The International Science Council (ISC) champions the right to participate in and benefit from science as a universal human right, integral to its vision of science as a Global Public Good. Through its new interpretation, the ISC addresses critical gaps in understanding and implementing this right, refining its meaning and significance. Rooted in the scientific community, this effort complements United Nations initiatives and empowers scientists to actively shape and uphold this global right. Without safeguarding scientific freedom and responsibility and ensuring universal recognition of this right, the transformative role of science in society cannot be fully realized.
Education is fundamental to the right to science, because you can neither benefit from nor participate in something you don’t understand.
The need for scientific literacy underpins the society in which we live – whether it’s about understanding the effects of climate change, or the spread of viruses and benefits of vaccines during the COVID-19 pandemic, or even something as basic, daily and ubiquitous as using a smartphone.
To be scientifically literate, you need two things: access to information, and a basic understanding of science. To understand science, you have to have an education – every other aspect of participating in and benefiting from science flows from that.
But around the world, children with disabilities are often told they cannot study science, simply because they live with a disability. A teacher might say, “I’m sorry, you’re blind; I don’t know how to teach you chemistry,” or, “Your disability makes it too hard.”
If we think about this in the context of the right to science, ensuring access to science education for persons with disabilities becomes part of upholding a human right.
Another common barrier is lack of access to information in an appropriate format. If you’re blind, is the information available in Braille? If you’re partially sighted, is it in large print? If you’re culturally Deaf, is it provided in your sign language of choice?
Beyond that, the context and way in which information is taught also matters. Take the Doppler effect: it is often taught using a video of a fire engine, police car or a train. If you’re a person with a disability – say, you’re Deaf – that video is meaningless to you.
I can think of other ways to teach you about the Doppler effect that have nothing to do with sound, but the default way – at least in a North American physics classroom – relies on this assumption that we all share the same frame of reference.
When I started my PhD in genetics at the University of Toronto, I was the first visually impaired biomedical PhD student there. There were no accessibility standards in my lab — I had to develop them. Twelve years later, when another student with vision loss started a PhD in a similar department, the same thing happened. There hadn’t been systemic change, and all of his supports had to be built from scratch.
When we eventually connected, his first comment to me was, “I thought I was alone.” That sense of isolation is one of the biggest barriers for persons with disabilities in science.
The education system acts like a narrowing funnel, squeezing out persons with disabilities at every stage. You pour children with disabilities into one side, and out of the other side, you get this tiny drip, drip, drip of qualified workers who stay in the field.
In that light, it’s often seen as better to divert students with disabilities away from science. It’s a lot easier to say, ‘Let’s not go there.’
But if we say that every human being has the right to participate in and benefit from science – which means that every human being has the right to knowledge about science – that changes the tenor of the conversation.
No longer can the conversation be, ‘You’re the first blind geneticist I ever heard of, so I’m not sure what to do with you’ (a true story; that actually happened in my third year). Instead, we think about how to make the teaching and the doing of science accessible to everybody and inclusive of everybody.
This framing shifts the focus. It forces us to consider the more than 1 billion persons in the world with disabilities, and ensures science and science education includes them.
We get rid of this notion that there isn’t a critical mass of scientists with disabilities, so who cares? Why should we bother? Because it’s a universal human right. We have to care. We have to bother.
As a scientist, I get asked all the time, ‘Why should I care about accessibility in science?’ The boilerplate answer is that diversity drives innovation and productivity. But really, the answer is that if we don’t include persons with disabilities, we limit our science – it will be inevitably flawed. We’re doing science wrong. The identity of a scientist is built around rigor and doing things well and properly. It’s about being meticulous, and developing the best possible answer that one can develop to a question. So, to say to a scientist that inclusion equals doing science right is much more meaningful than saying to a scientist inclusion equals innovation.
If participating in and benefiting from science is a universal human right, then including persons with disabilities is essential. It ensures that we do science well, and for the benefit of everybody – not just 80% of the population.
Dr. Mahadeo Sukhai, Director of Research and Chief Inclusion & Accessibility Officer – IDEA Team, Canadian National Institute for the Blind.
Dr. Sukhai is the world’s first congenitally blind geneticist. Mahadeo has more than 20 years’ experience as an accessibility and inclusion professional, and as a researcher within this space, as well as more than 25 years’ experience as a scientist, researcher and educator in the medical sciences and healthcare related disciplines. Dr. Sukhai is a leading expert on accessibility of postsecondary education and employment for persons with disabilities.
The International Science Council (ISC) has released its interpretation of the “right to participate in and benefit from science,” providing a clear framework for understanding this fundamental right.
The interpretation outlines the key obligations and responsibilities required to ensure universal access to science and scientific knowledge, while emphasizing the protection of scientific freedoms and the promotion of education. Aligned with the ISC’s Principles of Freedom and Responsibility in Science, it reinforces the vision of science as a Global Public Good.
The Right to Science
The International Science Council believes that there is a universal human right to participate in and enjoy the benefits of science, and that it is a responsibility of governments to create and sustain the opportunities of citizens to use this right.
The Right to ScienceImage by Yan Krukau on Pexels
Copyright
This open-access article is distributed under the Creative Commons Attribution CC BY-NC-SA 4.0 license. You are free to use, adapt, distribute, or reproduce the content in other forums, provided you credit the original author(s) or licensor, cite the original publication on the International Science Council website, include the original hyperlink and indicate if changes were made. Any use that does not comply with these terms is not permitted.
Disclaimer
The information, opinions and recommendations presented in our guest blogs are those of the individual contributors, and do not necessarily reflect the values and beliefs of the International Science Council
Read more about Reclaiming science as a human right: Comment from the UN Special Rapporteur in the field of cultural rights 
Read more about Advancing the right to science: A call for legal protections and inclusive participation 
Read more about Societal responsibilities of scientific collaborations between scientists and human rights organizations 