“Big Brother is Watching You.”
― George Orwell, 1984
What comes to mind when we think of data? Maybe scales, statistics, or stories?
When I think about data several questions that come to my mind are: does data reveal something or do they hide? Are the numbers indicative of something or do they overshadow the human costs of a situation? If data is validated only through numbers, does a single-story count? If a single story or stories in general don’t count then what do the numbers represent?
Understanding data is imperative. However, in today’s tech-heavy world we often forget what data really stands for and find ourselves confused with concepts like algorithms, big numbers and statistics which either share or hide a human face and a story.
For example, when social media platforms or web engines use Artificial Intelligence (AI) to restrict and censor abortion related posts, they are actively denying a narrative that is essential to protect our rights. In fact, how many of us truly understand the politics of data as collected by social media platforms or messaging applications? We use these services without understanding that when a platform is “free”, it is we who are being bought and sold and we often willingly provide our information or data which is the commodity.
We as data are being monitored and our information/data is serving vested commercial interests and controlled by the State and market forces. Or in other words, our online activity is a double-edged sword – we are allowed to connect and express ourselves but we can also be subjected to surveillance, trolling, censorship and anything that we shared can be used as incriminating evidence against us. After all, the owners of these platforms are corporate entities that often work in tandem with the State and are geared towards profit-making and not for protecting our voices and our rights.
As advocates for safe abortion rights and other human rights issues we have to be seen and heard, while knowing that our online activities are being monitored and may be risky for us.. Based on Michael Foucault’s theory of ‘surveillance society’ which explains how all people are being constantly monitored, we can apply the same theory to the present to understand how digitization of society and advancement of tech has only enhanced the idea of surveillance society.
We have to engage with some relevant issues such as : Who is collecting our data and why? Which data is being collected and how? Was consent taken before and during the data collection process? Is the data confidential and secure? Are there any risks of breaching the data and possibility of misuse? What are the data protection mechanisms in place? These questions are extremely important as data represents a person and must serve a purpose to improve things for the individual and/or the community it represents. The answers to these questions will help us understand the nuances of data, prevent data breaches, invasion of privacy and its misuse as view it through a rights-based and social justice lens. It is even more critical for those of us who work in the context of Sexual and Reproductive Health and Rights (SRHR) and safe abortions rights which are still stigmatized and controversial issues. Data related to this becomes a highly complex issue – contentious and dangerous.
Due to the stigma around abortion, the data on unsafe abortions is often missing. For example, in India there is no offical data on the proportion of maternal mortality caused by unsafe abortion. The lack of data on unsafe abortion ensures that the issue remains hidden and makes it difficult for everyone – those who seek safe abortions are denied of correct information and safe services, social workers and advocates do not have the data to design programmes or advocate for policy level changes to provide safe abortion services and prevent unsafe abortions. The lack of data also makes it easier for those in authority and policy makers to push it off as a non-priority and a non-issue. (How often we have heard in our Asian communities that abortion is a sin and we don’t do that in our countries?!.)
There are other factors as well that affect abortion related data are - who collects the data, for what purpose or why, and how is the data collected. Regular raids in abortion clinics in Indonesia and the death of a service provider in custody proves how dangerous it can be if the data is collected for the wrong reasons and by those in power to punish people (abortion seekers and service providers both.)
Similarly, those who run helplines or hotlines in restrictive environments are constantly worried of being tracked down by those in authority, of protecting the privacy of their callers/users and afraid of the possibility of the data falling into the wrong hands which can lead to trouble for many.
How do we then ensure that our voices are heard when speaking up about these issues may land us in trouble in some situations? Self-managed abortions or medical abortions became a reality when a group of researchers investigated the increased usage of misoprostol in Brazil. If the incident remained limited in numbers it would not have attracted the attention of the researchers. . Therefore, numbers are important. For stronger advocacy and meaningful programmes, numbers can act as a guide and are extremely important. However, we will have to balance the numbers with the human stories as the issue is contentious and sometimes, big numbers will be impossible (due to the reasons mentioned already – shame, stigma, criminalization).
We at ASAP recognize this and therefore we ask to share your stories with us – the confidentiality of the stories are important but so is the message it can give out to others. After all, each person is a number (and vice versa) and each number has a story to tell that will hopefully destigmatize abortions. Finally, we have to humanize the data and remember the purpose of collecting it – to improve access to safe abortions and human rights.