Guatemala: Leadership and Representation, a Challenge for the Organizations of Persons with Disabilities

So far, the development of the organizations of persons with disabilities in Guatemala has not achieved the necessary level of visibility and impact needed to bring disability higher on the national agenda of the government and institutions.

Instead of using their own organizations to foster change, persons with disabilities in Guatemala still depend on intermediary nondisabled agents, like the medical model or social assistance. The activity of organizations controlled fully by women and men with disabilities is just beginning in our country. Progress will depend largely on the disability leaders themselves. That is, how much impact do they want to have on the social, economic, and political conditions that affect all of us?

They can promote through their organizations the changes they need, building influence on national plans, on the development of public policies, programs, and actions that will eventually improve the living conditions of this traditionally and structurally excluded sector.

The weaknesses diagnosed

The social movement of persons with disabilities has acquired some cohesion and coordination, but weaknesses that limit its strengths have been detected. One is the lack of stronger and representative proposals by disability leaders capable of impacting the government and the State.

Here in Guatemala, the Decree 135-96, Law for the Attention of Persons with Disabilities, created the National Council of Persons with Disabilities, as the national agency in charge of promoting and assuring the implementation of disability policies, plans and programs at a national level.

Half of the members of this National Council represent the public sector and the other half the organizations of and for persons with disabilities. The majority of the organizations of persons with disabilities only have a "formal" representation within the National Council.

The other problem deals with marked and diverging interests between the public sector and the private sector. This situation limits the capacity for individual members to introduce projects or opinions on proposals being studied. Many of the representatives from the organizations of persons with disabilities do not have sufficient social skills or training to discuss or confront the professionals and technicians from the public sector and the institutions. Many of these institutions operate under traditional assistance models. So they limit the role that should be played by the representatives of the organizations of persons with disabilities.

There are a few persons with disabilities who are developing active roles, separating themselves from "being assisted and conducted". These persons are now participating in political spaces where decisions regarding resources for the population are made. This type of participation must be fostered and extended with the support of the organizations of persons with disabilities and other excluded sectors struggling with similar types of obstacles to inclusion

Participation in the public administration

In Guatemala, the experience with very large multi-sector councils is that very soon they become bureaucracies. The National Council is no exception. A rapid reading of their financial resources indicates that it uses about 70% of its budget for management related costs, and only a very small part is destined to be invested in organizations of persons with disabilities or for projects to improve the living conditions of the population with disabilities.

These councils could be positive agencies if the organizations of persons with disabilities were more strengthened and received training regarding a more inclusive and effective way of doing political actions. We have leaders, but they are not multipliers. So there is like a concentration of information, a monopoly of responsibilities and opportunities. This concentration of leadership limits the growth of other members of the organizations. These negative conditions hinder the possibilities of organizations to promote better national disability policies.

The process of organization

In Guatemala, the organizations of persons with disabilities have begun a unification and reflection process on ways to improve their social, political, and economical impact. We believe that critical analysis, information, and training are aspects that have had to be treated separately , because they are not convenient to the interests of members of the public sector or the traditional institutions.

There is a need for discussing and analyzing aspects like representation and legitimacy of the leaders of the organizations of persons with disabilities in the National Council, and other national and international organizations. This reflection must generate a debate leading to more democratic processes for electing new leaders with a human rights perspective and respect for diversity.

Some organizations want to debate the topics of representation and legitimacy regarding who should represent persons with disabilities and their organization at the national and international levels. In order for democracy to work at all levels in Guatemala, there must be a process by which persons with disabilities are able to elect their representatives. The process should allow the inclusion of diverse proposals and perspectives from the existing organizations of persons with disabilities. There must be dignity in the official representation of Guatemalan persons with disabilities.

Organizations of persons with disabilities need political training, and skills for developing strategies and relevant proposals. There is also the need of stressing the importance of unity and coordination in the edification of the social movement of persons with disabilities. And also the notion that we must act together with other sectors of the civil society that are also struggling for respect and vindication of their human rights.

The growth of new organizations of persons with disabilities in Guatemala will also be determined by the dispersion of the population with disabilities, there will be small local organizations that need to coordinate with larger groups.

It is important to mention that important efforts are been undertaken, like the functioning of the first organization of women with disabilities. This is part of a movement of women organizing for their specific vindications.

Even for leaders with a clear perspective of independent living and political clarity about human rights, the process of collective reflection on the unity of these organizations is not an easy task.

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