A Note from Our Executive Director: 2023 and my personal quest for software freedom

by Karen Sandler on December 19, 2023

Just when I think that I've really grokked the implications of the technology I have woven into my life, I find that life throws completely new challenges my way that make me realize the extent of the work that we have ahead of us for software freedom.

Early this year, in February, as I readied myself for the excitement of receiving an honorary doctorate at KU Leuven, I felt my heart beating strangely. An already scheduled visit to the cardiologist revealed that my inherited heart condition had caused an irregular rhythm. I struggled to walk up even shallow inclines.

I have a heart condition I was born with, called Hypertrophic Cardiomyopathy (HCM). It's a condition that generally causes me no discernible symptoms, but I am at much higher risk of what they call "sudden death" than people without this condition (sudden death is what they call it when your heart ceases its function, for HCM patients, it's often because your heart is beating so fast that it's just fluttering instead of efficiently pumping). This is why I've had, for many years, an implanted pacemaker/defibrillator.

Irregular heart rhythms are common for HCM patients over time but need to be either reverted or treated with medication to live a normal life. The longer one is in an irregular rhythm, the more likely that irregular rhythm will stay and be non-revertable. Facing these new symptoms in early in the year, I needed to determine what I needed to do and whether my travel was still safe. To figure out how best to proceed, my electrophysiologist wanted to know about the history of my irregular rhythms. Luckily, I have my implanted pacemaker/defibrillator — designed to record that important information. Ostensibly, this is one of the purposes of having an implanted medical device: to collect such data to inform my treatment.

Years before, I'd decided to have this device implanted with the greatest of trepidation. Many of the key and important features of this device are implemented in software, not hardware. This is my second device (the previous one eventually had battery failure), So, twice, I've had to decide to make an unfair moral choice: do I maximize my chance of surviving with my heart condition, or do I allow installation of proprietary software in my body?

After I decided to have the device installed, I made serious efforts to actually verify the safety and efficacy of the software in the device myself. I filed Freedom of Information Act (FOIA) requests to review the FDA's approval process of this device. What I discovered horrified me: no one — not the FDA, not the patients, not the doctors, not the public — has ever reviewed the source code of the device, or even done direct testing of the software itself. Only the manufacturer does this, and the FDA reviews their reports.

This is a problem that will take a lifetime of many activists working for patient's rights to solve. In the meantime, I had to make the difficult moral choice whether to allow the device in my body, and ultimately I did - it was simply too dangerous to go without (doctors estimated a 25% chance of suddenly dying before I reached the age of 40). I tried to reduced the harm by choosing a device manufacturer that allowed the radio telemetry to be disabled for security reasons. This was a huge benefit, but ultimately it meant I picked a device made by a company that has a large presence in Europe, but a very small one in the United States. Little did I know that this choice would lead me to another difficult decision, which would again only be difficult because the software in the device is proprietary.

In February 2023, while I scrambled to have data in my device extracted before my trip, I discovered that due to the proprietary nature of the device, no one but a company representative could help me. The only one who worked In my city (a major city!) had gone on vacation to visit family overseas. The company had no other representatives available to help me. After much calling to different numbers of the company, I was able to get a list of hospitals and offices across the city that might have had a machine (oddly, they call them “programmers”) that could interface with (or “interrogate”) my device. Upon calling those locations, only a few actually had the programmers and none of those were able to give me an appointment before I left for Europe.

The helplessness that I felt was a powerful echo of how I felt years ago when I realized that my defibrillator was shocking me unnecessarily when I was pregnant. The only way to stop it was to take (otherwise unnecessary) medication to slow my heart rate down. Proprietary software, installed in my body, led me to no choice but to accept medical treatment that I didn't even need.

This time, even though I live in a major city, just one employee's vacation schedule meant my doctors could not diagnosis my urgent health problem. These heart devices are all locked down. Equipment between companies and also among newer models are *not* interoperable. I and my doctors could not access the critical information in my own body when I needed it most.

Ultimately, I made the difficult and potentially dangerous decision to go to KU Leuven anyway to receive the honorary doctorate. It was an incredible honor and I would have missed a once-in-a-lifetime opportunity. Outraged and frustrated again that I was forced to make a life-or-death decision that would have been much easier to evaluate were it not for proprietary software being the only option for heart devices, I nevertheless went.

Thanks to a fellow software freedom activist who helped me navigate the Belgian medical system, I was able to get my device interrogated there. I confirmed there was not immediate danger, and I used that information to come up with a plan for the rest of my trip and for my healthcare in the coming months. While the trip was a wonderful experience, I'm haunted by that helplessness that comes from having no control over technology I rely on so deeply.

When I returned my cardiologist insisted that I get a wearable device to monitor my heart rate. Knowing my feelings about proprietary software (from all of the times I advocated for software freedom in the doctors office!), he told me “you're not going to like the recommendation I have”: the doctor suggested I get an Apple Watch. As soon as I got home I researched all of the alternatives. I found an FDA approved device that has reliable heart rate monitoring but does not require constant contact with a proprietary mobile device or continuous connection to a centralized, proprietary service. The device is unfortunately proprietary itself, but fortunately has no GPS or other similar tracking, and doesn't mandate additional use of third-party proprietary software. This was still a painful compromise for me. I wish every day that I had access to its source code and the ability to modify its software to better suit my unique heart-monitoring needs. But this is my life and my health, and I'm grateful that I found a solution that I can use while I wait for (and advocate for and support) free solutions to catch up so I can use them instead.

Happily, since that happened, surgery has returned my heart to a normal heart rhythm, but my cardiologists have said that my need for the tracking device remains. I hate that I've had to incorporate more proprietary software into my life, but I'm so grateful for the treatment I receive and the years of life I am hopefully gaining.

The ways we rely on our software are not theoretical. They pervade every aspect of our lives, and we must make our decisions carefully — knowing that there will be immediate and long term consequences of those choices.

We should stand strongly for our principles but we must also live. At Software Freedom Conservancy we have the philosophy that it's not enough to just talk about our values, it's all about actually doing work that will move the needle towards achieving software freedom for everyone.

There is at least one, and perhaps a few, rather famous FOSS activists who are fond of declaring that they live their life without using any proprietary software. I am in awe of the luck that their privilege affords them. I had to make a really tough choice: put myself at risk of an untimely death, or put proprietary software in my body. I chose to live — and continue my work advocating against proprietary software.

This year, at SFC, we focused on our partnerships with right to repair organizations to ensure that the software right to repair (which could have helped me to get the information off of my proprietary device) is an important part of the previously hardware-focused conversations. We raised the alarm about John Deere's GPL violations after years of work on the matter. We stayed in regular contact with other organizations to support them and we worked on concrete action items, like the amicus brief we recently co-signed.

We stood up for the consumer and user rights that are baked into the GPLs and continued to push forward our lawsuit against Vizio — to make sure that everyone must be taken seriously when they ask for source code they are entitled to by the GPLs.

We know that users face real difficulty and often feel like they have few choices. We don't blame anyone who uses proprietary software; instead, we empathize with you because we live in the real world too and face difficult choices. We have campaigns such as Exit Zoom and Give Up GitHub to help you find alternatives to the proprietary software that you're using every day that you'd rather liberate yourselves from.

I do hope that (after you donate to SFC, of course!) each of you will do something to help improve the state of software freedom for yourself or someone you know, even if the solutions aren't 100% perfect, because they make a real difference in people's lives and demonstrate that we can do things differently. Help someone flash their phone with a free build, even though it has some proprietary components to remain functional (keeping it out of the landfill). Introduce someone to a free software app. Put Debian (or another free distro) on some old equipment to give it new life, even though it may remain a secondary device. Start collaborating with someone using a pad instead of centralized cloud services. I for one am looking forward to rooting a robot vacuum this holiday season to be able to control it with a free app that removes the need for centralized connectivity in order to operate at all. Maybe you'll do the same with a garage door opener? Sky's the limit when we work on it together. Let's keep it going bit by bit until all of our software is free.

Happy holidays.

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Tags: conservancy