Susan Sontag's Illness & Disability

I wanted to use Sontag in my Monday caucus, but there's not enough room/time. She reminded me of how much I love theory.

These are free-flow drafts to play with ideas and get a sense of the landscape.


Sontag, Susan Illness as Metaphor
1989 Anchor Books

3
"My point is not physical illness itself but the uses of illness as a figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness--and the healthiest way of being ill--is one most purified of, most resistant to, metaphoric thinking."

7
"The solution is hardly to stop telling cancer patients the truth, but to rectify the conception of the disease, to de-mythicize it."

I love this, and it seems like this is potential approach to handling and working with disA in a meaningful and healthy way to approach it. It also provides a way for non-disA folks to engage with the content in potentially meaningful ways.

Engage and discuss it, and you take away the stigma from it. Look at ads for Erectile Dysfunction: who in the 1970s would have thought a Senator would or could run an ad for ED? And it happened in the 90s. Why not assume we can have the same approach , but in a useful way, towards disA where a frank discussion is designed to lower the stigma and emotional gutting which terms like this often cause?


AIDS and Its Metaphors
1989 Anchor Books

100
"Twelve years ago, when I became a cancer patient, what particularly enraged me--and distracted me from my own terror and despair at my doctors' gloomy prognosis--was seeing how much the very reputation of this illness added to the suffering of those who have it."

How much of this do we see in disability? This mirrors much of the discussion about self-image disempowerment, etc. [I don't have my DSR or my notes with me, else I'd name drop] that we've read about. The very reputation of disability, the very power of the word changes how we deal with people.

Similar with passing--for disability or queerness, and now for health. We can't let people know that we're sick. We do not even want to name it. If we do, then we summon up all the power that is associated with it.

Perhaps this is one of the reasons why people are constantly changing names for disorders, diseases, and social problems--they are constantly trying to shift, to dodge, to avoid the stigma and associations that are connected to a specific word or intention.

119
"From the beginning the construction of the illness had depended upon on notions that separated one group of people from another--the sick from the well, people with ARc from people with AIdS, them and us--while implying the imminent dissolution of these distinctions."

Again, substitute in disability for illness, and how much difference is there? The domination of medicalization is incredible.

133
"The most feared diseases, those that are not simply fatal but transform the body into something alienating, like leprosy and syphilis and cholera and (in the imagination of many) cancer, are the ones that seem particularly susceptible to promotion to "plague.""

I wonder if we could take this short text and then explore how people react with they see disabled folks in chairs, having seizures, or with bodies that act outside of their control. As one of the DSR readings quoted an author, these are not just issues of interpretation or perception, these are very real physical things that happen to bodies--and it is is not deniable. And it impacts the disabled significantly, not just in social ways, emotions, or humiliation, or enduring paternalism. Instead, there is the very real experience of a convulsion, lost limb, or what have you.

How much of our disabling of those with impairments is rejection of the potential that such things could happen to us--our bodies could rebel, act autonomously, and force us to rely on caregivers in order to take care of basic needs?