How Being Disabled Affected My Bodily Autonomy

A while ago, I decided to treat myself to a nice and long warm bath. I got in the tub, closed the curtain behind me and tried to make myself comfortable and enjoy the moment. Then, as I was applying shower gel all over, I began to take a closer look at my body, in its natural state, still wondering how it looked so womanly when I still felt like a young girl. It was not long before I realized that one thing had not changed: the numerous scars that cover it. I became increasingly upset as I became aware of the marks left behind by my dozen different surgeries, the evidence of so many traumatic experiences that were now carved in my skin for the rest of my life. Every glimpse of my naked body was a reminder of what I have been through. I felt like every look at my naked body was a reminder of all that I had been through. In the end I lay in the bathtub, with the water up to my ears and cried until I got out, feeling defeated and sad.

Living inside my disabled body can be a constant battle, since it often hurts or simply does not respond to my commands, which can make me lose all sense of autonomy and control over it, but its natural constraints are not what I have found the most difficult to deal with. Instead, I have found that my relationship with my own body has largely been defined by how much it has been treated like an object of study and intervention by medical professionals, and how, because of that, it doesn't really feel like my own anymore. 

I may have been raised Catholic, but as much as I know the Bible says that your body is a temple, mine looks and often feels much more like a war zone. The reason is that, ever since I can remember, my body has been subjected to invasive tests and procedures that I could never refuse, which led to it essentially becoming what feels like a public space that anyone is entitled access to. I eventually became so used to always being poked, prodded, scanned and medicated against my will that my sense of privacy and control over my body feels close to nonexistent. While I was still a minor, I was never given the chance to say no, and the decisions concerning me were always being made for me by people who knew better. Of course, I am not saying that what I was put through was not necessary for my overall well-being, but it is still important to recognize the fact that there are consequences, which may only become apparent years later, sometimes in unexpected ways. For me, it has largely been about reclaiming my body as my own and getting used to making decisions. Even as I turned 18 and was finally able to legally make my own choices, the feeling of powerlessness over my body would not go away. I remember when, the first time I had to sign a consent form for a surgery, I pretty much froze in front of it and kept staring at my parents to get me out of that situation, scared out of my mind, because this sudden sense of responsibility and power felt so overwhelming and I still felt too ill-equipped to be in that position in regards to my own care.

To give an idea, some of the most invasive tests I've had over the years include: a gait lab, which implies making me walk around in my underwear with electrodes sticking to my body to see my gait; a urethrocystography0 flowmetry

Another aspect that I have found difficult to deal with has to do with reclaiming my bodily autonomy when it comes to romantic relationships. As a result of everything I’ve mentioned, I very much struggle with understanding the concept of consent and putting up barriers, because doing it feels completely foreign to me. When I was growing up no doctor ever asked me if they could touch or manipulate my body; they simply did it and I didn’t question them (though I always said I didn’t want to go) because it was part of the drill. Saying no was a choice I thought I didn't have, and that translates into me still being afraid to stand my ground. Even back when I was in elementary school, when we were first being taught about our “private parts” and how nobody could touch them, I remember being confused and thinking, “but why doesn’t this apply to me?”. It was almost like they were joking, but for some reason I never verbalized this inner contradiction. Also, so far I have only ever undressed in front of doctors, most of whom were male, so over time I have gotten incredibly uncomfortable in my own nudity because I cannot remove it from the medical context. I automatically associate the mechanical act of undressing with something that is going to hurt, so I just want to get it over with and don’t like seeing myself unclothed in front of a mirror. The sole thought of a romantic partner seeing me naked makes me feel scared and predisposed to pain instead of pleasure, and I still fear that when he asks me to take my clothes off for the first time I will automatically reply “yes, doctor” (sounds funny, but it’s true).

This leads me to a disturbing truth. It is well known that we, disabled women, are five times more likely to be sexually assaulted than our able-bodied counterparts. I have often felt at higher risk because I cannot run away or fight back if I get attacked, but now I’m realizing that part of that increased danger may actually come from how experiences like the ones I'm describing can blur the lines and make it more dificult to distinguish when someone accessing your body is inappropriate. I recently came across an interview of a disabled woman from 1973, in which she describes how she failed to recognize that she was being abused because of how used she was to others seeing her naked. She says: "It didn't seem like anything out of the ordinary. The way the janitor looked inside my nightgown, lifted it up and touched me seemed, I think, just like what had been done to me thousands of times before by doctors and other people who looked, pricked, poked and talked, all as if I didn't exist. All my early experiences in hospitals 'prepared' me for assaults. If you've never been given the chance to object to a doctor taking your clothes off to just look at your leg, or if you resist a doctor pulling them down no matter what you say, how are you going to realize that what the doorman does to you in an elevator is called 'sexual assault' and that you can and should say 'no' just the same? " I couldn’t believe what I was reading. I had no idea that this was such a common experience for women or just people with disabilities in general, yet another thing that happens when an issue is not talked about enough. Now that the discussion about sex education in schools is such a hot topic, I consider it extremely important to establish clear boundaries, starting from home, on when, how and by whom an intrusion is necessary, so that than any boy or girl in my situation will be able to tell the difference between an exam and abuse (because an abuser can also be a doctor), and in the future does not experience the same confusion that the woman in the testimony felt.

As difficult as some experiences have been, I decided to share them because over time they have taught me valuable things that I hope everyone knows. My body may not work like it's supposed to, but it's still mine. I can't always decide what happens to it, but I can always decide what is done to it. As pro-life as I am, in this case the phrase "my body, my choice" DOES very much apply, because for once it really is about having autonomy and freedom to choose for myself, to make decisions about my own body and no one else's. And it is a big, fundamental part of the right to live a life free from all violence that I will go to my grave defending.