. They have also been taking the initiative -as agents of change- and offering social welfare services. Progress is slow, but constant. It brings these organizations closer to the goals of the independent living philosophy, including in those places where actions do not specifically follow this concept.

This new focus is causing an important shift in the traditional social structure in the region, and is generating acceptance of new concepts such as 'inclusive education'. Services are no longer in the hands and under the control of specialists, and are being handed over to the consumers themselves. The latter -instead of being 'patients'- are starting to transform themselves into active subjects of their social inclusion.

Many specialists and institutions are starting to complain and react by arguing that they are losing their 'market'. Some others are realizing that they should join the new approach and change their attitude because, in reshaping their professional role to adapt it to the new inclusion and equalizing of opportunities paradigms, they might become indispensable agents in the transition process, and the establishing of alternative approaches to the already aged medical model.

This is, really, a political revolution, but different than those that the Latin American countries are so used to suffering. Now they are not dealing with being flipped from one dictatorship to another. Rather, it is the dictatorship of the medical and traditional institution models that is being transformed into full, and responsible citizenship.

Finally, it seems to be a global process of consciousness raising by people with disabilities in Latin America; a process accompanying the core of this region's population to better the full exercising of their rights, in transforming the world in a better society for all. It may well be a human 'survival strategy' in this new millennium. Obviously, people with disabilities have plenty to say.

As humans, all issues related to the population with disabilities have to be understood and treated holistically and as part and parcel of social, cultural, political and economic relations. The special or unique aspects of each disability are but just one aspect that has to be taken into account within the context of individual social functions.

Equality of opportunities, respect for everybody's human rights, and for individual differences and personal autonomy are concepts that can be applied to all the living; despite where they live, or varying physical, mental, or emotional condition. The truth is that these concepts are understandable and applicable in underdeveloped countries, in different cultures, and in different religions.

The application and significance of these concepts might be the best legacy people with disabilities can contribute to human culture in the new millennium, and for a society for all.

Endnotes
[1] Declaración de Washington (http://www.ilru.org/summit/40-decla-spa.htm),

[2] CVI Brazil's Internet page is: http://www.cvibrasil.hpg.ig.com.br/. E-mail address for contacts is: xandao@wnet.com.br

[3] For more information on this and other Brazilian laws, go to the Coordenadoria Nacional para Integração da Pessoa Portadora de Deficiência (National Coordinator for Integration People with Disabilities- CORDE) at http://www.mj.gov.br/sedh/dpdh/dpdh.htm or by e-mail, at dpdh@mj.gov.br

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