Four icons: A body in a circle, a phone with a lightning bolt behind it, a magnifying glass, and a smart watch with a heart on it.

Bodily Autonomy, Surveillance, and Access

Agency and control. Two words that have become the center of every accessibility class I teach. Autonomy, and technologies that support them are at the heart of the work that I do.

But let me back up, re-enter my body, and own this moment. I am sitting on my couch crying. It has finally hit — one more hit in the ongoing series of outrages. Yesterday’s Supreme Court ruling is takes away agency and control, personal autonomy, and puts it in the hands of the government. As a disabled person, my fight is often about who should decide things. The insurance company that has refused to pay for treatment I or a loved one needs, determining that it is “unnecessary”, overriding both patient and doctor. A medical board that defines my condition and the treatment for it in terms that cause many doctors to deny me care. A university representative who tells me that I cannot have an accessibility need met, or that meeting it will jeopardize my career and expose me to the anger of my tenured colleagues. A professional organization that determines (over my objections) that including me in an important professional peer review opportunity in an accessible fashion would harm the outcomes of that process.

None of these examples are about abortion, but in all of these cases, I was interacting with individuals who told me their hands were tied because even if they supported my requests to decide for myself what was right for me and my loved ones, they simply could not do what I asked because the decision was out of their hands. I’m not describing something new here, these are just examples of structural barriers to access. And so I fight. I take on my professional organization and work to change it. I push my way up the administration hoping someone will take my side. I fight the insurance company, the state healthcare authority, and anyone else who stands in my way. I travel to a different state and doctor for treatment, or pay for treatment out of pocket since I am lucky enough to be able to afford that.

Having to fight such battles can risk our safety, may upset people (or organizations) who have power over us, and may require breaking rules and laws that restrict our autonomy. And this brings us to the possibility of surveillance, which may be used in enforcement. Apps, and devices, have increasingly become part of life, and necessary for healthcare management and accessibility, both critical for disabled people.

For example, and here I shift into a more speculative space informed by those around me, I might use a Fitbit to monitor my heart rate. Or, although I am a lipreader, I might increasingly use captioning not only because of more online meetings, but even in person, because of masking’s impact on lipreading. I might use Internet enabled hearing aids that have access to my audio environment. I might depend on a smart speaker as an accessibility solution.

What happens to the data that all of these devices collect? The FitBit could discover that I am pregnant. Changes in vocal fatigue during pregnancy means voice recordings may be able to be used to detect pregnancy (not to mention that search queries might reveal my condition). It is possible that captions could be used for surveillance too. As others have pointed out, privacy has eroded. For example, it is common to see data collected on one platform impact experiences on another. If any of this information is disclosed to the state, it could be used against me if I need, or get, an abortion. This puts my personal autonomy over my body in direct conflict with my body’s accessibility needs.

There are many reasons that the supreme court ruling overturning Roe Vs Wade is concerning for people with disabilities, as highlighted in this coalition letter by AAPD, ASAN, awnnetwork, Be A Hero, Bazelon Center, DREDF, CAP, Little Lobbyists, and Women Enabled International. The sad truth is that for people with disabilities, and many other marginalized groups, yesterday’s ruling will not stop abortions from happening. But it will force people to make impossible tradeoffs between safety, access and autonomy.

Leave a Reply

Your email address will not be published.

62 + = 64