Chapter 4: Monitoring Individual Human Rights Experiences

The first activity undertaken in the current study was to hold a 7-day training seminar in the Asturias Hotel in the city of Santa Cruz. The participants included 20 people with disabilities (16 monitors and 4 site coordinators); the president and secretary general of C.O.B.O.P.D.I.; the coordinator of N.U.R. University, and 2 English translators.

Special guests included the Omubudsperson, a representative of the National Congress Human Rights Commission, two representatives from Social Management (S.E.G.E.D.E.S.) from the departmental prefecture, and representatives from DRPI International.

The objective of the seminar was to present the “Monitoring The Personal Human Rights Experiences of People with Disabilities” project and to train the participants who would carry out the project in Bolivia.

Throughout the monitoring project, 117 interviews were conducted with people with a wide rage of disabilities. The interviews were recorded on cassette tape and subsequently 112 were transcribed (5 could not be transcribed due to problems with the sound and/or difficulties in understanding the Aymara language). 102 of the interviews were then coded: 65 from Santa Cruz and 37 from La Paz.

Simple random sampling was used due to the accessibility and participation of people with disabilities. There was an attempt to sample equally between the two departments. The field research yielded the following results.

4.1 Description of Field Research Sites (Locations of Interviews)

Of the two departments chosen as sites for the field research (Santa Cruz and La Paz), two major cities from each were selected.

1) Department of Santa Cruz de la Sierra

Santa Cruz is the largest department in Bolivia, with 2.4 million inhabitants (2005) and covering more than 370,000 km² (33.74% of the national territory). Located in the eastern part of Bolivia, it borders Beni to the north, Cochabamba to the west, Chuquisaca and the Republic of Paraguay to the south, and the Brazilian state of Mato Grosso del Sur to the east.

It is Bolivia’s most industrialized region and the main centre of national consumption; it has the highest per capita income, with a high rate of annual growth, mainly due to agricultural and forestry production.. It is also the most important region for hydrocarbon production. The capital city is Santa Cruz de la Sierra.

Two of the 15 provinces that make up the department of Santa Cruz were selected as field research sites.

Province of Andrés Ibáñez

Andrés Ibáñez is the most important province in the department of Santa Cruz, because it is home to the city of Santa Cruz, capital of Andrés Ibáñez, and Bolivia’s economic engine. Some of the largest national and international companies have their headquarters in this city, and it is also host to many international conferences as well as a variety of festivals.

It is situated between the foothills of the Andes and the Rio Grande.

The province is divided into 5 municipalities and 18 districts:

• Cotoca
• Ayacucho
• El Torno
• La Guardia
• Santa Cruz de la Sierra

Organization

The city of Santa Cruz de la Sierra is divided into neighbourhood units and neighbourhoods.

There are 8 concentric rings approximately 1 km apart from each other. It covers a total area of 38,800 hectares (388 km²) and belongs to the district of Palmar del Oratorio.

Economy

As capital of the country’s largest department, it has a well-developed infrastructure of public services and roads and an active commercial and business life. The main sectors driving the economy are hydrocarbons, forestry, agriculture and construction. According to recent data, almost 80% of national agricultural production is concentrated in Santa Cruz, which, in addition, contributes more than 35% to the G.N.P. It also has the largest airport in the country, which makes it an ideal city for fairs, international events and investments.

It is important to note that in Santa Cruz, the private sector drives development; there is considerable investment in construction (office buildings and homes), the commercial sector (big supermarket chains and shopping centres), health (state-of-the-art private clinics), fashion, national and international events, banking, agriculture, hotels and gastronomy (which are highly developed), as well as in the dozen or so private universities found in the city.

Province of Obispo Santistevan

Obispo Santistevan is a province in the department of Santa Cruz, founded on December 2, 1941. The name pays homage to the bishop José Belisario Santistevan Seoane (1843-1931), who was the driving force behind the construction of the Santa Cruz Cathedral and the first gay bishop.

Santistevan, together with Warnes, Sara and Ichilo, form part of the so-called “Bloc of integrated provinces in northern Santa Cruz.”

This province is well-known for its agricultural and livestock production, and is Bolivia’s largest food producer, with highly developed technology. The Guabira sugar mills in Montero and the U.N.A.G.R.O. sugar mills in Mineiros are found in this province, with large sugar cane plantations. There are also sawmills, rice paddies and cotton fields.

Municipalities and major towns

• Montero - capital of Obispo Santistevan
• Mineros - 51,356 inhabitants
• Saavedra - 19,114 inhabitants

Montero is the capital of the province of Santistevan in the department of Santa Cruz. It is located in the heart of Bolivia’s agribusiness, 50 km from the departmental capital of Santa Cruz. With 90,837 inhabitants (2005), it is the largest provincial capital in the country.

Known for its sugar industry, the city is the agricultural and sugar cane centre, with the Guabirá sugar mill, which is the largest producer of sugar and alcohol in the country.

Montero was legally registered as a city by law on December 3, 1986.

With significant commerce and banking activity, the city is located at 17º20’ S and 63º23’ W at an altitude of 298 metres above sea level. It covers an area of approximately 19km². With a dry sub-humid climate, the average temperature is 24.5ºC. July is the coldest month of the year and December the warmest.

Montero has the highest population growth rate in the department of Santa Cruz.

As described, the two cities selected for field research in the department of Santa Cruz are the most important and have the largest populations due to their extensive economic activity.

2) Department of La Paz

Another of Bolivia’s nine departments is the department of La Paz, located in the northeastern part of the country, with a population of 2,812,607. It occupies 133,985 km2. Nuestra Señora de La Paz is its capital city, situated at an altitude of 3,640m, and is the site of the national government.

The department of La Paz was created by the Intendencia de La Paz de la Real Audiencia de Charcas by means of Supreme Decree on January 23, 1826. Having undergone many jurisdictional and territorial changes, it now covers an area of 133,985 km².

It borders the departments of Pando to the north, Oruruo to the south, Beni and Cochabamba to the east, and the countries of Chile and Peru to the west.

The department is divided into 20 provinces; the provinces in turn are divided into 80 townships, which are further divided into 438 districts.

La Paz is governed by the Prefect, which is the representative power of the executive and is in charge of enforcing laws, overseeing road maintenance, and the general welfare of the population. Next in the hierarchy is the governor (alcalde municipal), in charge of providing basic services to the cities and municipalities. The provinces are administered by the Sub-Prefect, and the districts are administered by the mayor (corregidor).

The city of La Paz

La Paz (officially Nuestra Señora de La Paz) is the capital of the department and the seat of the Bolivian government. In 2001, according to census data, the entire metropolitan area (including the city of El Alto) had a population of 1,552,156. Located at 3,650 meters above sea level, this metropolitan area is Bolivia’s largest and most populated.

La Paz is set in a deep canyon surrounded by the Andean mountains of high altitude, between the high Andean Plateau and the lower valleys.

The southern part (Zona Sur) has a similar geography, with lower hills and at a lower altitude than the rest of the urban area.

In the Andes mountain range to the east of the city looms the Illimani (6,465 metres above sea level), whose silhouette has been the emblem of the city since its foundation.

Administrative Organization

The municipality is divided into the following macro-districts: Centro, Cotahuma, Max Paredes, Periférica, San Antonio, Sur, Mallasa, Hampaturi and Zongo (the latter two being rural districts).

Main neighbourhoods and areas

• Casco Viejo: This is the historical city centre. Today there are museums, hotels, stores, and important buildings, such as City Hall and the Central Bank of Bolivia.
• Downtown: The neighbourhoods of San Jorge and Sopocachi form part of the downtown area. This is where the main stores, hotels and most embassies are located.
• Sopocachi: Probably one of the oldest residential neighbourhoods, and located only 10 minutes from downtown, this old residential neighbourhood has managed to maintain its character despite urban development and growth.
• San Pedro: Built around the “San Pedro Square” (officially Plaza Sucre), this neighbourhood is mainly residential although it does have numerous stores and small businesses, with printing houses being common in the area.
• Miraflores: Miraflores is separated from the downtown by a large canyon and is connected by the Bridge of the Americas and two avenues. This is where La Paz’s main hospitals and universities are located, including the important U.M.S.A. Faculty of Medicine. Miraflores is also home to the Hernando Siles stadium (45,000 spectators).
• Zona Norte: This area is mainly industrial, where the food industry plays an important role. The Cerveceria Boliviana Nacional beer company is located here.
• Zona Sur: The Zona Sur sits at a lower altitude (2,800-3,200 metres above sea level) than the rest of the city. This is where the majority of La Paz’s residential neighbourhoods, like Calacoto, are found.

Economy

The department’s economy is based on wood exports from the northern part of the department, clothes manufacturing in the city of La Paz, and commerce.

City of El Alto

El Alto is located northeast of La Paz at 4,000 metres above sea level, on the Altiplano Plateau. It has a population of 827,239 (2006) and, together with La Paz, forms the largest urban centre in the country.

The Public University of El Alto, the international airport and the Bolivian Air Force are all found here. There is a considerable retail sector as well as hydrocarbon plants and factories, and it is the main site for mineral resource exports in the country. El Alto also has a symphony orchestra, as well as museums and other cultural institutions.

The city has mainly served as a settlement for immigrants from the rest of the country, especially those emigrating from rural areas in search of better economic opportunities in “the city”. As a result of this migration, it is a modern city of new, low-income housing.

El Alto was originally a satellite neighbourhood of La Paz, but as the population boomed, it received the ranking of “Provincial Section” on March 6, 1985 and finally that of “City” on September 26, 1986.

El Alto was the site of the Gas War of October 2003 that saw more than 70 deaths caused by police repression. It was this incident, ordered by then-President Gonzalo Sánchez de Lozada, that finally prompted his resignation on October 17 of the same year.

The main social movements in El Alto are F.E.J.U.V.E. (Federation of Neighbourhood Committees) and C.O.R. (Regional Labour Federation).

Main Neighborhoods

The most important areas are Ciudad Satélite (whose first residents were public servants), Villa Exaltacion, Villa Adela (whose first residents were military personnel) , 1ro de Mayo (whose first residents were factory workers), Villa Alemana, Villa Dolores, El Kenko, Alto Lima, Senkata, Nuevos Horizontes, Mercedario, Kollpani, Villa Ingavi, German Bush, Ballivián, and Rio Seco.

Economy

The inhabitants of El Alto make use of local resources, and due to the region’s climate, many adobe constructions can be found. It is a rapidly growing city with markets for food, hand-made clothing, used clothing, etc. The July 16 market and the La Ceja market are typical of the city, where one can buy anything from a rusty screw, to a new car, some land or a house. Unfortunately, in the La Ceja market there are also bars and brothels, heavy traffic, garbage and a high crime rate. These are the main urban issues facing the city of El Alto.

These areas were selected for field research mainly because together they make up the largest urban areas in the country, and as such they are home to a high percentage of people with disabilities.

4.2 Characteristics of Participants

As shown in the graph above, the largest number of people with disabilities interviewed in this study were between 36 and 50 years old (44%), while 9% were less than 18. Of note, 15% were over 50 years old, the majority of which live alone or have been abandoned by their families.

The largest number of people with disabilities interviewed in this study were male (67%), while 33% were female.

Over 35 days, 37 interviews were conducted in the cities of La Paz and El Alto. In the city of Santa Cruz, 33 interviews were conducted in 43 days, and in the province of Obispo Santiestevan (Montero), 32 interviews were completed over 40 days. There were 4 teams at each site, working in pairs.

In terms of employment, 34% of the interviewees were not working because either their disability impeded their ability to work, or because their disability prevented them from accessing the workplace. For 66% of interviewees, employment provided a source of income, although it is important to mention that most were working in informal jobs such as selling telephone cards, jams, etc.

Various studies show that the most common type of disability is physical disability. In this study, 72 people with mobility disabilities were interviewed, 15 with visual disabilities, 12 deaf or deafmute, and 3 with intellectual or mental disabilities.

Note #1

An anticrético is a contract to rent property whereby the renter pays the landlord a fixed sum at the start of the rental period in lieu of paying monthly rent. At the end of the rental period, the tenant receives the sum back, in full, from the landlord, giving him in effect rent-free living.

One of the greatest needs of people with disabilities in Bolivia is housing. The highest percentage of people with disabilities live with a family member or friend (29%) because their economic circumstances do not allow them to pay for basic services.

The other main category of people live in rented facilities (29 people), while 16 people with disabilities live as caretakers of other people homes that have been ceded to them.

4.3.2 Cross-Sectional Analysis

Below we present comparisons between human rights implications and participant attributes (sex, age, region, and type of disability).

The largest group of people that do not have access to justice is of males between 36 and 50 years of age, who report not feeling respected by authorities. There is also a significant percentage of people with physical disabilities that are excluded and not treated equally.

As is evident from the tables above, it is generally males who do not have access to education. As in the previous case, it is people with physical disabilities who have less access to the education system, whether it is formal or higher education.

Males from 36-50 years of age have a higher percentage of isolation and lack of accessibility to information and communication. This is because more men were interviewed than women, and because men participate less due to employment reasons, thus they are more excluded from information and communication systems.

The group most vulnerable to isolation and to not participating fully in social, recreational and cultural activities are males between 36 and 50 years of age. This same group is not respected and valued in their social environment, because they are considered a burden for society, and in order not to deal with them they prefer to push them to the sidelines.

In general, and in all age groups, more males feel excluded and treated unequally in the social sphere, keeping in mind of course the margin of error that may be present in the unequal distribution of the sexes.

Women between 36 and 50 years of age are the group most isolated and excluded from their family environments. In most of the cases studied, it is because the women have been abandoned by their partners and they have to raise their children by themselves. Similar results were obtained (12 females and 13 males) in which the interviewees said that they are not respected by their families, in many cases due to selfishness and the lack of patience of family members with respect to their relatives with disabilities.

People with physical disabilities have the greatest difficulties in accessibility, participation, and respect within the family, due to their need for space and greater levels of care.

With respect to health and rehabilitation, 35% of males do not have medical care, while a similar percentage (25%) is found in women. The reasons are similar; they are isolated and excluded from health and rehabilitation services mainly due to physical disabilities (wheelchairs, crutches, etc.) and for economic reasons.

Isolation and lack of accessibility to social protection programs is experienced by more men with physical disabilities (43%) (wheelchair, crutches, etc.); this marginalization is due to discrimination by program staff and also due to a lack of information about the existence of such programs, which do not disseminate information about their services to the people who would benefit from them.

Work is another field in which people with disabilities feel discriminated. Overall, in the work section of this study, the percentages are higher for men (taking into account, of course, the margin of error). Twenty-four per cent of men do not have access to employment and 22% of women suffer the same problem.

The main reason for discrimination comes from employers. However, when they have the opportunity to work, 14% of men do not feel respected at work and 16% of women, who receive better treatment from their employers and colleagues. People with physical disabilities (wheelchairs, crutches, etc) experience the greatest accessibility difficulties in the workplace.

The area with greatest isolation and lack of employment opportunities for a person with disabilities is the city of La Paz, due to the type of terrain and the geographical location (altitude, cobblestone streets, steep hills).

The lack of accessibility to transportation is striking, especially for males, with 35% that cannot access public or private transportation services. Fewer women lack access to such services (25%), because vehicle operators are more tolerant towards them.

People with physical disabilities (using wheelchairs, crutches, etc.) are most excluded from access to transportation services, because of no access to transportation, because they have the greatest problems getting into a car or boarding a bus (public transit), especially those who use wheelchairs who need assistance and time, which operators are not willing to offer. Since they cannot access public transit, they have to use private means of transportation (taxis), which implies increased expenses.

Recommendations from Interviewees

The following table outlines a series of recommendations suggested by people with disabilities interviewed for this study. The recommendations are intended to improve their treatment in society and to put an end to such discrimination and exclusion.

Twenty-five per cent of people with disabilities say that it is necessary to enforce and implement the laws that guarantee their rights and conditions of equality.

For example, the person with disabilities that suffers discrimination... whether the people who mistreat the person with disabilities are authorities or members of society, they should be legally charged according to the penal code, because we have the right to live just like any normal person… This would be respecting our rights.

We should get together and demonstrate, or there should be a decree or a code of conduct to ensure that we are treated well, by law, our rights should be recognized.\

Creating awareness in the population is a recommendation suggested by 18% of the people with disabilities interviewed in this study, with the objective of reducing societal abuse and discrimination towards them:

We need to open people’s minds and tell them that people with disabilities can do many more things than, if we have more potential than, quote, common people.

Inform people, be sociable, more communication. Above all, so that family members will accept a person with disabilities in their family.

4.4 Conclusions

In general, people with disabilities suffer constant abuse and exclusion. Just like other vulnerable groups, they are not free of barriers and they face multiple forms of discrimination as a result of their disabilities.

People with disabilities seem to be more excluded and isolated in family and social settings than in other spheres. In fact, more than 50% of people with disabilities reported having felt discriminated against in their social and family environments and being unable to actively participate in these spheres.

There are many obstacles and barriers in education and work, especially for those with physical impairments (wheelchair-users), who face greater work-related discrimination and exclusion. These problems create the need to enter the informal labour market with low wages and a poor quality of life.

Standard of living

Protection services, social assistance and health care in most cases are neither directed nor supervised by the state. As a consequence, people with disabilities are limited economically and isolated from accessing such services.

It is important to note that the public centres of provision of these services are the main sites of exclusion and discrimination against people with disabilities.

In the street, when using public transportation or public facilities, people with disabilities are more exposed to abuse and discrimination. People with physical disabilities are the most vulnerable group, as they are not respected and receive poor treatment in all means of transportation.

There is a lack of information in Bolivian society about how to treat people with disabilities and many are insensitive and take advantage of their disabilities to exclude them and not respect them for their differences.

In terms of responding to abuse and discrimination, people with disabilities do not report such situations out of fear of the possible consequences. In fact, the people with disabilities that decided to report instances of abuse and discrimination were neither taken into account nor compensated for the ill-treatment they suffered, despite the existence of Law 1678 which protects them.

Based on their experiences of discrimination and oppression, the majority of the people with disabilities interviewed in this study recommended the application of existing legislation to address and put an end to the discrimination and abuse they face, in addition to the creation and implementation of new laws that would ensure equal rights. Many interviewees also suggested creating awareness in the population in order to receive better treatment and be socially respected.

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