Qualitative research into the needs and priorities of disabled people

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Yo no tengo ningun problema, el problema es de ellos
I don’t have a problem,

the problem is theirs

(Disabled person in Montero)
Qualitative research into

the needs and priorities of disabled people.

Conducted in Sucre, Santa Cruz, Tupiza and Guaqui, Bolivia.

April-December 2006.
Researcher: Rebecca Yeo and Artist: Andrew Bolton
April 2007
Las personas discapacitadas se encuentran en un lugar de oscuridad donde no ven el sol. Para alcanzar al sol tendrían que pasar días, semanas, meses, años; tendrían que caminar como sea, tendrían que cruzar montañas y ríos -donde se supone que no deberían andar- y comunicarse con los demás. Avanzar así a un camino donde pueden encontrar ciegos, sordos, personas sanas y caminar juntos, luchar juntos, junto con ellos construir un país para bien de todos no solamente para las personas con discapacidad, sino también para las personas sanas, ciegas, sordas. Para mi son todos iguales.”
Disabled persons find themselves in a dark place where there is no sun. To reach the sun they have to spend days, weeks, months, years, they have to walk in whatever way they can, to pass mountains and rivers where they are not supposed to walk, and to communicate with other people. In this way they will reach a path where they find blind people, deaf people, non-disabled people and walk together, struggle together, build a country for the good of not just disabled people but also for non-disabled people, blind people, deaf people. For me everyone is equal.”

(wheelchair user in Sucre)

Cuando se trata de los pobres, no hay cabida para ellos...Si necesitan hacer un aeropuerto, de una manera u otra el gobierno encuentra el dinero. Pero cuando se trata de los pobres no hay... El gobierno dice que ayuda a los pobres pero la realidad es otra. Los gobiernos hacen cosas grandes...Las personas que estan en el poder necesitan incentivos para ver las personas pobres...los gobierons quieren publicidad despues de hacer algun trabajo, pero no...reciben nada por ayudar a adultos que ya han sido abandonados. A nadie le importan estas personas. Los mas pobres no se quejan…los que mas necesitan son los que menos hablan.”
When the issue is poor people there is no space for them... If an airport is needed, in one way or another the government will find the money. But when the issue is poor people there is no money...The government says it is helping poor people but the reality is different. Governments do big things... people in power need incentives to see poor people ... governments want publicity after they have done some work, but they don’t receive anything for working with adults who have already been abandoned. Nobody is bothered about these people. The poorest people don’t complain...those most in need are those who speak least.”

(Director of church institution for people who have been abandoned)

List of abbreviations
Executive summary
1. Introduction

1.1 Background

1.2 Disability Context

1 3 Definition

1.4 Objectives

1.5 Methodology

1.5.1 Methodological difficulties
2. Results - Priorities from focus groups of disabled people

2.1 Existing situation and priorities to change

2.2 Discrimination

2.3 Work and employment

2.3.1 General employment situation

2.3.2 Employment in national government

2.3.3 Employment in public organisations and local government

2.3.4 Employment in non-governmental organisations working on disability issues

2.3.5 Employment in mainstream NGOs

2.3.6 Employment in commercial enterprises

2.4 Education and training

2.4.1 Schooling

2.4.2 Adult education and training

2.5 Basic needs

2.6 Health care

2.7 Transport

2.8 Attitudes and perceptions of disability

2.9 Architectural barriers

3. Results – Priorities from interviews of non-disabled people

3.1 Rehabilitation

3.2 Prevention

3.3 Attitudes of families

4. Issues specific to certain groups

4.1 Rural areas

4.2 Parents of disabled children
5. Who represents who? Roles and responsibilities of organisations that currently claim to support disabled people.

5.1 Who represents who?

5.2 Associations and federations of disabled people

5.3 Organisations for disabled people

5.3.1 Conalpedis and Codepedis

5.3.2 NGOs

5.3.3 Other institutions

5.4 Government and political parties

5.5 Social movements
6. Wider Issues that also affect disabled people

6.1 Migration

6.2 Climate change

6.3 Water

6.4 Mining

6.5 Unemployment

6.6 Poverty

7. Possible solutions

8. Recommendations and conclusions
Annex 1: List of participants – focus groups and interviews

Annex 2: Major developments in the disability movement in Bolivia

Annex 3: Topic guide for focus groups

Annex 4: Example topic guide for interviews

Annex 5: Photographic illustrations.

Cobopdi - Confederacion Boliviana de personas con discapacidad / The Bolivian confederation of disabled people.

Codepedis - Comite departamental de personas con discapacidad / Departmental committee of disabled people.

Conalpedis - Comite nacional de personas con discapacidad / National committee of disabled people.

CSUTCB - Confederación Sindical Única de Trabajadores Campesinos de Bolivia

DfID - British government Department for International Development

IS - International Service

NGO - Non-governmental organisation

PNIEO - Plan Nacional de Igualdad de Equiparacion de Oportunidades para las Personas Con Discapacidad / National plan for equalising opportunities for disabled people.

RIC – Rehabilitacion Integrada en la Comunidad / Rehabilitation integrated in the community

UNDP - United Nations Development Programme

The research was funded by DfID, International Service, Wales Arts International and Sense International.
It was initiated by a team of 2 people from the British based NGO, International Service (IS), 1 from the Comite nacional de personas con discapacidad (Conalpedis) and 1 from the Comite departamental de personas con discapacidad (Codepedis). Two people from Sense International joined this group at a later stage. The research itself, including the mural process, was carried out by 2 British employees of International Service.
We are grateful to the many individuals and organisations that took part in this research, freely giving their time and thought to the issues involved. Many of the disabled people who took part described huge difficulties and injustice in their lives. Many also described their continual battle to challenge this situation. We hope this report does justice to their struggle and contributes in any small way to building a more just society for all.

Executive summary
This study was designed to identify the needs and demands of disabled women, men and children; to discover the nature of current initiatives in the area of disability and to prioritise areas of intervention. More detailed objectives are set out in section 1.4.
This qualitative research was conducted in: Sucre, Tupiza, Santa Cruz and the province of Ingavi. The intention was to work with focus groups of disabled people living in as wide a range of situations as possible, not to obtain statistically representative samples. The use of figures and percentages is deliberately minimised in order to avoid giving a misleading impression of statistical validity. Interviews were conducted with representatives of NGOs, local and national authorities, largely depending on the priorities and suggestions made by disabled people in focus groups. Twenty-three focus groups and fifty-seven interviews were conducted and several meetings attended. See section 1.5 for an explanation of methodological issues and difficulties. A full list of focus groups and interviews is included in annex 1.
The priorities expressed by disabled people are described in section 2, followed by some different priorities expressed by other interviewees. There was frequently a large divide between the two. Disabled people in every focus group talked of discrimination as the over-riding issue, giving examples of exclusion from employment, education, training, transport and health services. In rural areas disabled people talked of their priorities as being basic needs such as food, clothing and shelter. In other places disabled people talked of having no choice but to search through people’s rubbish or to beg in order to survive. Meanwhile many non-governmental and governmental organisations focused on issues such as rehabilitation, prevention of impairments and the need to count numbers of disabled people. This is not to imply there was no overlap between the priorities of disabled people and the perceptions of non-disabled interviewees. Some disabled people did talk of the need for rehabilitation and some non-disabled people did talk of the problems of discrimination. But the over-riding emphasis was quite different.
Many organisations for, but not of, disabled people claimed a representative role. The issue of who really represents who is considered is section 5. The different role of organisations for and of disabled people is given further attention.
Several difficulties described by disabled people also apply to wider sections of society. Some of these issues are outlined in section 6. It is clear from this research that these issues cannot be solved in isolation from tackling wider concerns
Participants of focus groups suggested possible solutions to the difficulties currently experienced. These are outlined in section 7, followed by the researcher’s conclusions and recommendations in section 8. The main recommendations can be summarised as:
1. Disability issues cannot be tackled in isolation.

  1. Focus should be on the priorities expressed by disabled people themselves not by intermediaries.

  2. Non-governmental and governmental organisations must set an example by employing disabled people on an equal basis.

  3. NGOs should offer direct funding to organisations of disabled people.

  4. All those involved in working for disability equality should be aware of distractions offered by those currently holding power whether in non-governmental or governmental positions.

6. We should not give up hope of changing the system.
It was found that several governmental and non-governmental organisations are currently running projects on behalf of disabled people. However, little of this work is led by disabled people, or based on a strategic analysis of disabled people’s needs and priorities. The primary conclusion from this work is that whilst many organisations currently claim to work on behalf of disabled people, many of their actions actually distract from the fundamental changes that need to take place if the systematic discrimination is to be addressed. When an organisation says it includes or prioritises disability this should not be automatically welcomed. The most essential need would appear to be to build a disability movement strong enough to bring about the changes that disabled people themselves prioritise.
Employment of disabled people within organisations with funding to work on their behalf was found to be extremely low. Many, even of those NGOs specifically set up to work with disabled people, did not employ a single disabled person themselves. This calls into question the credibility of claims to focus on the capabilities of disabled people. Several interviewees attempted to justify lack of employment of disabled people by stressing the need for experts. The all-pervasive assumption was that disabled people cannot be experts despite having 24 hour a day experience of disability and despite many being fully qualified and experienced in a profession prior to becoming disabled.
While many organisations for disabled people were found to have substantial sources of international and national funding, many organisations of disabled people do not even have a place to meet. The anger expressed towards the work of NGOs was widespread. Disabled people and some NGO members of staff (insisting on anonymity) repeatedly talked of NGOs taking advantage of disabled people, making money out of disability, or being here in order to maintain the status quo. When one disability leader was asked why he thought so many NGOs work with disabled children and so few with adults, he replied, with no hesitation: “because children do not demand their rights, they are easier to take advantage of.”
There are some suggested tasks for NGOs that emerge from this research. One disability leader talked of the need to revise the law on disability, and of how useful it would be to exchange ideas with disabled people in other parts of the world with similar experiences. Within Bolivia, there is a desperate need for Sign language teachers particularly in more rural areas. There are also many unemployed deaf people who know Sign language, generally in urban areas, and could become teachers if given the opportunities. Similarly many blind people in rural areas complained that there was no-one to teach them Braille, whilst other blind people, predominantly in urban areas know Braille but are unemployed. Parents of deafblind people talked of wanting to become teachers themselves in order to offer their children better opportunities. They would be motivated by their personal experiences, so it would be likely that the present rapid staff turnover would be reduced. Disabled people’s organisations need funding for meeting places, office equipment, and transport to enable members to come to meetings. NGOs could usefully fund these things and so contribute to putting more power in the hands of disabled people themselves.
The focus groups and interviews in this research were complemented by the work of a community artist, who worked with disabled people to put their main messages into pictorial form and combine the ideas into a mural in each main location. Official opening ceremonies were held as the murals were completed, at which local authorities, NGOs, the media and members of the public listened to disabled people describe the messages portrayed. Photographs of these murals are included in Annex 5 to illustrate the priorities expressed by disabled people.
1. Introduction

1.1 Background

This research was conducted in Bolivia from April to December 2006 during the first year of Evo Morales Ayma's term as the first indigenous President of the country. It was a time of great social change and uncertainty, as has been much of Bolivia’s recent history:

  • May 1st - nationalisation of the country’s gas supplies was announced;

  • July 2nd - elections for the assembly that would re-write the constitution. The Movimiento al Socialismo (MAS) won an absolute majority but not the 2/3 necessary to pass changes to the constitution alone. A referendum on autonomy was held on the same day in which, broadly speaking, eastern more prosperous departments voted for autonomy, and the western departments voted against it;

  • July - congress to discuss educational reform. A proposed bill to transform what the education minister refers to as a neo-colonial system into one where children learn about indigenous culture in their own languages, led to protests and the congress collapsed.

  • Plan nacional de desarrollo / national development plan;

  • August 6th - Bolivian independence day, inauguration of the new constituent assembly;

  • October - there was unrest at the Huanuni mine between workers of the cooperative and those of the state company. The army was called in and many people were killed;

  • December - the Agrarian Reform Act was passed after indigenous people had marched for weeks from different parts of the country to lobby congress in La Paz;

  • December saw over 1000 people on hunger strike to call for the government to respect the original 2/3 majority needed to pass any change to the constitution. The government was proposing to allow an absolute majority to pass any stage of the reform, but with a 2/3 majority or a national referendum needed to pass final changes.

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