Plenary Guardianship: Persons with Disabilities Made Vulnerable

By Roger Bill


It’s been over 2 months now since I’ve arrived in the Federal District of Mexico. The cultural shocks come less and less, my skin doesn’t burn so easily, I don’t mind the altitude when I run, and the chilangismos (local slang) roll easily off my tongue. As settled in as I feel, I’m often startled in my work by the large divide between the law on paper, and the reality in the streets.

In the day to day, this reality would be evident to any Canadian visitor like me, not just those working in human rights. Traffic laws are a great example. There are laws on the books, but what matters is what the other motorists are doing, not what colour the lights are. For example, I had a lively cab driver a couple of weeks ago. He was happy to be taking me and two friends across town for a decent fare. So, when a police officer pulled him over for running a red light and was at his window telling him he had to pay a fine and leave us to find another cab, what mattered was how quickly he could leave the police car in his tracks, not the picture of his car caught by the traffic camera.

After an adventurous flight from the police with my aggressive cabbie, I realized that what holds for cabbies holds for people with disabilities: there are laws on the books, but people will do what they can get away with.

Unfortunately for people with disabilities, the people bending the rules are their legal representatives, or public servants who don’t want to make reasonable accommodations for them, or administrators of psychiatric institutions where they are indefinitely detained.

A large part of my work in the first month of my arrival was creating this year’s Zero Project Report, a study of the implementation of the UN Convention on the Rights of People with Disabilities (CRPD). The study examines not only what legislative changes have been made in Mexico to bring the law in line with the convention, but what the practical reality of the implementation of the convention is. Sadly, the reality usually falls well short of the laudable goals and aspirational language of recent legislative reforms.

Disability Rights International advocates for the rights of people with disabilities, and particularly tries to attain the ideals promised by article 19 of the CRPD: to have people live inclusively in the community rather than in isolated institutions where they suffer abuse. The organization fights to have the reality of institutions mirror the rights guaranteed by law. This is a laudable goal and I’m very happy to participate in it through our different advocacy initiatives.

Currently we are trying to end institutional abuse in a Central American psychiatric hospital through motions before the Inter-American Commission of Human Rights. The abuse is terrible: people administered therapy without their consent, others locked up for life with no possibility to review their status and live again in the community, sexual abuse, human trafficking, and horrendous living conditions. We hope to stop the terrible abuse perpetrated by the institution. However, bringing about de-institutionalization is no mean feat. Realistically things won’t change overnight, and people with disabilities can do little to help themselves when they are locked up in psychiatric wards in deplorable conditions.

So, I’m very happy to be participating in a project to empower people with disabilities and give them the tools to change the situation in the hallways of hospitals. Along with pressuring the government to improve conditions and offer community service as DRI constantly does, we are attempting to reform the laws of legal capacity in Mexico so that people with disabilities can have more control over how they live their lives.

DRI is part of a working group composed of the National Council for the Development and Inclusion of People with Disabilities (CONADIS), Rehabilitation International, several strategic litigation firms which specialize in disability rights, and other invited experts. The project aims to propose amendments to the civil code of the Federal District, as well as proposing a draft legislation creating a supported decision making scheme. Through these two changes, we hope to create a strong example for the other Mexican states to follow. It is a monumental task, and our proposal may not get adopted on its first pass in the national assembly, but it is step in the right direction.

A report by the Secretary General of the UN on the progress of efforts to ensure the full recognition and enjoyment of the human rights of persons with disabilities [A/58/181] perhaps says it best:

“The right to recognition as a person before the law is often neglected in the context of mental health. The concept of guardianship is frequently used improperly to deprive individuals with an intellectual or psychiatric disability of their legal capacity without any form of procedural safeguards. Thus, persons are deprived of their right to make some of the most important and basic decisions about their life on account of an actual or perceived disability without a fair hearing and/or periodical review by competent judicial authorities. The lack of due process guarantees may expose the individual whose capacity is at stake to several possible forms of abuse. An individual with a limited disability may be considered completely unable to make life choices independently and placed under “plenary guardianship”. Furthermore, guardianship may be improperly used to circumvent laws governing admission in mental health institutions, and the lack of a procedure for appealing or automatically reviewing decisions concerning legal incapacity could then determine the commitment of a person to an institution for life on the basis of an actual or perceived disability.”

Throughout Latin America and much of the world, the laws governing legal capacity must be reformed to protect the rights of people with disabilities. Hopefully, Mexico City can take a leadership position for the rest of the country, and eventually for other nations in Latin America.

Abandoned and disappeared: the state of human rights violations for persons with disabilities in Mexico

I have been in Mexico City for two weeks now working with Disability Rights International’s Latin America office and it has been an eye opening experience. The rights of persons with disabilities (PwD) are often swept aside, and PwD are frequently treated either as wards of the state or drains on social welfare, when they are just as deserving of equal recognition before the law. People with psycho-social disabilities are particularly vulnerable to exploitation and abuse, as they are frequently denied their legal capacity to make even the most basic decisions about their lives. In Mexico as in many other places, PwD are time and again abandoned to inhuman treatment in isolated psychiatric institutions.

For a popular culture reference you might imagine the novel or film One Flew over the Cuckoo’s Nest. The work remains a classic reminder of the treatment of mental patients in the USA during the 1960’s. The film portrays deplorable treatment of patients; they are tied to beds, heavily sedated, stigmatized, patronized, and at the end of the film the protagonist McMurphy is lobotomized. While the work remains a timeless reminder of psychiatric institutions of the past, conditions today are far worse in much of the world.

DRI’s Mexican office published a report in 2010 documenting much of the inhumane treatment that PwD suffer in state and private institutions, illustrating the various violations of local and international law. The report entitled “Abandoned and Disappeared, Mexico’s Segregation and Abuse of Children and Adults with Disabilities” examined institutions in five Mexican states and in the Federal District, uncovering gross human rights abuses. Beyond violations of well-established international conventions such as the UN Covenant on Economic, Political, and Social Rights, the UN Convention Against Torture, the American Convention of Human Rights, Mexico’s treatment of PwD violates many provisions of the recent UN Convention on the Rights of People with Disabilities (UNCRPD) which Mexico was instrumental in creating and which it ratified in 2007.

The key findings of the report are sometimes difficult to read. The first finding is that children with disabilities are disappeared and trafficked. The Mexican department of Integral Family Development is in charge of registering the admission of patients to state facilities, but in reality no such records are kept and children disappear into the system never to be found again by their families. For example, Ilse Michelle Curiel Martinez was placed in an institution at the age of six, despite her grandmother offering to take the child. When the parents went to look for Ilse at the Casita del Sur where she had been placed, she had disappeared. 22 other children have supposedly disappeared from the same institution, likely victims of child trafficking.

The next key finding has to do with inhumane treatment of patients which is at least cruel and unusual, and in many cases should be classified as torture. In state hospitals, patients are permanently tied to beds and wheelchairs, in some instances for most of their lives. These patients suffer muscular and skeletal deformations, are deprived of stimuli, are at risk of requiring amputation of limbs that receive poor circulation, and the patients are frequently left in their own waste for long periods of time. In some cases where physical restraints are deemed insufficient, patients are subjected to heavy sedation and even psychosurgery such as lobotomies.

Many other patients (often the majority) could easily live in the community with some support, but either their families are not willing to take them in, or other reasonable accommodations is not offered. These patients languish in institutions for a lifetime, receiving no treatment, habilitation, or rehabilitation. They are warehoused. To make matters worse, their living conditions are inhumane and degrading. Sanitation is usually abysmal, patients are malnourished, under-clothed, and when they are bathed there is typically little to no privacy.

To make matters worse, patients lose all legal and practical control over their lives. Legal capacity is held by their families or the director of the institutions where they are kept. Decisions about treatment, sexual health, rehabilitation or therapy, are all outside their control.

The conclusion of the report is that PwD should be afforded their right to live within the community as provided for by article 19 of the UNCRPD, and a process of de-institutionalization should start immediately. More generally, PwD must be provided the key rights guaranteed by the UNCRPD and other human rights conventions. The Mexican state is falling far short of its obligations under domestic and international law.

The DRI report gives some idea of the subject matter I will be dealing with this summer. Since arriving in Mexico I have been helping with this year’s Zero Project Report, a study of how the UNCRPD is being implemented across the world, what barriers exist, and which practices have worked in advancing its objectives. The Dutch Essl Foundation has sponsored the study, which seeks to focus attention on states which are not living up to their obligations, and to suggest practices that have worked in others places to overcome obstacles. In the near future I will also be working on a project relating to human rights abuses in Guatemala, and on a proposal to reform the Federal District’s civil code. In the coming weeks I hope to learn more about how the rights of persons with disabilities can be protected and I hope to tell you more of the work we’re doing.

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