Our resident anthropologist Brittany Franck offers a thoughtful reflection on what is missing in Goal 18 from a rights and ethics perspective.
Goal 18 is an ideal opportunity to ensure that the SDGs, despite their flaws, can at least contain one goal that explicitly demands tangible steps towards inclusive and sustainable development. Goal 18 honors the fact that people and communities are capable of contributing to development, rather than standing by as passive recipients. It challenges the confinement of knowledge and information within ivory towers and closed government offices and questions why data collection often only involves communities as subjects of a survey, with the people whose faces are behind the data rarely, if ever, seeing it again. Goal 18 declares that we can no longer settle for the use of global estimates for vulnerable populations like people with disabilities, those affected by mental illness, and pregnant women. The absence of individual data presents an impossible barrier to service delivery and denies their fundamental value as persons and citizens. Goal 18 demands that platforms and systems be established so people can claim their personhood and mobilize their agency in shaping development knowledge and processes to reflect their priorities and aspirations as persons and communities.
We recognize, however, that for some, Goal 18 will not be enough. We share concerns that, without safeguards, it can pose risks of facilitating rather than combatting exclusion. We worry that it can, like many goals, be seen as simply a static target to achieve by any means, rather than a transformative action that can lead to ever-increasing inclusivity and sustainability in global development efforts. Namely, that its powerful potential will be missed by pseudo-inclusive data collection, or a focus on increased birth registrations alone rather than a critical awareness of whose registrations are increasing and whose aren’t, and what entitlements those birth registrations are connected to. It is crucial that we acknowledge and understand these concerns as we mobilize for inclusive development, so that we can be ever aware of what is at stake.
The importance of agency. In order for Goal 18 to establish the platforms and knowledge through which people and communities can empower themselves, data collection cannot be something that simply happens to people, a force coming down upon them, but instead a process of active, consensual, meaningful engagement. This requires safeguards against exploitation and manipulation. The right of people and communities to either consent or opt-out of data collection must be respected. We must also allow for flexibility and adaptation in categories for identification, and uphold the right of self-identification. This is crucial for peoples and communities whose existence has been systematically denied by governments. We can look to the case of countries where the denial of the existence of indigenous peoples has facilitated rights violations against these peoples, including forced removal from their lands and exploitation of their knowledge without consent. Thus, in data collection, hunter-gatherer, pastoralist, or other communities that consider themselves indigenous must be able to identify as indigenous in official data, not only to respect their personhood, but also to ensure that their rights are protected, and that rights violations can be documented. The same is true for peoples denied existence based on their religion, ethnicity, sexual orientation, gender, and others.
The need to protect data and the people they represent. As data collection is improved in countries, and with it the quantity and preciseness of data collected on each person, data privacy must be strengthened and upheld. Goal 18 must include mechanisms that ensure protection against birth registration data being utilized for genocide or systematic discrimination against ethnic or religious groups. It will be impossible to achieve, or even monitor progress towards, the SDGs of often-stigmatized or marginalized groups fear that data regarding health status, ethnic or political affiliation, or social preferences or behaviors can be used to fuel discrimination or violence against them. Let us consider countries where HIV/AIDS is stigmatized, homosexuality is considered a punishable offence, or the existence of transgender people is denied. If fear of social or legal repercussions prevents the collection of authentic and complete data, how can we measure SDG progress in inclusive health, education and other public services, especially if we truly believe that no one can be left behind?
Inclusion of hidden and uncovered populations: As data systems are strengthened, while we can applaud the increased registration data available, we must look critically and ask which populations are still being excluded and how they can be included. This will require commitment at all levels, from individuals in communities to national and global leaders. Some populations are hidden due to local beliefs and stigma, such as children with disabilities or people affected by mental illness. Transformation of such beliefs can only occur at the individual level, through a dialogical process within communities and households; it cannot be dictated or implemented from above. However, stigma can also be reinforced by governments failing to provide adequate and appropriate disability or mental health services. In this way, governments can support belief change at the community level by ensuring that there are benefits (and not disincentives) to registering hidden populations. We must also ensure that as registration improves, lack of registration documentation is not used as a justification for denying people their rights or access to services, for example refugees, migrants and people living in marginalized communities—registration must be driven by an authentic desire for inclusion, and not as a covert way for governments to perpetuate exclusion.
The call for open data. The call in Target 18.4 for open government portals must also not be used as an excuse to eliminate alternative provision of information. We must acknowledge that communities exist outside of the reach of internet, and that they have an equal right to access government information. We must also demand that government portals are accessible to people with special needs, and ensure that this is considered in infrastructure planning. For far too long, the denial of accessible and appropriate information and platforms for knowledge sharing has facilitated violations against the rights of people with disabilities, minority ethnic groups, indigenous peoples, and other groups. In this way, open government portals must be seen as another part of a process of opening the government to community participation, with a commitment to inclusion. Although an open government portal is an important step towards open government, this target must be considered “in progress” until government forms and entitlements and legal, financial and development-related information is accessible to all peoples and communities. We also need to ensure that data reflect both qualitative and quantitative concepts, for which the Data Revolution Group presents numerous possibilities. Developing and implementing systems for collecting qualitative data may require more time, but this must remain a goal. Clearly quantitative data is needed immediately to justify the breadth of services needed. But how can we measure whether these services are actually useful and appropriate for different communities without qualitative data?
There is a tremendous promise in Goal 18. For too long calls for community-led, people-centered development have fallen flat, their transformative power sapped out of them as they are reduced to numbers of people “consulted” or numbers of people whose “capacity was built”. Let us consider the concerns in this response so they can guide our actions, and place people and meaningful data back at the center of our development movement.