Human Rights Watch’s Disability Rights Associate Director Carlos Ríos Espinosa speaks with one of the coalition’s leaders, whom he considers a top authority on Mexico’s legal capacity reform movement, a source of personal inspiration, and a friend, María Teresa Fernández (affectionately known as Marite), about her passion for this work, the impact of the reform bill, and the road ahead for disability rights in Mexico.
What was it like watching Congress pass the legal capacity reform?
The entire Deciding Is My Right coalition was watching the Mexican Congress channel on TV to see what was happening. We didn’t want to miss a second of the discussions. And when the unanimous decision was reached, we were moved to tears and could hardly believe it. It was all very moving, a very emotional moment.
How will this reform change the lives of people with disabilities and older persons in Mexico?
We hope and expect it will change lives for the better, by empowering people with disabilities and older persons to make decisions by themselves, with support if they so choose. Until now, people with intellectual or developmental disabilities were deemed incapable of deciding the most basic things, like where to live or with whom. So, many of them were put under legal guardianship, meaning that a third party could decide everything for them, even around health treatment.
In the past, people with disabilities and older people whose rights were violated and who were exploited because of legal guardianship could not even participate in the legal proceeding that declared them legally incapable. And their children or relatives would sometimes take advantage of this, abusively using their assets and constraining their decisions.
This bill eliminates guardianship altogether and instead orders the creation of a model of supported decision-making, by which someone could appoint a third person to facilitate the exercise their legal capacity by providing support for communicating, understanding legal acts and their consequences, and expressing their will. Now, hopefully, people can truly be masters of their own lives.
Why is legal capacity so important?
Legal capacity is a threshold right that enables the exercise of many other rights, such as the right to health. Of course, there is also the impact on institutionalization. Until now, shelter directors would often act as guardians for people who were institutionalized and decide what treatment they should receive, locking them up and imposing coercive treatments on them. Now, everything requires the informed consent of the person concerned.
Finally, in terms of political rights, legal capacity is essential for people with disabilities to represent themselves within political parties, participate in such parties, vote, and be elected as representatives.
What is next for implementing the legal capacity reform?
The next steps involve important actions by all civil society actors and the three branches of government.
Firstly, federal and state congresses should pass amendments and recognize the legal capacity of everyone 18 years or over, aligning these amendments with the National Civil and Family Procedure Code. We already have an initiative before Mexico City’s Congress.
Judges need to familiarize themselves with the reform, including through training.
And the executive branch should adopt public policies, in particular concerning support systems and their regulations. It should also create a public entity that provides guidelines to establish supported decision-making services for people who do not have the financial means to avail themselves of such supports.
Training for people with disabilities and their families is also required. Many struggle to understand what this reform means, its implications, how to claim ownership of these implications and how to promote and defend their rights. Families will need training from civil society, from us, so their fears in relation to supported decision making can be explored and clarified, and so they no longer fear that their children will be left unprotected when guardianship ends. And that’s just one of many aspects.
Then, society in general must work to materialize this cultural change, to open up to diversity and, in particular, to accept disability. More broadly, it’s about becoming an increasingly egalitarian and inclusive society.
At the international level, major organizations, like the United Nations and the Inter-American Commission on Human Rights, should keep promoting the issue and, through their various agencies, lift up and support as much as possible the organizations working on providing training.
I think everyone has work to do regarding this reform. Regarding the rights of people with disabilities in Mexico, I believe that the struggle will continue.
The reform protects the legal capacity of all individuals. What led the Deciding is My Right coalition to focus on all individuals, rather than only people with disabilities?
We need to see the bigger picture: The recognition of legal status and legal capacity is a human right, it is universal, and it should not be attached to specific groups. Every person, simply by virtue of being a person, has the right to exercise such capacity, to make decisions autonomously. If support is needed, support can certainly be provided. But the decision rests with the person. There is no reason to replace it with substitute decision-making.
What are the major obstacles to ending legal guardianship and granting legal capacity?
Mexican culture is very protectionist and paternalistic, there is this very deep-rooted idea that guardianship protects people with disabilities. But far from providing protection, guardianship makes people more vulnerable and subject to the will of third parties. I think this culture is one of the main challenges.
Unfortunately, governments have implemented welfare-based and protectionist policies, and the current administration believes that giving grants to people with disabilities is enough to meet its obligations. Furthermore, I think the current level of political polarization affects our cause. The issue of disability has never been high on any political agenda. Instead, it’s just been treated a matter of social assistance.
You have been a leader in the disability rights movement for decades. In fact, we met in 2007, when I was a member of Mexico City's Human Rights Commission board and you co-authored a report on disability rights for the Commission. I learned a lot from that report, and you encouraged me to get involved in the issue of legal capacity. Now, 15 years later and after constantly pushing Mexico to change its legislation, this victory has finally happened. After all this time, what fuels you to continue this work?
My engagement with the movement dates back to 1995, when I met Piña Palmera, an organization in Oaxaca that works with indigenous rural populations, families, and persons with disabilities. I was deeply moved by their work.
What keeps me going is, on the one hand, seeing the many things still needed to truly achieve equality for people with disabilities and the full exercise of their rights, and on the other hand, seeing that progress is being made. There will not be any progress unless civil society pushes the agenda. That is the driving force in my life. I am already 71 years old, and since the beginning of the pandemic in 2020, I’ve had significant muscle loss as a result of having polio as a child. I struggle more and more to do things and I move around a lot less. I do as much as I can with supports.
Mexico ratified the UN Convention on the Rights of Persons with Disabilities [CRPD] in 2007, so why weren’t the rights of people with disabilities fully respected?
Mexico ratified the CRPD but also made what’s called an interpretive declaration to Article 12 on the recognition of the legal capacity of all persons with disabilities in every aspect of life. Mexico basically said that legal guardianship complies with the CRPD, which is totally false. This was a major blow for people with disabilities in Mexico.
There was an upside to the government’s interpretative declaration: It prompted the disability rights movement to unite, learn more about the CRPD, and join forces to eliminate legal guardianship. This contributed significantly to the strength of the movement. Among the most memorable demonstrations we mounted was with a theater group of deaf people called “Seña y Verbo” (Sign and Verb), who performed in chains outside the Senate as people being “chained” by legal guardianship. So, that was the beginning.
Fortunately, as a result of Mexico’s 2011 constitutional reform on human rights, it withdrew its interpretative declaration to the CRPD. But this still left Mexico’s domestic legislation untouched. Now that has changed.
Tell me about the Deciding Is My Right coalition.
Deciding Is My Right was formed recently, 2020, and includes many Mexican organizations representing people with disabilities, including Asociación Mexicana de Síndrome de Costello, Centro de Autonomía Personal y Social A.C. (CAPYS), Colectivo Chuhcan, A.C. Confederación Mexicana de Organizaciones en Favor de la Persona con Discapacidad Intelectual, A. C. (CONFE), Documenta A.C, Entropía Social, Fundación Gilberto Rincón Gallardo, Fundación para la Inclusión y Desarrollo de Personas con Discapacidad, A.C, Human Rights Watch, Movimiento de Personas con Discapacidad, Movimiento Asociativo Jalisciense pro Personas con Discapacidad, A.C. (Madijal, A.C.), Programa Universitario de Derechos Humanos (PUDH-UNAM), Red Orgullo Loco, and Yo También. Our initiative is not limited to recognizing the legal capacity of persons with disabilities; we are advocating for a universal recognition of legal capacity, which would also benefit older persons, who are similarly often victims of legal guardianship. The older person’s organization that is part of our collective is Comité Ajusco A.C. We also have specialist lawyers involved, and some of them even work at the Supreme Court.
We also have people with different disabilities as part of the coalition, and accommodations have been made to promote or facilitate their participation in our different activities. For example, there’s a blind person, Ernesto Rosas, so we used documents in formats that could be read by his screen reader. We also self-describe ourselves at the beginning of meetings.
There is Fernanda Castro Maya, an activist with an intellectual disability, and Ricardo Adair, a person with autism. They require easy-to-read formats, so we use simple language and words. There are also people with psychosocial disabilities, who have asked for meetings not to start too early or for more time to be allocated to certain activities, and we always try to meet those requirements. Finally, there are people with physical disabilities, like Cristian Mendoza from the Movement of People with Disabilities, and myself, and we prefer virtual rather than in-person meetings.
