Why Privacy Matters to People with Disabilities

Privacy is a universal right, but for people with disabilities, it’s often compromised in the very systems designed to support them. Accessing essential services and benefits frequently requires the disclosure of deeply personal information, particularly, sensitive health data.

While this type of data is considered especially sensitive under data protection laws and is typically protected by strict confidentiality when shared with medical professionals, people with disabilities often experience less protection. Their information is routinely collected, stored, and shared-not only within healthcare but also with other administrative authorities—as a condition for receiving support—often in ways that are more invasive than in traditional healthcare settings.

Instead of focusing on understanding this population and their rights within the social protection system, governments have chosen to follow a narrative centered on “cracking down on fraud,” which often leads to harsher surveillance and controls rather than supportive policies and practices.

This creates a troubling trade off. People with disabilities are often forced to surrender their right to privacy in order to access the benefits and services they’re entitled to. The systems that should empower and protect them can instead become mechanisms of surveillance and control.

Worse still, the parameters used by governments to assess eligibility for support can be intrusive and opaque. Individuals may fear that everyday activities like going to the gym or certain shopping habits, could raise “red flags” in the system. This fear can pressure them to limit their own autonomy, avoid activities or refrain from making independent decisions, all in order to stay within the rigid and opaque expectations of benefit systems. As reported by The Guardian, the fear of being watched or misjudged can deeply affect daily life.

When privacy is sacrificed, the result is a system that does not trust the people it claims to serve. It punishes independence and erodes dignity. People with disabilities should not have to choose between their right to privacy and their right to live with the support they need.

Privacy matters. 

PI Work: Persons with disabilities