In a landmark victory for people with disabilities and older adults, Mexican President Manuel Lopez Obrador this summer signed the National Civil and Family Procedure Code, establishing full legal capacity and the right to supported decision-making for everyone over the age of 18. This is a crucial victory for Mexico’s people with disabilities and older adults, who are often stripped of their legal capacity. Spearheading this success was Deciding Is My Right, a coalition of disability and older adults’ organizations, other human rights groups, and academia.
Carlos Ríos Espinosa, deputy disability rights director at Human Rights Watch, spoke with a leading figure in Mexico’s legal capacity reform movement, a personal inspiration, and a friend and co-leader of the coalition, María Teresa Fernández (Marite), about her passion for the work, the impact of the reform bill, and the future of disability rights in Mexico.
What was it like seeing Parliament pass the legal capacity reforms?
“It is my right to decide” All of us in the coalition were watching the Mexican Congress channel on TV to know what was going on. We didn’t want to miss a single moment of the debate. And when the unanimous decision was made, we were moved to tears and could hardly believe it. It was a very moving, very emotional moment.
How will this reform change the lives of Mexico’s disabled and elderly?
We hope and expect that the lives of disabled and elderly people will change for the better by allowing them to make their own decisions, with support if they wish. Until now, people with intellectual and developmental disabilities were thought to be unable to make even the most basic decisions, such as where to live and who to live with. Therefore, many of them were placed under legal guardianship, allowing a third party to make all decisions for them, including their medical care.
Until now, disabled and elderly people have had their rights violated and exploited by the legal guardianship system. They have not even been able to participate in the legal process to be declared incompetent. Their children and relatives have sometimes taken advantage of this to make inappropriate use of their assets or restrict their decision-making.
The bill would abolish guardianship entirely and instead mandate the creation of a supported decision-making model, whereby a third party can be appointed to facilitate the exercise of legal capacity by providing assistance with communication, understanding legal actions and their consequences, and expressing wishes. This would allow people to truly become masters of their own lives.
Why is legal capacity so important?
Legal capacity is a threshold right for exercising many other rights, such as the right to health. Of course, it also has an impact on institutionalization. In the past, the director of the institution, as the guardian of the resident, often decided what kind of treatment the resident should receive and confined or forced the resident to undergo such treatment, but now all of this requires the individual’s informed consent.
Finally, in terms of political rights, legal capacity is essential for persons with disabilities to represent themselves within political parties, join and vote in political parties and be elected as representatives.
What are the next steps to implement legal capacity reform?
The next steps will involve significant action by all civil society actors and the three branches of government.
First, federal and state legislatures must pass reforms that grant legal capacity to everyone over the age of 18 and align these reforms with the national civil and family procedure code. We have already submitted a proposal to the Mexico City Congress.
Judges need to deepen their understanding of this reform through training and other means.
Public authorities should adopt public policies, especially regarding support systems and their regulation, and establish public institutions to provide guidelines for establishing supported decision-making services for people who do not have the financial means to obtain support.
We also need training for people with disabilities and their families. Many are struggling to understand what this reform means, what its impacts are, how to advocate for them, and how to promote and protect their rights. Families need training from civil society, from us, so they can explore and clarify their concerns about supported decision-making, so they don’t fear that their children will be left unprotected when guardianship ends. And this is just one of many aspects.
And society as a whole must strive to embody this cultural change and embrace diversity, and disability in particular, to become more equal and inclusive in a broader sense.
At the international level, key organizations such as the United Nations and the Inter-American Commission on Human Rights must continue to promote this issue and, through their various institutions, support and strengthen, wherever possible, those organizations working to provide training.
I think everyone has something to work on when it comes to this reform, and I think the fight will continue when it comes to disability rights in Mexico.
This reform protects the legal capacity of all individuals. Why did the “My Right to Decide” coalition focus on all individuals, not just those with disabilities?
We need to look at things from a broader perspective. Recognition of legal status and legal capacity is a human right, it is universal and should not be attached to any particular group. Every person, simply by virtue of being human, has the right to exercise such capacity and to make autonomous decisions. If support is needed, of course that can be provided. But the right to make decisions belongs to the person. There is no reason to replace that with alternative decision-making.
What are the main obstacles to terminating legal guardianship and granting legal capacity?
Mexican culture is very protectionist and paternalistic, and there is a very ingrained idea that guardianship protects people with disabilities. But instead of 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, the government has implemented a protectionist welfare-based policy, and the current administration believes that it can fulfill its obligations by providing subsidies to people with disabilities. Furthermore, I think the current level of political polarization has affected our work. Disability issues have never been high on any political agenda. Rather, they have been treated as a social assistance issue.
You’ve been a leader in the disability rights movement for decades. In fact, we met in 2007, when I was a member of the Mexico City Human Rights Commission and you co-wrote a report on disability rights for the Commission. I learned a lot from that report and you inspired me to get involved in legal capacity issues. Now, 15 years later, your relentless push to get Mexico to change the law has finally brought this victory. What motivates you to continue this work after all these years?
I became involved in this movement in 1995 when I met Piña Palmera, an organization that supports indigenous people, families and people with disabilities in Oaxaca. I was deeply moved by their work.
I persevere because, on the one hand, I see that a lot still needs to be done to truly achieve equality and the full exercise of rights for people with disabilities, and on the other hand, I see progress. There will be no progress unless civil society drives the agenda. That is what drives me in life. I am already 71 years old, but since the start of the 2020 pandemic, I have lost a lot of muscle mass, due to the polio I had as a child. It is becoming increasingly difficult to do things and I move around much less. I am doing the best I can, with support.
Mexico ratifies the UN Convention on the Rights of Persons with Disabilities [CRPD] Why were the rights of people with disabilities not fully respected in 2007?
Mexico ratified the Convention on the Rights of Persons with Disabilities, but at the same time, it made an interpretative declaration on article 12, which recognizes the legal capacity of all persons with disabilities in all areas of life. Mexico basically argued that its legal guardianship system complies with the Convention on the Rights of Persons with Disabilities, which is completely false. This was a major blow to persons with disabilities in Mexico.
The government’s interpretative declaration also had a positive side: it gave the disability rights movement the opportunity to come together, learn more about the Convention on the Rights of Persons with Disabilities, and work together to abolish the legal guardianship system. This was a great contribution to the movement’s strength. The most memorable demonstration we did was one we organized with a deaf theater troupe called “Seña y Verbo” (Sign Language and Verb). They chained themselves outside the Senate, playing the roles of people “chained” by the legal guardianship system. That was the beginning.
Fortunately, Mexico repealed the interpretative declaration of the Convention on the Rights of Persons with Disabilities in 2011 as a result of a constitutional amendment on human rights. However, Mexican national law remained unchanged. But now the situation has changed.
Tell us about the “Deciding Is My Right” coalition.
Deciding Is My Right was formed in 2020 and is supported by the following organizations: Mexican Association of People with Disabilities, Center for Personal and Social Independence AC (CAPYS), Colectivo Chucan, Mexican Federation of Organizations Supporting People with Intellectual Disabilities AC (CONFE), Documenta AC, Entropia Social, Gilberto Rincón Gallardo Foundation, Foundation for Inclusion and Development of People with Disabilities AC, Human Rights Watch, Disability Movement, Association of Harris Sciences of People with Disabilities AC (Madihar, AC), University Human Rights Program (PUDH-UNAM), Red Orgulo Loco, Yo At the same time, our efforts are not limited to the recognition of the legal capacity of people with disabilities. We argue for the universal recognition of legal capacity, which will also benefit older people, who are often victims of legal guardianship. The older people organization that is part of our group is the Comité Ajusco AC. Specialized lawyers are also involved, some of whom work in the Supreme Court.
The coalition also includes people with various disabilities, and we make arrangements to promote and facilitate their participation in the various activities. For example, we have Ernesto Rosas, who is visually impaired, so we have used documents in a format that can be read by his screen reader, and we also introduce ourselves at the beginning of the meetings.
We have activists like Fernanda Castro Maya, who has an intellectual disability, and Ricardo Adair, who has autism. They ask for an easy-to-read format, so we use simple language and vocabulary. We also have people with mental disabilities who have asked us not to start meetings too early or to allocate more time to certain activities. We always try to accommodate their requests. Finally, we have people like Christian Mendoza, from the disability movement, and people with physical disabilities, like me, who prefer virtual meetings to face-to-face meetings.