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Legislation aimed at improving the rights of people with disabilities is well established. But barriers to full inclusion in scientific fields have been much slower to break down, says Brazilian researcher Jessica Norberto Rocha.
Rocha, who has worked for more than a decade in public engagement in science and technology, has been conducting studies to map disabilities legislation and better understand how Latin American science institutions have been tackling — or failing to tackle — the issue of accessibility.
Rocha is a science communicator and researcher at the Cecierj Foundation, a centre for distance learning in higher education and science communication in Rio de Janeiro, and coordinator of the Group of Accessible Science Museums and Centres. She spoke to SciDev.Net about what still needs to be done to promote inclusion for all.
The debate on how to improve accessibility for people with disabilities — and legislation to enforce this — has been gaining traction in recent decades. Could you give an overview of the situation?
The disability rights movement is not new. Since the 1948 Universal Declaration of Human Rights we have had action aimed at the inclusion of people with disabilities in society. In the 1960s and 1970s, there was significant growth [in the rights movement] leading to a diverse range of affirmative action [to improve accessibility].
“Many countries are still unable to guarantee these rights and numerous barriers are created by society for people with disabilities to participate and engage in the scientific universe,”
Jessica Norberto Rocha, science communicator and researcher, Cecierj Foundation
As a result of much societal pressure over the last 40 years, authorities and non-governmental organisations have designed support programmes focusing on these issues. In 2006, the UN launched its Convention on the Rights of Persons with Disabilities (CRPD) and its Optional Protocol, which work alongside the Universal Declaration. These two documents represent the disability movement’s victory; they brought hope to billions of persons with disabilities, because they highlighted the obligation of states to promote and protect the rights and dignity of disabled people.
More recently, the 2030 Agenda for Sustainable Development goals set in 2015 promises to leave no one behind and includes disability and persons with disabilities as cross-cutting issues.
In Latin America, many countries recently have created legislation on accessibility. How many countries in the region have moved in this direction?
The movement towards the [UN] Convention in Latin America initiated in Mexico in 2001 and drew the immediate support of other Latin American countries in the following years. Following its publication in 2006, 162 countries, including all Latin American nations, signed it and ratified it at different times.
Our study group conducted a survey in 2017 and identified 18 Latin American countries that have laws aimed at the inclusion of people with disabilities, plus one country with an action plan (Cuba). Some of these are very recent and are already in accordance with the UN Convention, which is the case for Brazil.
What are the main aspects of such legislation in Latin America? Has it been successful in promoting inclusion for people with disabilities?
With this legislation, countries have committed to implement actions to promote both equal access and the rights of people with disabilities. Legislation is important because when rights of people with disabilities are clearly expressed in official documents it endows all citizens with legally binding rights.
In this sense, advances have been made in the legislative arena in Latin America. However, substantial changes are not immediate, and many challenges are being seen in different areas, such as education, mobility and cultural and scientific access.
Researchers and practitioners working on social inclusion and disabilities have highlighted the fact that access to science for deaf and blind people is much more difficult than for people who hear and see. Why is that?
This is because there is a gap between legislation and what happens in real life. Most often, disabled people's access to education and opportunities to live experiences that add to their cultural capital — such as reading a book, going to museums and exhibitions and access to scientific information — is difficult.
Many countries are still unable to guarantee these rights and numerous barriers are created by society for people with disabilities to participate and engage in the scientific universe. As a result, they are less likely to reach universities, pursue scientific careers and, consequently, to be represented in those academic worlds. These barriers can impact the individual’s whole life trajectory, and are likely to be perpetuated in the next generation.
How do communication difficulties play into this?
The mother tongue of the world’s 72 million deaf people is often their national sign language and there are around 300 different sign languages. But only 41 countries in the world have recognised sign language as an official language, and in some of them — such as Brazil’s Libras — there are no or few signs for scientific terms. Furthermore, most teachers and interpreters, when available, do not know the scientific terms, which is a significant limitation in science communication.
In schools and conferences there are few resources and strategies for the inclusion of blind or visually impaired people: slideshows, videos, and other data visualisations have no audio description, nor are there professionals qualified to offer this. Many institutional webpages and repositories are not accessible to screen readers. Thus, experiments and facilities have poor accessibility for deaf and blind people, creating a barrier for their representation in different areas of knowledge.
You carried out a study on accessibility in science centres and museums in Latin America. What did you find?
Science museums are powerful places not only for science communication, informal science teaching and leisure, but also for promoting science and technology in an equitable and inclusive way. However, to guarantee accessibility and inclusion at museums and institutions devoted to science communication, it is not enough simply to adapt buildings to improve physical access. All their services must be equipped so any person can reach, activate, use and experience them.
In our studies in Latin America we are seeing that these institutions generally offer some physical accessibility but fewer resources for tackling communicational and attitudinal barriers. Also, there is an absence of institutional practices; they are still sporadic rather than routine. If these institutions are to become more inclusive, organisational change is needed so that accessibility and social inclusion become part of their mission.
What do you think should be the priorities for engaging people with disabilities?
Greater funding is needed for research, action and practice in the field. More academic studies are needed to generate an understanding of the institutional contexts and learning processes that support practices of inclusion of people with disabilities, not only in museums and scientific-cultural spaces, but also for media, cultural facilities and basic and higher education.
We need people with disabilities playing a greater role as protagonists, professionals and consultants, and as the subjects of research, since research into their perspectives would cast much light on accessibility, or its lack thereof.
Finally, it is important to train staff and personnel, increase management and decision-maker awareness, and foster initiatives that familiarise people with national laws and international conventions that guarantee the rights of people with disabilities and their access and full enjoyment of life.