Many might say that Karen Sandler, a former corporate lawyer turned executive director of the Software Freedom Conservancy (part of the not-for-profit sector), has a big heart. She is a senior figure in the free and open source software community, but I suspect not rich – and undoubtedly not earning what she could have done if she had stayed practising the law.
But no, this is not why Karen Sandler has a big heart. Karen suffers from hypertrophic cardiomyopathy, which means that she actually, physically, has a big heart. I recall the first time I saw her speak publicly about her experience. She has spoken many times now, and each time I hear her, I find her more engaging.
As a consequence of her heart condition, Karen is required to have a pacemaker/defibrillator connected to her heart, which will save her in the event of “sudden death” – something that she risks daily.
Of course a pacemaker is an electronic device, like an Amazon Alexa or any smartphone. And, like any other device in the connected world, it runs on software. The surgeon hadn’t really expected his patient to ask questions about that software, but of course, that’s what Karen did.
Disappointingly for her, it was difficult to get answers. The device lacks any real security protocols, like encryption, but the ‘human readable’ source code for it is proprietary, meaning she cannot see it. It’s not just invisible to her because it’s embedded inside her, but also because the manufacturer will not share the human readable form of the software.
In the event that this invisible software malfunctions, Karen would very soon meet her maker. This (understandably) has focused her mind on her relationship with software.
During her pregnancy, Karen, like many women, experienced heart palpitations. But in her case they were a bit more than she bargained for. “My device thought I was in a dangerous rhythm and shocked me repeatedly”, she explains over tea in her Brooklyn home.
This treatment was unnecessary and unwanted, but the only way to stop it was to take so many drugs to slow her heart rate down that she had trouble walking up a flight of stairs.
“Medical device manufactures definitely do not want pregnant women getting needlessly shocked, but since only 15% of devices go to people under the age of 65, it’s easy to see that there weren’t a lot of people in my situation…so the manufacturer hadn’t considered it.”
And hers isn’t the only case where device manufacturers have unprecedented power. All too often, and Karen explains, we are at the mercy of device and software manufacturers who, through no malicious intent, may not have all of our personal situations in mind.
“Like a car, or a refrigerator, I expect my device to last a very long time. What if the manufacturer goes out of business?”
Living with a life-altering device inside her, Karen has learnt just how vulnerable we are to the software we use every day. And in her mind, the only way to keep ourselves safe is to have access to, and control of, all of our tech. Isn’t it time we sat up and listened.