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‘Encourage leadership, participation and engagement from Persons with Disabilities’

During 2023 we commemorate the 75th anniversary of the Universal Declaration of Human Rights. In observation of the International Day of Persons with Disabilities on 3 December, Renata Juliotti founder of Inclusive Agency, journalist, teacher and lecturer, member of the Society for Disability Studies was in conversation with Edit Morin-Kovacs.

About Renata Juliotti

Renata Juliotti started writing about disability as a 13-year-old, when she noticed the structural difficulties for persons with disabilities. For her disability goes beyond the ableism as seen in the different sectors of society. Renata Juliotti grew up in the ‘periferias’ commonly known as favelas on the outskirts of São Paulo, Brazil.

Her community only had access to basic sanitation, it was difficult to access public health and education and there was a lack of attention to urban development. Accessibility doesn’t exist in these areas, which forces people with disabilities to remain confined to their homes.

Now she is an advocate for Disability, Women and Climate Inclusion. Currently a doctoral candidate studying the United Nations Disability Framework at the Social Communication program of the Methodist University in São Paulo, she is the founder of Inclusive Agency, a journalist, teacher and lecturer, member of the Society for Disability Studies.


‘An estimated 1.3 billion people – about 16% of the global population – currently experience significant disability.[i]This number is growing due in part to population ageing and an increase in the prevalence of noncommunicable diseases, such as COVID-19 [pandemic] and the ´post-COVID syndrome’, says Renata Juliotti.

‘A person’s environment has a huge effect on the experience and extent of disability. Inaccessible environments create barriers that often hinder the full and effective participation of persons with disabilities in the society on an equal basis with others. Progress on improving social participation can be made by addressing these barriers and facilitating persons with disabilities in their day-to-day lives,’ she further explains.

Edit Morin-Kovacs, Programme Manager at the Foundation met Renata Juliotti during the 2023 Academic Council of the United Nations Systems conference. Their conversation provided a great opportunity to discuss how persons with disabilities are able to engage in the context of the Foundation’s interests in supporting multilateralism, inclusivity and intersectionality.

‘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 inside out? Who are the advisors? Is there representation and participation from disabled civil society? Do we have a special Program or Agency such as UN Women, UN Development Program, UN Framework Convention on Climate Change, and so on?’ Renata Juliotti explores some of these issues.

‘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,’ she says.

How does Renata Juliotti define a disability or disabilities and how should the world understand it today?

According to her, ‘Disability is part of being human’. She cites the World Health Organization’s definition. ‘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)’.[ii]

‘Although ‘people with disabilities’ sometimes refers to a single population, it is in effect 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. 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,’ she reiterates.

In the context of the 75th anniversary of the Universal Declaration of Human Rights, Renata Juliotti shares the following view.

‘We have come a long way 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.’ But despite the progress, ‘There is still a long way between advances in theory and implementation. Disability is a social and transversal construction; that is, it must be addressed in all aspects of social life’.

As an example, one can look at the expansion of Disability Studies as an interdisciplinary field motivated by other elements to compose the area of knowledge with hybrid perspectives, which promote integration of views on disability theorising. Quoting Tom Shakespeare, a scholar in the field, who says, ‘…the impediment implies predicament, because ‘even with the removal of barriers, the impediment will remain problematic for many people with disabilities’.[iii]

Four years after the adoption of the UN Disability Inclusion Strategy, she argues that while it ‘brings excellent elements to promote the visibility and implementation of public policies, there are some important aspects missing in this strategic plan. There still needs to be greater encouragement of the inclusion of disability leadership on a civil society basis.’

‘The leaders of the Agenda  [Our Common Agenda] at the UN are mainly political figures, and only a few of them have a disability. Representation and leadership are indispensable for Disability Inclusion’, she adds.

‘Surprisingly, little is known about disability within a cultural context – and this is essential to understand how this theme is perceived in different places globally.’

Renata Juliotti also wants an improvement in ‘research and data collecting to promote a better understanding of the variety of conditions worldwide and different aspects of the lifestyle of persons with disabilities in the most diverse contexts.’

When asked about how technology facilitates engagement of lives of persons with disabilities, she lifts out the following examples.

‘The advance of technology has improved the quality of life for many people with disabilities. Although, technology is only beneficial if it is accessible to the user. Over the years, companies have worked harder than ever to ensure anyone can use their products. In the past, one may have had reason to believe that technology was out of their reach. For some, it was because there weren’t features that could assist them. For others, it was because there was a lack of understanding of how technology could benefit them. Fortunately, there are now some admirable pieces of technology for disabled people that are easier to use than ever, such as Assistive Technology’.

She cites the increased use of digital assistants in homes, such as Siri, Alexa, and Cortana that are designed to lighten an individual workload, are programmed to become more intuitive over time as they become used to different commands they are presented with.

‘By being voice-activated, users with physical disabilities can find themselves some ease.’ she advises.

‘Assistive technology can include mobility devices such as walkers and wheelchairs and hardware, software, and peripherals that assist people with disabilities in accessing computers or other information technologies. For example, people with limited hand function may use a keyboard with large keys or a particular mouse to operate a computer, people who are blind may use software that reads text on the screen in a computer-generated voice, people with low vision may use software that enlarges screen content, people who are deaf may use a TTY (text telephone), or people with speech impairments may use a device that speaks out loud as they enter text via a keyboard’, she says.

Wrapping up our conversation, Renata Juliotti cautions.

‘There is a wrongful idea that only because one has a disability is one able to talk about all aspects of disability inclusion, rights, or representation’.

She asks us to ‘imagine a Japanese chef who is an expert in French cuisine and only knows the basics of its origins. They might understand the basics, but is not an expert, even though they are expected to be.’

‘Social advocacy is the same’ she says.

‘A person with a disability can tell you about their experience living with the condition. However, they may not have the knowledge of the models of disability, data, or the transversal aspects of disability in different scenarios, economic backgrounds, political and cultural influences, and so on.’

She shares the following strong message.

‘People with disabilities are usually considered to talk about disability or diversity only – with a wrong perception that because of ‘my’ disability, I’m not able to perform any other profession or may not be an expert in engineering, culinary or IT because that’s beyond my abilities’.

‘That’s why we need to encourage leadership, participation and engagement from Persons with Disabilities and their allies,’ Renata Juliotti concludes.

‘Four years after the adoption of the UN Disability Inclusion Strategy, she argues that while it ‘brings excellent elements to promote the visibility and implementation of public policies, there are some important aspects missing in this strategic plan. There still needs to be greater encouragement of the inclusion of disability leadership on a civil society basis.’


References

[i] World Health Organization,  https://www.who.int/news-room/fact-sheets/detail/disability-and-health, online, last update 7 March 2023.

[ii] Broad definition from the World Health Organization, https://www.who.int/health-topics/disability#tab=tab_1.

[iii] Tom Shakespeare, ’The Social Model of Disability’, The Disabilities Studies Reade, Ed Lennard J. Davis (New York: Routledge, 2010),

Featured photo: Renata Juliotti with participants of  “Imprensa Jovem”, a project sponsored by the São  Paulo State Secretary of Education and supported by Methodist University of São Paulo.
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Edit Morin-Kovacs By Edit Morin-Kovacs

About Edit Morin-Kovacs


Edit Morin-Kovacs is the Foundation’s Programme Manager leading the Multilateralism work. Over the last 25 years she has worked in the areas of conflict prevention,emergency contexts, crisis management, peacebuilding and international development.

Her rich experience has been built during her tenure with the United Nations, European Union as well as the Organization for Security and Cooperation in Europe in the Western Balkans and Ukraine. She also held various consulting assignments in the Middle East.

Edit has master’s degrees in International Relations and Political Science.