Content Warning: elusions to sex, gender dysphoria, reproductive rights, eugenics, abortion, euthanasia, and ableism. This is a heavy one, folks.
Discussions of autonomy over our own bodies usually comes in the context of sexual relations and reproductive rights. Those of us with a conscience argue that individuals should have control of when (or if) they have sex, and who they have it with, and the only thing that really matters is that it occurs between consenting adults. Similarly, when it comes to reproduction, it is argued that the person who is having to endure the pregnancy should have the final say on whether or not they choose to go through with it.
While these discussions are incredibly important, I believe the scope of the conversation should be widened. In the medical setting, I strongly believe that in most cases the patient should have the final say over what is and isn’t done to their body, but experience has taught me that this does not always happen.
Adjacent to discussions of reproductive rights are those regarding the reproductive organs in general. There are a plethora of reasons why someone might choose to have a procedure such as a vasectomy or hysterectomy performed that have nothing to do with reproduction, and instead relate to gender affirmation or medical conditions such as cancer, poly-cystic ovarian syndrome (PCOS), or endometriosis. A recent Twitter survey I conducted showed that approximately one third of the people who had requested a vasectomy had had their request denied purely on the basis that they were too young or did not have children. When asking the same question in regards to hysterectomies, over 90% of respondents revealed that they had been denied access to the procedure for the same reasons. While neither scenario is acceptable, even this highly unscientific method highlights that some people have it much harder than others when it comes to having a say over their own body.
As someone who is highly unlikely to conceive even if I wanted to, I have requested a hysterectomy several times on the grounds that having a uterus will only ever cause me pain via the endometriosis. Each time, I have been denied. What astounds me is that when I had gall stones, having my gall bladder removed was not disputed in the slightest, despite the fact that not having a gall bladder has lifelong consequences in regards to diet, nutrition, and even an increased risk of colorectal cancer at a site where it would probably be inoperable.
That is not to say that I had total autonomy when it came to the treatment I received for gall stones. Pain management in particular was a struggle. Anyone who has experienced a gall bladder attack will know that opiates are the only type of pain medication that stand a chance of moderating the pain, and while these drugs do carry some risk, hysteria in regards to misrepresented data about opiate deaths (most of which come from illicit use, not prescribed medication; WHO have some interesting data on the topic here) made it nigh on impossible for me to have adequate pain management. When coming around from surgery I was offered nothing more than paracetamol, and chronic pain management is a constant battle to access medication that takes the edge off of the pain, never-mind eliminating it. Frankly, it feels like the only say I get in what does or does not happen to my body is in regards to what my next tattoo will be.
As someone with an academic and professional background in the medical field, I fully understand why medics must be cautious about what medical risks patients are exposed to. However, I am of the mind that once all the risks have been fully explained to a person with mental capacity (or their representative), the decision should ultimately be up to the individual. Indeed, throughout my nutrition degree the right to choose was constantly being brought up; it didn’t matter what our advice was, it was our job to provide and explain the advice, and it was up to the patient whether or not they followed it. We were expected to work within parameters set by the patient, so even if a patient simply expressed a dislike of a particular food, we had to respect that.
Of course, in a time-sensitive situation where the patient or representative cannot communicate a decision must be made on their behalf, but I strongly believe that this is the only circumstance under which making a medical decision for someone else is acceptable. This even applies to whether a patient lives or dies; I am thoroughly sick of seeing medical aid being prioritised away from disabled people because able-bodied lives are more highly valued, and hearing of disabled people being pressured into signing Do Not Resuscitate orders.
Lawyers and doctors have a nasty habit of declaring that a disabled persons quality of life is too low to allow them to live, even when the disabled person has clearly expressed that they wish to survive. The degree of autonomy we have over our own bodies impacts everybody, from the richest socialite to the poorest outcast, and as such the scope of the discussion needs to be widened. Autonomy isn’t just about reproduction, but how our bodies are managed and maintained; from what clothes we wear to whether we live or die.