How data and digitalisation are pushing human rights

A formula haunts the halls of the Global Disability Summit at Berlin's Gleisdreieck. It can be heard in various forums and workshops:

"No data, no action, no inclusion."

A man on stage in Hall 7.3 repeated this conclusive rule of three not far from the station where three underground trains intersect. "It's about moving the obvious forward." For a brief moment there is silence, as if nodding silently to Robert Mearns, Global Director for Social Development at the World Bank. Then the debate continues, as one of many at the Global Disability Summit.

It is the beginning of April. Over 3,000 people have come together to advance the situation of 1.3 million - that's how many persons have a disability worldwide. Hosted by the governments of the Federal Republic of Germany and the Hashemite Kingdom of Jordan, with the International Disability Alliance (IDA) as co-host, they are searching for progress through commitment over two days. "The meeting is not symbolic, but a signal," says Nawaf Kabara, President of IDA, at the opening event. The two previous summits elevated the issues to the political stage. "This third one is now about action."

It takes more than clicks and bytes to improve the lives of 16 per cent of the world's population. But it's hardly possible without it. That is why topics relating to data and digitalisation will meander through the dozens of forums over these two days. For example, reports in "Side Event 3" on access to health for indigenous deaf women document the state of affairs from some of the most discriminated sections: "Persons in the health professions are prejudiced," Ruci Senicula shares her experiences. "Aboriginal persons report ableism." The regional coordinator of the Pacific Disability Forum tells of disabled women in Peru who were forced into infertility and of many women in Kenya who complained about a lack of family planning. Pamela Molina reports something similar. "We have started collecting data in Bolivia," says the Executive Director of the World Federation of the Deaf (WFD). A start - with more than 70 million deaf people worldwide. "We know far too little about them, how many of them use sign language. This requires research carried out by deaf persons." In Bolivia, they interviewed 20 women. "Their testimonies were very harsh. All of them had no access to health services and limited access to education. They had all experienced violence." Data is therefore needed for these multiple vulnerable sections - women, indigenous persons and persons with disabilities. And so far there is hardly any. "We are unheard," summarises Pratima Gurung, President of the Nepalese Association of Indigenous Disabled Women. "And what's more, our territories are being poisoned. We are affected by this."

In Hall 7.3, a representative of the executive summarises the malaise of a lack of data. "It starts with knowledge, and knowledge starts with data," says Jordanian Education and Research Minister Azmi Mahafzah.

"Data is a key tool for measuring and identifying challenges."

Sitting next to him in the Disability Data Forum is Robert Mearns from the World Bank, who talks about the Disability Data Hub that has now been launched, which provides free access to global data broken down along development indicators and sectors. "Initially, we had 130 indicators, which was too many. We went down to 22 key indicators." One of these is whether people live in urban or rural rooms. The fact that the Hub is an open data bottle is also in line with the digital strategy of the Federal Ministry for Economic Cooperation and Development. The ministry has long recognised that digitalisation is not just a cross-cutting issue. It is not only being integrated into development policy processes in order to achieve set objectives more effectively and transparently. Digitalisation is simply unavoidable and is instead a tool of the present for shaping the future.

Several stands are set up outside in the foyer. Walid Dameh is standing at one, the prosthetist from the start-up 3DP4ME is showing 3D printed earplugs, customised to fit perfectly. He then pulls out a mobile phone and scans his hand. "This measures it completely," he says. The young company wants to use this software to help Palestinian amputees in Gaza get prostheses. "The images are taken there with the smartphone and are sent to us. We then produce a prototype. If it fits, we print it in carbon fibre." There are 3,500 people in Gaza with amputations as a result of the war. "We are ready."

Here at GDS, it is common knowledge that technology must make sense. Product developers at the summit do think about the lives of persons with disabilities, but with them. The body is not seen as a problem, but rather the respective environment. It's not about products that only deal with a detail of everyday life, which is not lacking in obstacles, but about real solutions that can make a difference.

This is also demonstrated by "Side Event 10", which focuses on the use of artificial intelligence (AI) to bridge obstacles between non-standardised language and automatic speech recognition programs - in other words, how persons who are hindered in their ability to communicate linguistically due to a disease, for example, can make better use of machines. "The world is made for people like me," says Christopher Patnoe, who works at Google as Head of Europe, Middle East, Africa - Accessibility and Disability Innovation. "But not for many others." The number of people with a non-standardised language is estimated at 250 million. Over the past few years, research teams at the technology company have developed an Android beta app using thousands of voice recordings and machine learning. "Google Relate" recognises and transcribes speech to give these people a voice; a significant impact that is becoming apparent. "AI is just a tool", says Patnoe, "the solution is people". Gifty Ayoka, founder of the Talking Tips Africa Foundation, is also on the workshop podium. Her organisation tested the app in Ghana. "My first impression was that it's brilliant, but it only works in English," she says - in a country where there are 80 languages. Hundreds of students have been trained to deliver the service provided. Gifty tells of a lawyer who stopped going to court because of her language, because the judge pretended not to understand her. "Now she talks about the app as her 'little toy'. We are seeing how this is transforming people's lives." Patnoe announces that the process will take an open-source approach. "You're going to get access to the prototype," he says. "We're going to democratise this information."

If the global community does not want to lose sight of the sustainability goals by 2030, it needs digital development leaps such as this app. And all people, women, children, with and without disabilities - as well as politicians.

"We need to use digital tools to improve lives"

says Alexei Buzu, the Minister of Labour and Social Protection in Moldova, "but we have to be careful. Some people think digitalisation will solve everything. But nothing replaces political will." Digitalisation needs to be organised. He is joined by Inmaculada Placencia Porrero, who works as a senior expert on disabilities at the European Commission on the accessibility of devices and services. "Standards are voluntary," she insists. "They are not enough, laws are needed." Then she adds: "And you need teeth to this legislation" - in other words, an assertiveness that gives such a law bite.

Back to the innovations outside the workshops, a visitor puts on a pair of VR glasses. A street scene of São Paulo appears on a monitor in front of her. Her task is to follow arrows on the stone by nodding her head to follow a predefined path. "We developed the Safe Path project in virtual reality to help people with cognitive difficulties to orientate themselves in traffic," says Alessandra Murolo Litmanowicz. The visitor turns her head 360 degrees to the left to keep an eye on a virtual road while "crossing" - a yellow warning square appears: "Oops," says Litmanowicz and smiles. "There was a car coming from the right." The Brazilian Instituto Jô Clemente (IJC) has realised the project together with the ALSTOM Foundation, and it is still in the adaptation phase. "In the second phase, we are setting up a scientific logistics guide, and in the third phase, we want to train people not only to navigate safely through traffic, but also to go to a virtual job interview and conduct it."

At this Global Disability Summit, two impressions come to mind. One is that the global community is still a long way from pervasive inclusion. And secondly, there is more awareness, effort and success on the way there; in general, we are all on an unstoppable journey into the future - digitalisation is a human project.

ILA President Nawaf Kabara said at the opening event: "For persons with disabilities, inclusion is a matter of life and death." Federal Chancellor Olaf Scholz called for this: "Let's leave the abstract discussions behind and break down the barriers." And then Jordan's King Abdullah II bin al-Hussein spoke:

"Inclusion is not just about access, but about recognising the inherent potential of every human being."

He then left the stage. He could have taken a shortcut down the stairs to his left. But he took the same route back as Kabara before him, who had rolled down a ramp across the podium in his wheelchair. Long, silent seconds passed during the king's walk down to his seat. They felt as if this recognition seeped into every head in the hall.