Rachel Bernstein: “Data has a powerful role to play in motivating and measuring social change”

June 2020

Rachel Bernstein is a senior human rights programme manager at Benetech – an Inclusive Futures partner and a non-profit technology company that empowers communities with software for social good.

Here, she explains why she is passionate about building technology with and for people with disabilities.

Rachel’s story

“Data, whether stories or statistics, has a powerful role to play in motivating and measuring social change.

“I’ve been working for almost five years at Benetech, and I have a background in economic community development and youth livelihoods, so the work with Inclusive Futures brings together my areas of expertise, nicely.

“I’m leading the development and implementation of an accessible data collection platform that will enable people with disabilities to learn about their rights to employment, and report on their experience trying to realise those rights.

“Despite advances in recent years that ensure censuses and other government surveys collect data on people with disabilities, there are significant barriers for advocates to use that data effectively. There are gaps in the available data that represents the voices and experiences of people with disabilities.

“Benetech has a history of nearly 20 years’ working on human rights documentation, and even longer in supporting access to information and education for people with disabilities. Through our work with Inclusive Futures, we’re building off of that legacy towards a vision of empowering the disability rights movement and inclusive employment initiatives, with technology and data.”

Creating a digital data collection platform

“We’re creating and implementing a digital data collection platform – Data for Inclusion – with and for people with disabilities.

“Our approach is to engage the full ecosystem and build software in collaboration with users.  Right now, we’re working closely with organisations of people with disabilities (OPDs) in Kenya and Bangladesh to create localised, accessible content to disseminate information about employment rights, and to collect data that facilitates these organisations’ work for inclusive employment.

“We are regularly testing the platform to gather feedback from our target users – people with disabilities and their supporters. With each test, we gain new information about how we can make the tools more useful to facilitate their work as advocates. Our work is more than just tool development. We also have complementary programming to build the capacity of local and national OPDs to use data and digital tools effectively in their work.”

Making tools and information accessible for all

“People with different disabilities have different accessibility needs. What’s really exciting is, right now we are working with Inclusion International to design our tools with and for people with intellectual disabilities. This is a community whose needs are often most marginalised, and therefore faces the most significant barriers to using technology as self-advocates. Focusing on the experience of these users first will ensure that the platform addresses these barriers, and precipitates features that benefit users with all types of accessibility needs as we expand the scale of implementation.

“So, what steps are we are taking to build an accessible platform for people with all different types of disabilities? Enabling variation in receiving and sharing information is key. The platform includes the ability to use symbols and text, as well as video or audio, to receive information. It also allows people to respond with audio, video, or text. This empowers users to share and receive information in the ways that work best for them.

“We also need to make the information itself, accessible. In this case, that means taking the complex language from the Convention on the Rights of Persons with Disabilities (CRPD) and transforming it into easy-to-read content and formats. Collaboration with local partners has also been central to disseminating locally-relevant content that includes rights, as defined by national law and resources available at the local level. Our local partners are creating content that is not only accessible, but also regional, using local languages, and explaining information in a way that makes sense for those living and working in the area.

“Ultimately, technology is only useful if it provides benefits to the user. The self-advocates who have been testing the Data for Inclusion platform so far have expressed that they see a lot of value in having tools that support their work, and they’re particularly excited about having mobile apps designed around their needs.”

Filling gaps exposed by COVID-19

“They’ve seen this need for digital tools increase during the COVID-19 pandemic. People with disabilities are being left out of the pandemic response and OPDs are really stepping up to support their members and their families. The work that they’re doing – from distributing food to ensuring that there’s accessible information about health, resources and social safety nets – means there is an even more pressing need for digital tools that facilitate the two-way communication of vital information, which people with disabilities need to hear during the pandemic.

“People with disabilities are the protagonists of the disability rights movement. By building digital tools with and for these heroes, we are amplifying and extending the impact of their advocacy. Through our work with Inclusive Futures, we envision the leaders of the disability rights movement across the world armed with tools and data to generate the evidence that they need, and able to ensure social accountability and realise the rights that they are guaranteed through the CRPD.”

A women smiling to camera.

Rachel Bernstein

Senior human rights programme manager, Benetech

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