The UN side event, “How Can Digital Information Contribute to Achieving the SDGs for Persons with Disabilities?” at the 9th Conference of States Parties to the UN Convention on the Rights of Persons with Disabilities, was held on Wednesday, June 15, 2016, 8:00am – 9:30am.
As part of our investigation of how new data sources can contribute to various research areas related to disability, Data-Pop Alliance and the Secretariat for the Convention on the Rights of Persons with Disabilities formed the UN Working Group on Disability and Digital Societies this past April to explore how new data sources may be useful in informing development efforts for disability. The Working Group presented a draft of a white paper at the side event delineating the potential for digital innovations could provide useful in the advancement of the SDGs and other development initiatives for persons with disabilities.
The event explored how new forms of digital evidence, such as social media or crowdsourced data, could help fill the gap of a lack of data about the situations of PwD and contribute to the implementation of the Sustainable Development Goals (SDGs) for PwD, specifically SDG 4, 8, 10, 11, and 17. Speakers at the Side Event included:
- Maria Martinho– Social Affairs Officer, UNDESA/DSPD/SCRPD
- Jason DaSilva– Creator, AXS Map
- Toshiya Kakiuchi– President, Mirairo INC/Nippon Foundation
- Derrick L. Cogburn– Associate Professor and Director, IDPP, School of International Service, American University
- Sunita Grote– Partnership Lead Innovation, UNICEF
- Jordi Serrano– Consultant, World Health Organization; General Practitioner and Founder/CEO, UniversalDoctor
- Dorodi Sharma– Advisor to Chairperson, Disabled People’s International
- Arnt Hotle– Board Member, International Disability Alliance (IDA)
- Patrick Vinck– Director, Program for Vulnerable Populations, HHI/Co-Founder and Co-Director, Data-Pop Alliance
- Emmanuel Letouzé– Co-Founder and Director, Data-Pop Alliance
As global figures abut disability are outdated or incomplete, there is a dearth of evidence surrounding persons with disabilities, their rate, and their situation. Discussion at the event centered on alternative sources of information outside of traditional data gathered from censuses or surveys and their potential contribution to fill that lack. Digital technologies, such as AXS Map, AXS School, and Bmaps, apps that map accessibility of facilities and buildings for wheelchair users and others with mobility difficulties, are beginning to emerge as new goldmine for understanding the broader concept of the data ecosystem, development, and disability.
Speakers emphasized the need for collaborations, scaling, and open data sources in innovative technology initiatives for development centered on disability. In gathering the data from these technology initiatives, the CPRD and the SDGS must be kept in mind. This is especially important in developing countries, where 80% of people are disabled, yet knowledge is extremely lacking about persons with disabilities and the information required to reliably inform policy and development work does not exist. In gathering this information, access to employment, goods and services, democracy, and education can be increased for persons with disabilities.
An underlying message of inclusion though digital development echoed throughout the presentation at the Side Event. However, caution was noted surrounding the ethical challenges that could come with using digital information to understand the situation of persons with disabilities. These concerns included privacy, representation, oversampling, and ownership. As the nature of technology continues to change, the voices of persons with disabilities need to be heard at every stage of the transformation.
The side event concluded with a roadmap of what is needed to advance the SDGs for persons with disabilities, which included (1) scoping researcg and pilots, (2) capacity building and awareness raising, (3) policy and community engagements, and (4) funding.