A note on language: I use both ‘identify-first’ (disabled person) and ‘people-first’ (person with a disability) language throughout this article because English-speaking disability advocates use (and request that other people use) one or both of these. People with disabilities are not a monolithic group, and different people have distinct preferences of how they would like to be referred to. For example, many people in the autistic community strongly prefer identity-first language (autistic person), while many people in the intellectual disability community strongly prefer person-first language (person with an intellectual disability). Even within these smaller communities, people have individual differences and preferences.
The 2006 United Nations (U.N.) Convention on the Rights of Persons with Disabilities (CRPD) sets forth legal and policy directives necessary to advance and protect the rights of persons with disabilities around the world. 184 countries have since ratified the CRPD, and six more—including the United States—have signed without ratifying it. Article 12 of the CRPD, as Disability Rights International explains, “recognizes the right of all persons with disabilities to make decisions, with legal effect, over their own lives – also known as the right to legal capacity.”
Traditional guardianship laws allow courts to strip individuals, in full (often referred to as “plenary”) or in part, of the right to make decisions about their lives by transferring these rights to court-appointed guardians. According to disability rights advocates and legal scholars, plenary guardianship is inconsistent with the right to legal capacity guaranteed by Article 12. Thus, in response to the CRPD and continued organizing and advocacy efforts by disability rights groups and activists, countries have begun to reform their respective guardianship laws (for one example, see Asdown Colombia and Sergio Araque’s successful advocacy for legislative reform in Colombia). Unfortunately, the right to legal capacity is continually denied to people with disabilities around the world—particularly to those with intellectual disabilities, over whom plenary guardianship is habitually granted.
The right to legal capacity has been largely absent from the public discourse about climate change and its disproportionate impact on people with disabilities. This article provides a brief overview of these disproportionate effects, discusses the relevance of legal capacity to climate change, and emphasizes the importance of protecting the right to legal capacity in climate resilience plans—how governments adapt to the effects of climate change through preparation, response, and recovery.
Overview of Disproportionate Impact
For years, disability rights advocates have warned about the disproportionate impacts that people with disabilities face from global climate change and have criticized international convenings, like the U.N. Framework Convention on Climate Change, for repeatedly denying disabled people decision-making roles. It was not until 2019 that the U.N. adopted its first resolution recognizing the unique risks disabled people face in the context of climate change. There, the U.N. called on governments to include people with disabilities in their plans for climate resilience. One year later, the Office of the U.N. High Commissioner for Human Rights published an analytical study on which of disabled peoples’ human rights are especially at risk due to climate change; those identified include the rights to health, adequate housing, food security, water and sanitation, and human mobility. According to the report, people with disabilities are less likely to be evacuated from natural disasters, more likely to be permanently displaced following them, more likely to experience serious injury or death during and after extreme weather events, and less likely to receive a proportionate share of scarce resources in times of crisis than non-disabled people. These risks are uniquely compounded for disabled women and gender non-conforming people, as well as disabled people of the global majority.
In the last two years, activists, civil society organizations, academics, and the media have been increasingly—and importantly—bringing the heightened climate risks that disabled people face to the public’s attention. However, the right to legal capacity continues to be underrepresented in public discourse about climate resilience and disability.
Relevance of Legal Capacity
When the right to legal capacity is denied, critical life decisions become someone else’s to make, and both the frequency and impact of these decisions can only be expected to increase in our changing world. People will need to make more decisions about their health care as negative health effects from rising temperatures and extreme weather events increase. With pandemics and epidemics expected to rise in frequency and intensity, people will have to make more choices about how they want to assess and live with the accompanying risks. People’s decisions about where to live and how to respond to increasingly common natural disasters and evacuation orders will become increasingly important. The psychological toll of a changing planet renders decisions about what, if any, mental health support to seek and what faith to practice even more relevant. Moreover, as both the present and future of the planet feel increasingly uncertain, people’s decisions about their reproductive health, including decisions about whether and when to have a family, carry new weight. Without a protected right to legal capacity, the people expected to be among the most impacted by a climate-changed world will be the people who are least able to decide the course of their own futures within it.
A failure to protect the right to legal capacity and the perpetuation of plenary guardianship laws could also exacerbate the aforementioned risks that climate change poses to the rights of people with disabilities, like unequal access to scarce resources. Guardianship abuse cases are already well-known and are likely underreported. The abuse that has been reported ranges from disabled people under guardianship nearly starving to death to many young people with disabilities having guardian-imposed “do not resuscitate” orders in their medical records. Instances of financial abuse are also widely reported. The potential for conflicts of interest and abuse in a resource-strapped world seem even higher: without decision-making power, choices about the extent to which increasingly scarce resources—including food, water and life-saving medical care—are available to people with disabilities can be made by court-appointed guardians, who may be fighting for access to those resources themselves.
Disability-inclusive climate resilience plans must address the many threats to human rights that have long been identified by disabled activists and that have been recently outlined in the U.N. analytical study. Climate resilience plans will be incomplete, however, if they do not include comprehensive reforms that ensure Article 12’s right to legal capacity is protected for people with disabilities.
The world is changing, and people with disabilities are among the most adversely affected. In the spirit of the disability rights refrain, “nothing about us without us,” it is time to acknowledge the particular importance that the right to legal capacity has in the context of disability-inclusive climate resilience, and to move with urgency to advance it.
Author Biography: Elizabeth Schroeder is a Senior Moderator of the International Law and Policy Brief (ILPB) and a J.D. candidate at The George Washington University Law School. She has a Master’s of Education in Special Education from Vanderbilt University and a Bachelor’s of Science in Psychology from the University of North Carolina at Chapel Hill.