Time & time again we’ve seen people who have never had any serious medical conditions thriving on informing the sick and disabled on what is appropriate ‘illness decorum.’ This ranges from jobs threatening to dismiss an employee because they did not handle their illness to their standards, to being questioned if we really need (insert medical treatment/time off/certain accommodations), to judging people on how they behaved during medical emergencies or on days that their illness hits full force.
Why does this happen? Many different reasons, but one of which being that illness is only tolerable to the non-sick if it fits their mold. If it isn’t too scary or disruptive to our productivity, everyday life, and social norms.
Most healthy people are genuinely fearful of becoming disabled or ill. Whether this is a conscious thought or not, it lingers. To counteract this fear of illness, many find comfort in imagining somehow that we as a species can still find ways to be stronger than it: that our minds and bodies alone can still retain some semblance of normalcy and decorum throughout. The idea of being ill to many is only tolerable when the sick are imagined as level headed, in-control, not falling apart emotionally, always hopeful, still finding a way to put our jobs and other people first, and always making decisions based on able-bodied standards of rationality. It’s easier for many to just blame the sick person for doing something wrong when they don’t adhere to these standards than to face the truth: that illness isn’t always something light & breezy that we are all capable of handling with grace, and that you won’t understand it fully unless you experience it.
So when the sick and disabled don’t act in ways they would when they’re having a better day, able-bodied people express frustration, annoyance, or confusion with the sick person… but under that is an attempt at trying cover up a fear of what it would mean to become one of us. What it would mean for illness to not be something we can just ‘pick ourselves up by our bootstraps’ and power through. Illness is only tolerable to the non-disabled when it it on their terms, when it’s not too threatening to able-bodied life. When they watch illness change how a person relates in the world, many freak out. Illness becomes too threatening.
For anyone that has experienced illness (genuine disability or illness, not common ailments that you recover from without hospitalization or intensive treatment) we know this is not the case. Illness is complicated, messy, and not out of the range of normal human experience. Everyone handles it differently. Illness doesn’t look the same everyday or in every person, even if it is the same condition. There are days when you are able to put in the effort to do what you need to, and there are days when rational thinking and concerns about our careers and family and daily life completely go out of the window. I don’t know how many of us have ever had an experience when we have genuinely feared for our lives, but it is not a time of composure and hope that the non-sick want it to be in an attempt to abate the terror they have of being ill.
Illness Decorum 101, as dictated by the Able-Bodied:
We must still have the mental space to think clearly and coherently about our jobs, updating colleagues and bosses in what they deem to be a timely manner. We must have the energy and desire to engage in conversation and update people about how we are doing. We must be grateful to the medical system, even if it might kill us. We must always be hopeful. We must have the mental capacity to think through every option, even in times of panic. Actually, we should never panic. Panic produces “irrational” thought. Rationality is key. We can’t do anything controversial or risky to get medical care, even when backed against the wall. Even if the system is designed to be stacked against us. Even if we may die if we don’t try. We must always be kind. We must never be angry or frustrated. We must always have patience. We should still be putting our children/partners/parents/job/random people first. We must never panic. We must never panic. We must never panic.
The majority setting standards for how minorities should act/behave/think in the face of their own experience is nothing new. Having to explain to healthy people (who will likely never be in our position) why we couldn’t act in the specific mold they made up for us to follow during a medical crisis is nothing new. The way we chose to handle our disabilities/illnesses being held against us by people that don’t have to make the choices we have to everyday is nothing new. Being told what is appropriate behavior by people who have privilege & are setting up the system that oppresses us is nothing new. Many have been fighting this form of oppression for years.
This kind of fetishization of productivity and anti-illness that American culture is sworn into is one of the most insidious concepts to penetrate our minority group. Sick and disabled people die trying to fit this mold. People lose jobs, friends, family, and partners over not fitting this mold. I don’t know the right way out of this as a society, but I can propose this: If we as a country start to provide a humane quality of life for the disabled, if we improve access to healthcare and insurance, if we stop putting youth, beauty, & productivity on a pedestal, and we begin to accept illness as an innate part of the human experience… the fear will go down. We will accept illness and the disabled experience for what it is: natural, messy, complicated, nuanced, human, and none of our business to comment on or hold against anyone if it isn’t about us. We won’t give anymore unsolicited ‘I would’ve done this…’ or ‘I’m offended you didn’t …’ We will stop talking behind backs while smiling to faces. We will trust this isn’t about us, and that people who are experiencing illness are doing their best. We will aim to understand, not reprimand. Hopefully, we will work on our own fear and pride enough to be able to meet people with genuine, unfiltered empathy.