Interview: Silvia Quan, Disability Rights Advocate of Guatemala

Silvia Quan is a high profile woman and the current Advocate of the Persons with Disabilities with the Guatemalan Office of the Procurator for Human Rights (Procuraduría de Derechos Humanos). In an interview for DisabilityWorld, she told us: "I proudly identify myself as a woman with disabilities, first, then as a person with disabilities...a subject of rights and not an object of pity, of medical or psychological treatment. I am a woman who acquired disability at adult age, about 23 or 25 years ago. Because my visual deficiency began to advance progressively early in my adolescent years, I also acquired my identity as a person with a disability in a progressive manner. It was a slow process, with very hard moments together with my family and friends... I remember those time with satisfaction since I never lost my personal dignity."

She majored in chemistry and is passionate for mathematics: "It sounds like a paradox and very strange, until people know me, they often think I am a psychologist, lawyer, or sociologist."

"I live my life, fighting everyday, as a woman, a feminist, and a woman with disabilities. Feminism has taught me a lot and, perhaps the most important aspect is that I am an independent person, with my dignity, opinions, and the ability to follow my own criteria. I have become aware that nobody, with or without a disability, whether man or women, is entitled to make me less worthy. As a woman with a disability, and I would like to underline this fact, I had to fight within the movement of persons with disabilities. We are only few-- women with disabilities who have had the opportunities to learn, reflect, and evaluate our condition with respect to gender and disability."

Last October Silvia became a reporter for DisabilityWorld. This conversation is our way of introducing her to our readers and of having another opportunity of knowing about her thoughts on the situation of persons with disabilities in her country, about her life, struggles, and dreams.

Disability World: What percentage of the national population of Guatemala has a disability?

That question is very difficult to answer. There are no reliable data regarding the number of persons with disabilities in Guatemala. Efforts to gather quantitative and qualitative data about persons with disabilities during the national census were not very effective. For example, the last Guatemalan National Census, conducted in 2002, did not include the possibility to obtain information regarding the type and distribution of persons with disabilities in the country. It just had one single question asked to the families in order to determine if there was a member with disability in the family. The responses are used to determine how many households have a member with a disabilities. On the other hand, based on figures from the World Health Organization and the Inter-American Development Bank, the National Council on Disability estimates that 12% of the Guatemalan population has a disability

DW: Guatemala has the highest percentage of indigenous population in Central America. What are the main types of disabilities among this population?

We do not have reliable information regarding disability among the general population of Guatemala, much less about what is the situation of persons with disabilities from the indigenous groups. Unfortunately, as it is still happens in most countries, in Guatemala the indigenous population is excluded from government policies. The 2002 Census did not explore sufficiently the immense diversity presented by the indigenous groups of Guatemala. Even among persons with disabilities working in the field of disability rights, the situation of these groups is not being considered. This is regretful because the indigenous population represents more than 60% of the population of Guatemala.

One of the principal weaknesses of the movement of persons with disabilities is that we have not established an adequate coordination with other social movements, such as with human rights, women, or indigenous groups.

DW: What is the general situation of persons with disabilities in Guatemala?

I will try to answer this question, just keep in mind what we have mentioned about the lack of reliable information on the situation of persons with disabilities. My personal opinion is that there is an emerging, yet still weak, movement of persons with disabilities. There are few organizations of persons with disabilities and not much participation.

I believe that is the main reason why the situation of persons with disabilities is so precarious, hidden, and of little or no interest for the corresponding authorities in our country. There is still "assistentialism", the traditional medical and biological approach toward disability, thereby persons are being treated as objects of charity and help.

DW: The Index of Human Development in Guatemala is relatively low, how does it affect the situation of persons with disabilities?

Something important about the Index of Human Development is that it is an average of the total population. If this Index locates Guatemala among the lowest income generating countries of Latin America, it indicates that the majority of the population is struggling under bad living conditions. We must remember that the higher indexes are the ones that raise the general averages. In general, the situation of persons with disabilities does reflect lower conditions as compared with the Human Development Index for the total population. This is particularly true with respect to measurable access to health, education, and employment, which are still lower than acceptable regarding persons with disabilities. Those of us working in the field of disability know that low living conditions and disability interact as a vicious circle: The bad health services are a cause of disability, the low literacy index causes disability, and when there is zero access to employment, it means low or no family income, hunger or malnutrition, and poor quality of living. You do not need to do much research to find out that we are the extreme cases of the curve when it comes to making calculations for the Human Development Index.

DW: When was the specific law to protect and promote the human rights and the quality of life of persons with disabilities in Guatemala enacted and what does it cover?

In November 1996, the Congress of Guatemala, by Decree No. 135-96, approved the Law for Integral Attention to Persons with Disabilities. This law provides for the protection of social, economic, and cultural rights, with specific chapters on accessibility (physical space, transportation, communication, and information). The civil and political rights are not mentioned in the Decree 135-96, because they are guaranteed in the Guatemalan Constitution.

As one of the important results of the promulgation of that law, the National Council for the Integrated Attention of Persons with Disabilities (Consejo Nacional para la Atención a las Personas con Discapacidad, CONADI), as the national agency responsible for promoting disability policy in our country. We still have to work a lot to make effective changes pursuant to the law, to strengthen the operation of the National Council, and to ensure that more persons with disabilities know about this law.

The Inter-American Convention on the Elimination of all Forms of Discrimination Against Persons with Disabilities was approved, in Antigua, Guatemala, by the Organization of American States, 1999. What has been the impact of that event regarding the quality of life of persons with disabilities in your country?

To begin with, the ratification of this Convention was not as immediate as we wanted. In fact it was ratified on January 2003, four years after its approval by the General Assembly of the Organization of American States. The sad part about the ratification process is that in general persons with disabilities did not know that it was taking place, do not know that it was ratified, and so are not aware of any impact. I am very worried that so few persons with disabilities are providing follow-up to this process and trying to effect compliance with its requirements within our society.

DW: What public institution is responsible for the follow-up and ensuring compliance with the disability legislation in your country? What is the role of the non-governmental organizations in those institutions?

The National Council is appointed by law to assume this important responsibility, yet no institution is doing so in a practical manner. Of course you have the Guatemala Office of Human Rights Procurator (Procuraduría de los Derechos Humanos). This agency has direct connection with the non-governmental organizations, and some work is conducted in training and follow up of cases regarding protection and violations of disability rights.

The National Council on Disability is an institution composed of public entities and private agencies from civil society, yet there are very few organizations of persons with disabilities included and, most of them do not have the political skills or enough resources to enforce effective changes, therefore have to rely on mediation efforts by charitable organizations. The Council was founded on sound objectives and has relevant functions to perform. The problem is that the organizations representing persons with disabilities do not have power to make changes or even express their opinions. There is a need to introduce structural changes in this Council, to make it inclusive, because it does not respect the principle of Independent Living for persons with disabilities.

DW: What is the level of development of the movement of persons with disabilities in Guatemala?

We have very few organizations of persons with disabilities and they do not have many members. Perhaps the associations with more members and politically more active are those formed by people who acquired disability from armed conflicts. They are organized throughout different parts of the national territory, while the organizations of other specific disabilities usually do their work in the main cities. Though still weak and difficult, because of lack or resources and hard to reach communities, the National Council is improving coordination and communication among all the organizations of persons with disabilities. We are strengthening the movement of persons with disabilities.

DW: What are the current perspectives of the movement of persons with disabilities in your country?

I feel that, little by little, persons with disabilities are expanding their participation and political roles. There are sports, self-help groups, like the Christian Fraternity of people with Disabilities, and other organizations. All of them are aware about the need to make changes, the need for them to participate, promote more training and increase local participation. The development of the disability movement in Guatemala has followed the movement of democracy in our country. It is recent and the democratic experience of our nation is still weak and incipient.

DW: What is the position of the government of Guatemala regarding the proposed UN International Convention on the Rights of Persons with Disabilities?

Right now, I have to say that there is none. The official participation was assumed by Demetrio Vargas, a member of the Guatemalan Association of Persons with Disabilities (Asociación Guatemalteca de Personas con Discapacidad Manuel Tot). Demetrio has played a positive role but the Ministry of Foreign affairs has not expressed its official position. This reflects the traditional attitude toward persons with disabilities: a lack of interest on the part of the government authorities. Whereas for us, the people with disabilities, the UN International Convention is vital, particularly in our country where human rights issues have not being undertaken in a serious and responsible manner, including the rights of persons with disabilities.

On the other hand, the members of the National Council (which we could consider as being part of the government), formed a Human Rights Commission, as mentioned to you previously, taken a position of full support to the UN International Convention. Now we are trying to get the Ministry of Foreign Affairs to deliver our proposals, through Ambassador Rosenthal, Head of the Guatemalan Mission to the United Nations, to the Ad hoc Committee working on the Convention process.

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