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First Disability Survey in Guatemala

Editor's Note: The following article is reprinted from Disability World, Issue No. 24, June-August 2004.

The efforts to quantify and characterize persons with disabilities have been minimum in Guatemala; this has translated into an under-estimation of the number and the severity of the conditions that persons with disabilities have confronted and still have to confront.

Though some questions regarding persons with disabilities have been included on the last three National Censuses, the information obtained is insufficient, very variable, and conflicting with respect to data from the World Health Organization (WHO).

In 1994, the National Population Census, conducted by the National Statistics Institute, estimated the population of Guatemala as 8,331,874 inhabitants, of which 59,841 (0.72%) present some type of disability. The reported number of persons with disabilities in Guatemala is much lower than the corresponding 10% estimated by the WHO.

In 2002, the same agency conducted a National Census, including only one question regarding disability in the household section. The purpose of that question was to determine whether there was at least one person with disability living in the households surveyed. Of the 2,200,608 households surveyed in 2002, an estimated 6.2% reported at least one person with disability at home. Yet, these data are not sufficient to determine the exact number of persons with disabilities in the country, much less what conditions affect their lives, what their needs are, and their social and labour situations.

The Importance of Statistical Information

The quantitative and qualitative statistical data which may be obtained regarding persons with disabilities are necessary for an adequate designing of policies, programs, and plans for the attention and inclusion of this population in the political, social, economic and cultural participation levels of society.

It is evident that there is an urgent need for these statistics. The organizations of and for persons with disabilities have told pertinent authorities about the importance of information gathering instruments and their periodic use. But until recently there had not been a favourable response, not even from the National Council for Attention to Persons with Disabilities (Consejo Nacional Para la Atencion de Personas con Discapacidad, CONADI). This situation reflects the lack of interest on the part of government authorities in including persons with disabilities on the human rights agenda.

The First Survey

Finally, after a long lobbying process and the strong interest of the Inter-American Development Bank, for the first time in the history of Guatemala a national survey on the situation of persons with disabilities is being conducted. This survey is one of the components of the main project of the Presidential Secretariat of Social Welfare (Secretarian de Bienestar Social de la Presidencia). The project is part of the goals of the Millennium Summit of the United Nations and the Inter-American Development Bank in the region: reduction of poverty, in this case, by conducting actions to benefit the population with disabilities.

It is important to know the background for such a project before analyzing the objectives and results expected, even by disability-related organizations, from this survey on the situation of persons with disabilities. We must remember that the project of the Inter-American Development Bank aims to foster poverty reduction programs. That survey has been designed to determine, mainly, what is the social and economical situation of persons with disabilities, among those identified at the 2002 National Census.

The survey will provide information on: housing and household conditions, level and type of academic achievement, type of disability, health and rehabilitation service used or being used, employment status and income. One of the major expectations of the disability sector, with respect to information gathering, is that there would be more relevant information available regarding deficiencies and personal characteristics. But it seems that we will be deceived again.

Another of the weaknesses of this survey process is the lack of participation provided for the organizations of and for persons with disabilities. Very few people know that this instrument will be used. And, since persons with disabilities were not included during its elaboration, the disability movement was really excluded from having an impact on the content and the scope of the survey.

Providing Follow Up for the Inclusion of Persons with Disabilities

Due to the problems identified, the disability movement must be supportive and take action regarding this project. Some of the measures that could be adopted to compensate for eventual deficiencies:

1) Start a direct dialogue with the authorities and the government agency in charge of the survey.

2) There must be an effective effort to inform the general population, particularly persons with disabilities, regarding the survey and its importance, the need for people to cooperate by providing the required data.

3) The movement of persons with disabilities must follow up and monitor the process and its results. This to ensure that the proper public policies, programs, and projects will be put into practice to improve the lives of persons with disabilities.

4) Increase the participation of the organizations of and for persons with disabilities in conducting the national survey, aim at a wider coverage and objectives, quantify and define the characteristics of this population on a continued basis.

This is just one first step of many that must be taken in order to achieve full inclusion of persons with disability within the policies and programs of the State. We will be waiting in expectation the results of this first national disability survey in Guatemala.