Twitter knows my political orientation. Facebook knows my age, race and gender. Google knows what time I open my documents and where I’m located.
But while these companies implicitly collect my data for apparent capitalistic ends, there’s something so much more traumatizing about giving information up voluntarily, even to those whose goal it is to help.
Every time I visit my neuromuscular clinic, I’m subjected to hours of uncomfortable inspection. A procession of specialists quizzes me, measures me, pokes and prods me until I’m on the brink of exhaustion. Each visitor takes meticulous notes on clipboards or computers, and it’s mortifying to watch them write down every detail of my daily routine, from the classes I’m taking all the way to the regularity of my bowel movements.
These doctors, therapists and social workers mean no harm. They simply want to ensure that I receive the best care available to me and that no hidden health problems go unaddressed.
I understand why their questioning and testing are necessary and how it helps. I really do. But that doesn’t mean that I enjoy baring my life to medical professionals and having every detail filed away in my records. I’m far more concerned about a data breach at my hospital than one on my favorite social media platform.
Part of the explanation for the information collection is the “sick role” that disabled people are expected to assume in order to receive treatment for their conditions. This concept, rooted in the medical model of disability, states that disabled people must do everything they can to get better, including giving up certain rights, such as that to privacy and autonomy. While my doctors don’t necessarily subscribe to this ideology, there seems to be an expectation that I will give them everything they ask for if I want to continue to receive their help.
From a very young age, I have been conditioned to accept questions from adults about all aspects of my life and medical condition. Most of the time, they come with good intentions — adults need to know how I do things so they can help adjust my position in my seat or assist with the purchase of expensive medical equipment.
But sometimes, it’s hard for me to determine how much information people actually need. Am I obligated to share my entire medical history to buy a commonly made wheelchair battery? Does a teacher need to know the name of my impairment to provide academic accommodations? Although privacy is incredibly important to me, I’ve accepted so much intrusion under the assumption of necessity.
I am slowly waking up to the fact that this is not always necessary, but I still struggle to determine where to draw the line. If someone doesn’t need to know something about me, should I still answer the question? Is the information too personal to share for the purpose of education? If so, how can I avoid answering without being confrontational or discouraging other more appropriate questions?
My questions have no easy answers and I know that I will be grappling with them for a very long time. I also realize that my position is better than most.
I’m part of a social media group for adults with spinal muscular atrophy, or SMA, and parents of children with SMA. Parents post about any SMA-related issues that they are facing, and other parents or adults with SMA chime in with advice.
Recently, the two factions got into a bitter conflict about images shared in the group. Adults with SMA argued that disabled children are too often denied their dignity and that parents should consider their children’s wishes before posting embarrassing or personal photos. Parents, on the other hand, claimed that they were posting photos to ask for help and that they were only doing it for the good of their children.
Like myself, my parents have always been extremely private people. They never post photos of me or my sister in any context, let alone to describe medical situations. And for that, I am so grateful, as I wouldn’t want images depicting my personal problems or myself in some state of undress floating around Facebook. Besides, most issues don’t require photos or personal details to be solved. Oversharing is something I intensely loathe, despite only having had secondhand exposure to it through social media.
In the right way, though, sharing information can be liberating. Over the past 11 columns, I have discussed everything from my bathroom schedule to my (lack of a) roommate experience, broadcasting to the world the same things that I’ve hesitated to tell my doctors.
The difference? It’s on my own terms.
I have actively made the decision to relay to you every single piece of information in every single one of my columns. You didn’t ask for it; I didn’t feel obligated to give it. I wanted to. In this context, I share my experiences not to fill out a medical log but to weave a larger narrative, complete with my observations and opinions on social norms and constructs. While sharing can be a source of my vulnerability, it allows me to reclaim my autonomy.