When invisibility is not a superpower: Mexicans with intellectual disability struggling for the guarantee of their rights
How to make some people invisible.
Some days ago, there was a guy lying down by the subway entrance near my work place. It had been cold and rainy and he had been there at all times. He seemed to be very sick. Thousands of people pass by everyday and the Federal Ministry of Public Security (National Police) also has its headquarters nearby. I made some calls and no one agreed to provide any help. They will most probably come if there is need of removing the corpse. You may wonder why I did not take matters on my own hands if I was concerned. I have learned where my limits are and I did what I could at the moment.
Yes, sadly I live in a country where football or politics move multitudes; but other human concerns do not strike with the same resonance. It is not unusual that persons with intellectual disabilities are neglected, abused, and/or ignored. Most of them are invisible before the eyes of many. People with intellectual disabilities are at the lowest on the scale of social and governmental importance. We almost never see them as regular people, but rather as defective. People with intellectual disabilities are supposed to be those who have any condition that includes a lifelong impairment to a person’s ability to learn or adapt to their environment.
Cases like I just described above are part of the regular landscape. You have three choices: be outraged and do something that will change the situation; give the person a coin and think you did good; or, assume they are invisible. Most Mexicans opt for the third choice. You may accidentally bump into some of them; but you just have to pretend they are not there, as if they were not Mexicans; as if they were not fellow human beings.
How many make an invisible number?: stats and current situation.
There is not an accurate assessment of the number of people with disabilities in Mexico. The 2010 National Census reports 5.1% of the population (5,739,270 people). However, the 2011 Comprehensive Initial Report Taken in order to meet the obligations of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) reports a probability of 9% of people with disabilities. In an alternative report some organizations estimated a higher number and stressed that the government should at least consider a probability of 10% of the population as the World Health Organization has estimated. Although, specialists and other international organizations insist there may be at least 15 % of the population and the number might increase as a result of drugs, obesity and diabetes. Estimates of the number of people with intellectual disabilities range from 8.5% to 20% out of the total population of people with with disabilities.
According to Disability Rights International, the Mexican Government has no registry of how many people with disabilities are confined in psychiatric hospitals and other institutions. Moreover, they have also condemned the exacerbated violations of human rights in health institutions noting that improvements have not been made in the last decade. Ethnic cleansing, human trafficking, banishing, slavery and forced imprisonment are some of the abuses suffered “…I was born in hell…it scares me I’ll be here forever” An eight year old with intellectual disabilities living in a orphanage asserts. “There is not a registry of the children sent to institutions…no clue”. A public official acknowledges.
In 2010, only 4% of people with disabilities have a university education, 32.9% of them are illiterate. On average women only have half of the educational opportunities of men. Also, just 30% of people with disabilities have a full time job. In the 2011 National Discrimination Survey, 27.5% of people with disabilities think their main problem is unemployment; 20.4% think it is discrimination.
A new paradigm to approach disability: persons with disabilities are just persons.
Under the UNCRPD, disability is not a physical condition or illness; but an “evolving concept in which disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others”. Thus, disability becomes matter of social concern instead of an individual and physical condition. For example, a person with an intellectual disability may not be not considered disabled in Switzerland because he might carry on with his education, job, social life, etc; but in Mexico, he would not have many chances to enjoy a regular life.
One of the most innovative contributions of the UNCRPD is the call for equal recognition before the law. This certainly challenges the society’s traditional denial of legal capacity and the overprotective social beliefs for people with intellectual disabilities. Article 12 of the UNCRPD asserts that persons with disabilities should enjoy legal capacity on an equal basis with others in all aspects of life. They also have the same rights to recognition everywhere as persons before the law. The UNCRPD suggests the adoption of appropriate and effective safeguards proportional to the degree to which such measures affect the person’s rights and interests. As a result, all people are entitled to enjoy social and financial inclusion. However, people with intellectual, mental and psychosocial disabilities have status of children before the Mexican laws under a guardianship legal schema. Not having legal capacity denies all human rights per se.
Being invisible is not longer a choice: Self advocating agents.
“Nothing about us without us” is the UNCRPD’s motto. It implies the principle of full participation and equality of opportunities. It also empowers and entitles people with disabilities to become self advocating agents for their own rights. Many disabled peoples organizations and international organizations advocate training for a better understanding of their rights and better addressing of their demands and concerns. Luis Fernando Astorga, a participant in the UNCRPD’s negotiations affirms: “they saw us as weak … and thought: they are harmless. Let them in!… Once there we showed our strength…they couldn´t take us out. Right there we started to be visible”.
Carmen Suarez -honorary president of CAPYS (Center for Personal and Social Training) People First; a young football player; and, full time receptionist at an international corporation- is one of the best examples of self advocating agents in Mexico. She told me, “I did not know I was a person with an intellectual disability until people denied me the right to make my own decisions. Then, I became aware of the urge to defend myself and speak for those who are voiceless. I have superpowers for public speaking! People listen to me; so I must make sense and know and understand my rights by heart. Being a self advocating agent embraces an enormous responsibility too. Your duty goes far beyond just lecturing about human rights, you must take action too. You have to be part of the change you want to see”.
Suarez also acknowledges her family has encouraged her to fight for her rights; but she admits she is one of the very few lucky ones. Carmen asseverates if unfair laws are difficult to assert for regular people, “just imagine the challenge they mean for people with disabilities”. Carmen’s demand for the guarantee of her rights has not been an easy task. Once she tried to deliver her concerns to the National Congress. “They wanted to block me. That made me so angry! The anger made me feel powerful! Even if I´m a young women with an intellectual disability I deserve to be heard. I speak on behalf of millions of fellow women”.
Carmen dreams of a Mexico more inclusive and aware of the rights of people in vulnerable situations, especially women and girls. “I have been discriminated against so many times, sadly enough mostly by women. Regular people and the government do not want to recognize my rights as person, as a woman, as Mexican”. She thinks we need more spaces and programs to support women with intellectual disabilities. “Many of them are very afraid to speak up about what they are going through and to ask for help. I´m a brave woman because I have had CAPYS, my family, my boyfriend and friends; but so many women and girls with intellectual disabilities are alone”.
One day, Carmen hopes she will not depend on others to live her life. “We all, people with intellectual disabilities or not, make mistakes. I might need some extra help to make my own choices, but I can make them. I know and keep learning what is and is not good for me”. Carmen is referring to her legal capacity and the rights conferred in Article 12 of the UNCRPD that can be exercised by assisted decision-making. Carmen thinks she offers hope for the future recognition of people with intellectual disabilities as equal before the Mexican Laws.
A long path towards the recognition and guarantee of rights.
At the beginning of this article I described a passage of any given day in Mexico. The 2011 National Discrimination Survey showed 48% of children would not want to live with a person with a disability. If this is how our children feel, no wonder we adults have such indifference for other people. Paradoxically, the Mexican civil society was one of the champions for the UNCRPD’s adoption.
However, neither the reform of local Mexican laws in compliance with the UNCRPD; nor, the existence of a fervent few human right activists will change the spiteful reality. What is to be done then? First, the Mexican government must implement programs that promote the guarantee of legal capacity for people with disabilities emphasizing children and the indigenous. Rights are empty words without legal recognition. Also, the government must accept the severe observations of several organizations such as Disability Rights International and the Mexican Commission for the Defense and Promotion of Human Rights. Second, disabled peoples organizations must embrace the new disability paradigm and promote its spreading and understanding. Third, people with disabilities must assume their responsibility to be agents of change and not only of concern; they have to learn their rights, demand their safeguard and contribute to the betterment of their societies. They must embrace this battle against invisibility on their own. Carmen’s example shows us it is possible. “If I want to enjoy my rights, I have to assume my responsibilities first”.
Will I wait until I’m invisible?
Even if we are some people advocating for people with disabilities’ rights; we are still not enough. Recently an old man was abandoned downtown in the middle of the night. Next morning he was found dead in his wheel chair. How do we allow it to happen? What kind of society are we? Why do we keep pretending there are some invisible people? Why do football and politics unite and inspire us, but not human pain? What guarantee do we have that we would never become this invisible ourselves? What are we doing as citizens to put pressure on the government? What are we doing at home to teach our children we all are just people equally deserving of respect, rights and empathy? This is how it feels to be Mexican. Shame on us!!!
While Spain elects its first municipal counselor with Down syndrome; in Mexico we deny legal capacity and rights to people with intellectual disabilities. There is just one case now being fought in federal courts. Ricardo Adair Coronel Robles, another self advocating agent, is demanding to be recognized as adult. This is the first case in Latin America. If Ricardo wins the case, it will establish a legal precedent for millions of people. Even if he wins the hardest part will be to make it accepted by all Mexicans. We will have to assume the commitment to recognize him as Ricardo: somebody who has the right, as we all do, to make mistakes and learn from them.
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This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous digital media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.