Jay Lake (jaylake) wrote,
Jay Lake

[cancer] A few thoughts on being seriously ill, with reference to privilege

Two aspects of illness that don't often get discussed or even recognized are social privilege and process complexity. These are things I've commented on before here on the blog, but they're much on my mind again this week.

Social Privilege

I have a well paid white collar job in a technical field. I work at home. In other words, my commute is two dozen steps, and I can sit down all day to perform my job functions. These facts combine to grant me a form of social privilege which has been critical to surviving chemotherapy thus far, and to surviving the next round as well, without total financial ruin. If I had a job that required commuting, or driving while on work hours; if I had a job that required standing up at all; if I had a job that required continuous attention without permitting unscheduled rest breaks; I would never have been able to handle things as well as I have.

Most people, well or sick, do not have jobs this convenient. This is a profound form of social privilege from which I benefit immensely. The fact that I even had the opportunity to achieve this position is itself part of being white, male, relatively tall, well-spoken and well-educated. Everything from the circumstances of my birth to the accidents of my employment history have combined to allow me to reach this point.

I am profoundly thankful for this.

Process Complexity

As for process complexity, I have to say that the three most ferociously complicated things I've ever done in my life in terms of paperwork, nitpicky requirements, tight deadlines and unexpected interdependencies are adopting [info]the_child, buying real estate, and being seriously ill.

When you fall seriously ill, the amount of paperwork and compliance in your life skyrockets. In the name of resource allocation, financial prudence and fraud prevention, American society forces an incredible burden upon its least able members. You truly have no idea how complicated this gets until you have experienced it yourself. It's a disastrous piece of social engineering that is just one more layer of punishment upon people already experiencing some of the worst moments of their lives, when they are the least capable of coping with the unexpected extra workload. A truly just and compassionate society would provide the reverse — an uncomplicated refuge of safety and healing not fenced in by reams of paperwork and arbitrary deadlines. Not to be in our America, unfortunately.

Note that I say the above as someone who is both highly competent at paperwork, and covered by good health insurance (at least in the American context of "good coverage"). This not even to reference the staggering financial burden that I must endure with my good insurance. Another privilege for me; that I'm capable of managing this, and have close friends and family to do it for me if I fall too ill to keep up.

Speaking of process complexity, I'm meeting with my attorney right before I go into chemotherapy, to deal with some open items in my estate planning and so forth while I'm still inarguably competent in the legal sense of the term. Oh, the things I have to think about right now.

Tags: cancer, child, health, personal, work

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