Disability Rights, Visibility and Leadership

Written By Renata Juliotti

An estimated 1.3 billion people (about 16% of the global population) currently experience disability. This number is growing due in part to population aging and an increase in the prevalence of non-communicable diseases, such as COVID-19 [pandemic] and the post-COVID syndrome. 

Disability is part of being human. According to the World Health Organization (WHO), all of us will temporarily or permanently experience disability at some point in our lives. A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

Credits: Talento Incluir UinStocK / Filipe Olmos

Although “people with disabilities” sometimes refers to a single population, when it is actually a diverse group of people with a wide range of needs. Two people with the same type of disability can be affected in very different ways. Some disabilities may be hidden or not easy to see, such as Autism Spectrum Disorder (ASD) and other developmental and biopsychosocial disabilities. It is crucial to understand that a disability is not a disease but a condition. Most importantly - it is not a limitation but a characteristic of an individual.

The UN Convention on the Rights of Persons with Disabilities is the primary document for disability rights and inclusion globally. However, how do we discuss inclusion if it doesn’t start from the inside out? Who are the advisors? Is there representation and participation from a variety of disability civil society representatives? Do we have a special Program or Agency such as UN Women, UN Development Program, UN Framework Convention on Climate Change, and so on?

Disability is a complex and multidisciplinary theme. Therefore, it is necessary to consider having a special office or Program to connect research and up-to-date data to support this intersectionality. Only then can we systematically support the agencies and programs for this vulnerable group. In other words, data and research support disability in climate emergencies, women with disabilities in developing countries, urban development, and accessibility. 

The Universal Declaration of Human Rights affirmed the rights of people, without discrimination of any kind, to equal access to public services and social security and the realization of economic, social, and cultural rights 75 years ago. We have come a long way in those 75 years with many accomplishments, especially after the Convention was adopted. However, we still have many milestones to achieve. Disability is a complex issue with wide social, political and economic repercussions, mostly due to unreliable data. There have been progressive legal and institutional changes in the last decade. However, there is still a long way between advances in theory and implementation. It is a social and transversal construction; that is, it must be addressed in all aspects of social life.

In the United States, for instance, an area of expertise called "Disability Law" refers to laws related to individuals with disabilities, specifically protecting disabled individuals from certain kinds of discrimination. Disability laws are particularly concerned with employment, housing, education, and access to public services. Today, disability law is largely regulated by the Americans with Disabilities Act (ADA) of 1990. 

The Disability Rights Education & Defense Fund (DREDF) gathered a list of country-based laws that protect the rights of individuals with disabilities, aiming to foster the sharing of information and encourage the international dialogue on disability anti-discrimination. See more here: https://dredf.org/legal-advocacy/international-disability-rights/international-laws/ . 

Four years after the adoption of the UN Disability Inclusion Strategy, there is still a necessity for greater encouragement of the inclusion of disability leadership on a civil society basis. While it brings excellent elements to promote the visibility and implementation of public policies, there are some important aspects missing in this strategic plan. The leaders and representatives involved in the UN Our Common Agenda discussions are mainly political figures and only a few of them have a disability. Representation and leadership are indispensable for Disability Inclusion. 

We need to encourage leadership, participation, and engagement from Persons with Disabilities and their allies. 

Renata Juliotti, Contributor

Renata Juliotti started writing about disability at age 13 when she noticed the structural difficulties for persons with disabilities as a wheelchair user growing up in the ‘periferias’ (commonly known as favelas) on the outskirts of Sao Paulo, Brazil.

Now, she is an advocate for Disability, Women, and Climate Inclusion.

Currently, she's a doctoral candidate studying the United Nations Disability Framework at the Social Communication program of the Methodist University in São Paulo.

She is also the founder of Inclusive Agency, a member of the Society for Disability Studies, Outreach and Membership Associate for the Coalition for the UN We Need (C4UN) and consultancy lead for Talento Incluir, in Brazil.