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Privacy Perspectives | Why Privacy Is Not About Me Anymore Related reading: We’ve Got the Book on 1984


For me, using online services is mostly a question of convenience: Look at an actual map to get where I’m going, or let Google maps tell me my next turn and also track my comings and goings? Share a photo on Facebook–and give it up to their domain–so my parents can see my vacation as it happens, or wait until I’m home and show them in person? Snail-mail checks to pay my bills, or log all my account information into my bank’s website and pay them with a few clicks from my couch?

But for many people—notably those with physical disabilities—online choices are not simply a matter of convenience, they are a matter of independence, control, cost and even privacy.

Here’s what I mean: When downloading an app means being able to go to the doctor without having to bring a sign-language interpreter with you, the decision may be a financial one, or a matter of privacy or both. Mapping apps that offer audio turn-by-turn directions can mean visually impaired individuals getting where they want to go without assistance, offering them independence and control. These types of online tools and services can provide huge benefits for all kinds of people—but particularly for those with physical disabilities.

This epiphany came to me after meeting an extraordinary person at the IAPP Global Privacy Summit last March. Because of her blindness, she not only puts an unfathomable amount of trust in others, she must also rely heavily on technology in order to navigate the modern world.

Here’s what she helped me understand: In terms of data privacy, I am the lowest common denominator, and protecting data shouldn’t be about the lowest common denominator. It shouldn’t be about me and my want of convenience.

Consider for a moment the trust implicit in allowing an app to read you your health documents after they’ve been photographed using a smartphone. That’s what I think about when I think about the importance of protecting data now. Being a privacy professional, this person knows to wonder how that information is being processed and look into whether it’s being collected and retained. But certainly not everyone thinks of these things. Creating a safe environment for this type of use has the potential to offer people autonomy.

And that’s a really important job.

Since that time, I’ve read about some amazing technologies entering the market that aim to better the lives of people with special needs. An Austrian company has developed Blitab, a touchscreen e-reader that actually bubbles up braille. The surface is made of a smart liquid that they call “tixels,” for tactile pixels. MotionSavvy has developed subscription-based software UNI, a “two-way communication software for the deaf.” It uses specialized cameras and voice recognition to translate signs into speech and speech into text. You can even customize your sign-language dictionary and upload new signs for sharing with a wider audience. Both companies hope to release these products in 2016.

I look forward to seeing what these products can do. The fact that there are people capable of engineering these things is mind-blowing to me—as is the products' potential. One thing I couldn’t help but notice, however, is that while UNI has an extensive FAQ on its website, neither company acknowledges how it will protect the information it processes. This is not to say they haven’t thought of it or built it in. They may have, but neither company answered my request for a chat about privacy. (If you’re out there, I’d still love to hear from you!)

In the past, we’ve seen banks sued for violating the Americans with Disabilities Act for refusing to allow deaf customers to call them using relay services due to privacy concerns. Will these new technologies see similar hurdles? Can having a strong privacy program in place help them overcome these challenges and get their products more widely accepted, thereby helping more people? Perhaps.

There are plenty of other examples of ways in which protecting privacy is more than just staving off identity theft or mitigating reputational risk for companies. Summit keynoter Oren Yakobovich outlined how important privacy is to revealing injustices around the world. The circumstances he showed us can seem really far away for some of us, but what about victims of domestic violence searching on their home computers for ways to escape, just to have their abuser see ads for bus tickets when using the same computer? Another keynoter, Glenn Greenwald, spoke of the difference just one person–Edward Snowden, in his example–can make in the world and called on the audience of privacy professionals to recognize their importance in keeping the Internet a free and unsurveilled place for expression and exploration.

I’m grateful for what these speakers taught me, and it’s really making me look forward to P. S. R. at the end of the month, but mostly, I’m grateful for my chance encounter with this person at the Summit’s Privacy Bash—a meeting that gave me a whole new way of looking at what we at the IAPP—and you at your organizations—do. After seven years of saying, “No, it’s not THAT kind of not-for-profit. I mean, we’re not saving kids with AIDS in Africa or anything,” I now realize that while we may not be saving kids with AIDS in Africa, what we do has the potential to make a lot of lives an awful lot better.

So thanks, new friend, it was great to meet you.

photo credit: Show Me The Light via photopin (license)


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