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Why Disability Inclusion Matters

Human rights advocates should embed a disability perspective in all rights issues, cultivate the leadership of people with disabilities, and address ableism, including in their own organizations.

Published in: Open Global Rights
A protest for disability rights in Porto, Portugal on May 5, 2019. © 2019 De Visu/Shutterstock

More than one billion. That’s how many people live with a disability around the world. One in six of us. When we factor in family members, friends, neighbors, and colleagues, we come to realize that disability affects someone we know. Disability is the one family anyone may join at any point in their lives. 

However, people with disabilities remain largely excluded from the mainstream human rights agenda. Intersectionalities with the rights of women, children, older people, Indigenous peoples, LGBTQI+ people, and other identities are not fully leveraged, let alone included in conversations about how to address climate change or poverty and inequalities around the world.

The disability rights movement, increasingly led by people with disabilities, has rallied behind the principle of “Nothing about us without us,” calling on governments and international organizations to include people with disabilities in planning and decision-making. In recent years, disability advocates have modified this slogan to “Nothing without us,” recognizing that many challenges affect us all and demanding a seat at all tables.

The late disability rights pioneer Judy Heumann said, “When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with.” 

As a global human rights organization with a dedicated team focusing on disability rights, Human Rights Watch sees our role as allies and partners, fighting alongside people with disabilities and their representative organizations. Ten years ago, we created our disability rights division. Now, we’ve grown to a team of 13—most of whom either have a disability or have a close family member with a disability—based in nine cities in four regions. We have expanded to include the rights of older people, many of whom experience discrimination and abuse every day, and we are bringing along the rest of Human Rights Watch to integrate a disability and aging lens into their work.

It has been a humbling journey. Part of that journey has been confronting bias. Human rights organizations tackle racism and sexism in our communities, but few groups address more invisible “-isms”: ableism and ageism. At its heart, ableism is rooted in the assumption that people with disabilities require “fixing” and reflects our biases and prejudices toward people with disabilities. Similarly, ageism takes the form of negative stereotypes, prejudices, and behaviors toward older people and older age.

As a result, people with disabilities and older people are often denied basic rights the rest of the population takes for granted. In many countries, they are warehoused in institutions, segregated from their communities. They are often placed under guardianship—denied the right to make decisions about their lives—under the guise of “protection.” But denying people their legal capacity often leads to abuses such as forced sterilization, involuntary health treatment, indefinite detention, or disenfranchisement. For many people with disabilities and older people, it means not being perceived or treated as an equal human being. 

Led and inspired by the experiences of people with disabilities, Human Rights Watch has helped shift this mindset, grounding our approach in the United Nations Convention on the Rights of Persons with Disabilities, adopted more than 15 years ago. For example, in Mexico, we are part of a coalition of organizations of people with disabilities, human rights groups, and academics called “Deciding is my right,” which pushed for groundbreaking legal reforms that grant everyone over the age of 18 the right to legal capacity. It cannot be overstated how important this outcome is for millions of people in Mexico, as it is fundamental to so many other rights.  

As Ricardo Adair, a person with autism who led this advocacy effort, said: “I do not ask for anything else but the same thing as anyone else: to be able to decide for myself.”

Disability inclusion is also strategic and leads to concrete impacts. Over the past decade, our team has collaborated with colleagues across our organization, working on a range of topics in various regions, producing research on issues such as violence against women and girls with disabilities and the need for an inclusive humanitarian response during armed conflicts. Our work with torture experts and mental health advocates has helped call out the practice of shackling or chaining people with psychosocial disabilities as torture, leading some countries to ban the practice that has harmed hundreds of thousands of people.

Our collaboration with disability rights, women’s rights, and humanitarian organizations led to the first UN Security Council briefing by a person with a disability in 2019 to discuss the situation in Syria. The message of the Syrian activist Nujeen Mustafa, a young woman in a wheelchair, was clear: “This should not be just another meeting where [delegates] make grand statements and then move on. . . . [Y]ou can and should do more to ensure that people with disabilities are included in all aspects of your work—we cannot wait any longer.”  

As a human rights organization, Human Rights Watch quickly recognized that we couldn’t advocate for the rights of inclusion of people with disabilities if we didn’t practice these principles ourselves. While we still have more to do, we have made efforts to integrate a disability-inclusive approach across the organization and have the full support of our senior leadership and board of directors.

We initiated closed captioning and sign language interpretation in many of our multimedia products. We committed to making our events and office spaces accessible. We produce easy-to-read versions of our reports and other publications, enabling people with intellectual disabilities to access our research. We also offer “relaxed” screenings during the Human Rights Watch Film Festival, making our events more welcoming and inclusive. We have undertaken web accessibility audits and a reasonable accommodations policy and are exploring longer-term investments in accessibility and inclusion initiatives across the organization. We can always do better and are not quite yet the gold standard we aim to be, but we are learning and adapting with advice from advocates with disabilities around the world.

Social justice, equity, and inclusion are buzzwords that we hear across the human rights movement and corporations alike. But these buzzwords alone do not make a meaningful difference for people who have been historically marginalized and isolated. Only actions can. Judy Heumann, a mentor to me and countless others, called on us to “Demand what you believe in.” All of us should stand in solidarity with people with disabilities and older people worldwide as they demand equal human rights.

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