Recent news reports have shown that our supposedly private online activities are increasingly monitored, cataloged and monetized without our permission. For example:
• Last month, The Wall Street Journal reported on the largest social network company’s outreach to U.S. banks, asking for “detailed financial information about their customers, including card transactions and checking account balances”;
• This spring, one of the most popular LGBTQ-focused dating apps admitted that it was sharing users’ HIV status with outside data companies — without permission;
• And The New York Times in May reported on how teams of researchers had amassed the online data of hundreds of millions of internet users without any of their explicit consent. That data allows for tracking users, who almost certainly don’t know they’re being monitored.
As the Times headline asked about all this data, “Who’s Guarding It?” When it comes to online privacy, the answer is, increasingly often, “No one.”
That’s why it is time to consider new approaches to the handling of online data that give people greater confidence in, and a greater understanding of, how their personal online data is used. For America’s more than 56 million people with disabilities, this issue has special importance since their data security and privacy needs are often fundamentally different from those of other Americans. For example, in 2016, then-FBI Director James Comey famously urged people to tape over their phone and computer webcams as a privacy protection.
But, for individuals with visual disabilities, this “solution” is a non-starter. Real-time camera information and monitoring programs such as Aira, an augmented reality service for people who are blind or low vision, are as crucial to helping people navigate surroundings safely as they are rich with deeply personal information in need of protection.
Beyond differences in privacy needs, many persons with disabilities still encounter daily discrimination, in both the workplace and broader society, due to their disability.
The problems caused by this discrimination are why many prefer to not identify as having a disability. But if companies can capture, distribute and monetize sensitive personal information without transparency or consent, people with disabilities have effectively lost the power to control their identities.
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Imagine someone diagnosed with an illness who leaves a data trail while researching that illness. Under current federal rules, this person could be, as others already have been, served medical advertisements for an ailment they’ve kept confidential while someone they had decided not to share with is in the room.
If this problem remains unchecked, it threatens more than just our confidence in the internet. It promises inevitable real-world consequences as people have what they assumed were private, personal activities virtually sold to the highest bidder.
The goal of an online privacy solution should be clear: ensure that internet users have more control over, and understanding of, the information trail they create online. This can be accomplished through clear, consistent rules covering all aspects of what we do online.
A consistent, clear privacy standard is especially important for those with cognitive issues, as well as blind individuals and anyone with a vision disability. For these groups especially, inconsistent rules governing different online communities are likely to cause significant confusion.
As online privacy problems are considered, it is important that people with disabilities are included in the discussion. The internet can provide access to services necessary to live independently. The internet can also be a lifeline to employment or medical health treatment for those that cannot easily leave their homes. For these reasons, people with disabilities should have a sense of security and confidence in the privacy protections of their online activities.
The American Association of People with Disabilities stands ready to educate interested stakeholders on the concerns and special online needs of people with disabilities. This is the only way to fashion effective online privacy rules that meet the needs of our community.
Helena Berger currently serves as president and CEO of the American Association of People with Disabilities.
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