I’m always highly attuned to language—its nuances, implications, and effects—so much so that my partner is ready (if not always eager) on at least a weekly basis to hear the latest term or phrase that I find problematic. So here’s the latest: I’m troubled by the metaphors of battles, wars, fighting that often get linked to people with diseases or disabilities.
Two nights ago I was watching Extreme Home Makeover. As a side note, let me warn you never to watch this show unless you just want to sit in front of your tv weeping while simultaneously being vaguely embarrassed at yourself for doing exactly what the show’s makers want you to do. That pretty much describes my evening.
There are many, many problems with this show that other bloggers should feel free to launch into, but one of the things that struck me was the battle metaphors. The father of the family whose home was being remodeled has ALS, a progressive neurodegenrative disease. He seems like a genuinely wonderful person, with a great attitude and a passion for his family and his career. Everyone who helped with the project of rebuilding this family’s house seemed moved by this guy, and repeatedly throughout the episode folks recognized him and honored him for, among other things, his “battle against ALS.”
This is, of course, a pervasive way of framing people with diseases of all kinds. The ALS Association’s big statement at the top of every page on their website is “Fighting on Every Front to Improve Living with ALS.” There are a number of websites devoted to fighting cancer, fighting HIV, cystic fibrosis, multiple sclerosis, etc. The fight metaphor is often how individuals with these diseases discuss their own lives and priorities. And yet, it gives me a small, uncomfortable twinge.
I’d be politically troubled or offended if someone had referred to the little boy in the Extreme Home Makeover family as “battling” his life in a wheelchair, or if people suggested that my daughter was “struggling against” Down syndrome. Down syndrome and paralysis aren’t war zones, they’re simply parts of the lives of some people. And yet diseases seem to be different, certainly to many who are living with them. While Down syndrome has been part of Maybelle’s life since the instant she was conceived, ALS comes along later in life, and the fighting metaphor seems empowering and functional for many people.
But I’m not one of those people. I think that much of why this bothers me is personal. It’s not that I’m opposed to fighting. I’m an activist: I welcome a fight. I’m happy to aggressively challenge many things in this world that need to be shaken up. And yet, as a person with a brain tumor, I don’t want my health condition framed in terms of a battle. I am not someone who’s “battling” a brain tumor. Some scholars have examined this concept and have identified several ways that the metaphor is problematic—not only because it’s “inherently masculine, power-based, paternalistic, and violent” but because it frames the patient as the one who has to fight fight fight in order to win the war, and if they don’t win, then they didn’t fight hard enough.
I have a brain tumor, and there are things I need to do to take care of myself, but no level of armored-up embattlement is going to make it go away. I don’t love it, but it’s part of my body. As the scholars note, “There are conceptual weaknesses in the metaphor. There are no actual enemy invaders; the enemy is self…and the battlefield is the patient’s very body.” I feel that I’d like a rhetorical framing of my condition that allows me a little more coherence and peace.
Fortunately, I’m very happy with my house, so there will be no need for the Extreme Home Makeover folks to come over here and cheer for my fighting spirit in order to make themselves feel better.
Editor’s note: I promise that my next Girl w/Pen post will be about something other than my brain tumor! You all have been very supportive, but I think it’s time for some variety.