Tech Policy Press – Internet Privacy Is A Disability Rights Issue
This op-ed – authored by CDT’s Ariana Aboulafia with former CDT intern Sydney Brinker – first appeared in Tech Policy Press on January 19, 2024. A portion of the text has been pasted below.
Imagine being forced to disclose sensitive data related to your health or identity to access basic activities and services needed to fully participate in society. Then, imagine disclosing that information repeatedly, as new services you’d like to take advantage of come online. Unfortunately, this scenario is the lived experience of many people with disabilities. On top of it being essentially impossible for anyone to understand online data practices, disabled people in particular are often in situations where they are unable to protect information about their health status, as they are often forced to choose between accessing necessary services and technologies (like standardized tests, rideshares, or assistive apps) and keeping their information private. This “choice,” of course, is hardly a choice at all.
People with disabilities may affirmatively reveal sensitive and private health information to receive an accommodation, including in rideshares and standardized testing. They may also incidentally (and largely unintentionally) share their disability status simply by using assistive or adaptive technology. The “choice” for a person with a disability is to divulge that information, or to either receive an inaccessible version of a service, or to not use that service at all – which impacts that person’s ability to live a full and independent life. Not only do disabled individuals have little control over whether or not to share this information in the first place, they also may have little knowledge as to how that data is processed, stored, and shared after its initial disclosure. For these reasons, advocates for disability rights and disability justice should prioritize the protection of personal and digital privacy as a central issue, and organize towards solutions.
…No disabled person should have to choose between accessing technologies that help them lead fulfilling, self-directed lives and protecting their personal information. And, people with disabilities should be able to benefit from technology without worrying that their health-related data will be used for nefarious or unknown purposes. It is vital that leaders in the disability community embrace internet privacy as a disability rights and justice issue, and support changes in law, regulation, and industry policies that will help protect the data of all individuals, including those with disabilities.