The UN Convention on the Rights of Persons with Disabilities creates an obligation for States to guarantee the full realisation of rights of people with disabilities. Often, ensuring that these rights are fulfilled requires the provision of services and financial support that enable the person to perform essential daily activities and engaging with the community.
Many of these support systems are undergoing significant changes in the name of efficiency, with governments adapting their social protection infrastructure to incorporate new technologies. However, the impacts of these innovations on the inclusion and autonomy of people with disabilities have not been sufficiently addressed.
What is the problem
Societies all around the world are undergoing increasing digitisation, as new technologies and data intensive systems continue to populate all sectors. This can have a unique impact upon the rights of persons with disabilities, whose health data - generally considered to be data of a particularly sensitive nature under data protection frameworks - is often processed as a pre-condition to accessing government services and support.
Whilst technology developments in the field of social protection have the potential to bring enormous benefits to many persons with disabilities by enabling their participation in society, the accelerated digitisation of many systems can mean that their participation is coming at the expense of their fundamental human rights.
Digitised government social protection programmes have been shown in some cases to seriously threaten the rights of persons with disabilities, who may be subjected to increased surveillance and intrusions upon their privacy under the banner of counteracting so-called benefit fraud.
Moreover, digital social protection programmes and welfare systems that provide much-needed disability benefits can unwittingly discriminate against persons with disabilities as a result of ‘black box’ automated decision-making processes that determine eligibility and leave individuals with no avenue for appeal or redress.
The algorithms used in such contexts often lack transparency and can operate with in-built biases due to poor training on non representative data sets. These processes determine what are often life-altering decisions, and when they get it wrong, the consequences for persons with disabilities may be dire.
What is the solution
In spite of the important benefits that new technologies and digital systems often present for persons living with disabilities, these must not come at the expense of their rights.
Generally, consideration of prospective beneficiaries’ right to privacy is rarely, if ever, at the heart of the development of digital social protection systems. This can pave the way for harms which may heighten the vulnerability and exclusion of persons with disabilities, leading to poverty and marginalisation.
This must change. Governments must put the voices and needs of people living with disabilities at the heart of social protection reforms, and ensure that technology does not become a tool to surveil them.
Further, governments should uphold data protection legislation and regulations in order to safely regulate, and limit, data collection and processing when it comes to persons with disabilities. In parallel, assessments of social protection systems’ compliance with non-discrimination and equality laws should also consider the impact of the digital transformation of social protection systems and infrastructures on persons with disabilities.
Governments should ensure that the use of digital technologies in social protection programmes, including as provided by third parties, does not result in discrimination or infringement upon the right to privacy of persons with disabilities, and preserves their rights.
Global funders of government social protection programmes must also conduct comprehensive human rights and data protection due diligence as a pre-condition to the approval of funding, and ensure that any systems they help implement or maintain does not result in human rights harms.
What is PI doing
PI is working to develop a greater understanding, and increase the visibility of, the differentiated impacts that the deployment of automation, digitisation and technology in the social protection field may have on the rights of people with disabilities.
To that end, we are conducting global research on the privacy of persons with disabilities in the context of digital social protection programmes. We are also advocating internationally for increased consideration of the right to privacy of persons with disabilities.
In parallel, we are working closely with Organisations of Persons with Disabilities (OPDs) to hear directly from experts working in the field of disability rights, and those with lived experience of living with disabilities, on the issues that they consider the most pressing.
Governments and companies must ensure that persons with disabilities are not left behind as social protection programmes moves increasingly into the digital sphere. Such programmes must be built taking human rights of persons with disabilities into careful account from the outset, so that these rights are protected and upheld.
