WorldCon: Death, Illness and Disability in Fantasy and Science Fiction

[kate_nepveu]

Handily, the Locus blog just put up a post on Disability and Sff, for two different takes on the topic.

See also skwidly's notes on this panel.

Death, Illness and Disability in Fantasy and Science Fiction
Jay Lake, Joe Haldeman, John Kessel, Edmund R. Meskys, Pat Reynolds, Ellen Klages
Does the future really only belong to the physically perfect?

I missed the introductions. Lake has cancer and it was looking very grim for a while. Meskys is blind. Klages has a sister with Down Syndrome.

(skwidly's notes state that Haldeman and Klages are also disabled.)



Kessel: actual future or SF treatment (re: description)? not sure. for panel work from disability toward death. nature disability going to change in future

Haldeman: Heinlein's "Waldo" is SF treatment of disaibility

Lake: one of unstated assumptions is that all been fixed in SF; fantasy different kettle of fish, ought to be lots of people missing limbs etc.

Klages: loves "Harrison Berger"; Geordi _Star Trek_ -- fixed or become Borg and doesn't matter

Meskys: read over 50 years ago, Arthur C Clarke juvenile, _Space Station_? boy wins contest, prize fly anywhere in world, space station below legal altitude, goes there; captain is military man who lost both legs & not hampered in zero G

audience: pretty sure Lester del Rey

audience: yes, I remember it

Kessel: essences of SF has been transcendence, solving problems, very seldom linger on someone who lives with a disability, wants to take us away from those things; previous panel about children in SF, Geoff Ryman made point that childbirth & child rearing are difficult & boring, want to get away from

[child _rearing_ boring? well, I guess that's an opinion]

Klages: opposite also true, SF stories where people deliberately disabled, cut off legs so can fit in the pod and do their job, fair number of stories where deliberately multilated to serve machine

Kessel: Varley, "Persistence of Vision," deaf & blind; Pohl, "Man Plus" transformed to fit Martian environment

Klages: "Flowers for Algernon"; mental disability really not played with

someone: Delany worked with some

Klages: Down Syndrome foundation huge supporter of right to life movement because most common reason for aborting child; innocence not necessarily disability

someone, still Klages?: Bernard Wolfe, _Limbo_, deliberate amputation to be in cribs, then artifical limbs

audience (person in scooter): SF tends to wants to fix people with disabilities & make them useful, e.g. _Ship who Sang_; mental disabilities, _Speed of Dark_, but once again, have to be fixed, and protagonist wonders what going to lose by being fixed; most mainstream way deal with disability is Heinlein, _Starship Troopers_, if couldn't fight could do something else (modern Israel also), integrated in society

Kessel: my understanding is that reading doesn't exist in book

audience, multiple: no, you're wrong

audience: turn back to Haldeman, his story "More than the Sum of His Parts"

Haldeman: greviously disabled, used nanotech to transform, becomes nano engineer but rendered insane, most brutally effective rapist in human history, had to put to death on Moon

Klages: theory that SF is the literature of disability because deals with the Other, alienness, and in daily life how treat disabled. If future belongs to physically perfect, there's never going to be another WorldCon: this is the place where it's okay to be.

[I questioned the first part of this later on; the second part has been more eloquently and convincingly questioned than I could ever do by mariness about her experience this year at Readercon.]

Reynolds: technology changes definition of disability. dyslexia was useful as hunter-gatherer, way of thinking in 2-dimensional space

Lake: heard that about ADHD, not dyslexia

Kessel: cochlear implants?

Meskys: deaf have own language and culture, too many get cochlear implants, lose that

audience: please use "deaf person" not "the deaf", don't separate out by language like that

Meskys: active blind people frown on euphemisms

audience: but not "the blind"

audience: is disabled, many times [in genre? life? missing noun in notes] treat like disability as defining quality instead of character ; like "black"

Lake: issue of normativeness: I am about the transparent (unmarked) case in American society, so have no cultural authority on this topic, but observation that people want to normalize what we see, example could imagine bookstore shelving in many different ways but people want genres, tendency to sort & label, tend to assume that thing to do is that normalize yourself, hear about cochlear implants & think "why wouldn't you" but don't participate in deaf culture, as sf author see responsiblity to think about

Klages: don't think anybody normal

audience: turn around, look at disability from different pov, future with enhancements & therefore not having those might be considered disability after a while; examples

audience: (something) not having telepathy

Kessel: _Brain Wave_

audience: _Nova_, villain can't use technology to become cyborg

Klages: Muggles

Lake: Peruvian potato farmers [I have no idea what this means now]

audience: invisible disability, until got glasses at 7 thought everyone saw world as mist (very short sighted & astigmatism), but technology didn't take away that ability; cochlear implants aren't reversible and don't give back

Haldeman: amateur astronomer, removed cornea because of disease, can perceive UV directly now; handicap or power?

[audience consensus seemed to be "power."]

Kessel: illness?

Klages: how many post-apocalypse novels start with plague

Kessel: yes but they follow the ones who don't die

Reynolds: Thomas Covenant, shades into disability. occasionally things like flu as plot device

Lake: _Child Garden_, cancer and plague

Kessel: _Doomsday Book_, plague but intensely realized and human

audience: illness of future? Dan Simmons _Hyperion_, Merlin sickness, daughter aging in reverse; what other kinds of future illness?

Meskys: Keats' clone has TB in same book

Lake: interesting idea: very long-lived people, what happens to mind as people around die

[Daniel Keys Moran's _Last Dancer_ has some of this]

Kessel: to shade over to death, _(something) History of Death_, talks about death as phenomenon that's no longer around in kind of objective way, illness that most don't suffer from [I have no idea if this was fiction or not now]

Klages: what if immortal and have disability? are you disabled forever but can't die from it, sounds like a really bad circle of hell

Haldeman: Le Guin story about planet where people are getting older & older and don't die but abrade away into lumps

audience: disability etc. tend to be used plot devices, story revolves around, any example where just happens

Klages: her _Green Glass Sea_, main character limps, not plot but defines character & relationships to her

Kessel: Lois McMaster Bujold

Lake: but Miles's character is driven by his reaction to his physical state, not incidential

audience: _Crystal Rain_ one-handed character, not plot

Kessel: Niven character loses arm, has psychic arm, then replaced

audience: SF wanting to fix things, hard for me to think that future without disease is at all realistic

Kessel: evolution at work

audience continued: how likely is it that all these future societies would have figured out how to completely eradicate disease; and isn't occasional sickness character-building?

Klages: really interesting to have virus-POV story

audience: Gene Wolfe "Peritonitis"

Lake: we're definitely getting ahead of infectious disease, much just don't get any more; but good point that always will be things that will surprise us

[me, now: also curing viruses once infected is very very hard problem]

Meskys: story in early issue _Galaxy_, by Wallace? "__ Escape", future society where almost every disease & disability cured, every so often some is so badly damaged couldn't be cured, society hated, decided to try and escape and set up own society; story ends with them hjacking starship; later expanded into novel _Address Centauri_ which destroyed everything, because once got beyond sun, something magic happened & all disabilities went away

audience: SF seems to skip a lot that any planet we visited with compatible biology would probably made us very sick, parallel European explorers

Lake: depends on how sciencey want to be, protein match is very serious problem

audience: utopian works, aspirational or wishful thinking? I'm legally blind, partially deaf, to wake up & see person next to me . . .

Lake?: most of us secretly utopians

Kessel: but then want to write stories about problems

Haldeman: also there are just bad writers, no problems in the future

audience: mental illness & social disability, Stat Trek "Tin Man" very subtle way

me: wanted to explore idea that SF literature of disabled because deals with aliens as the Other; hear this in discussions about race but my experience is that it ends up being a way to erase racial minorities and not deal with them--look, we have aliens instead! what does panel think about this with regard to disability

Klages: has picture of her holding her baby sister with Down Syndrome, just born, in which sister looks literally alien, her 6.5 year old self is looking with at her with part wonder & fear, labeled "First contact"; really profoundly other and she's my sister

[I had a very negative reaction on hearing this at first but I do recognize that it was an honest and probably a difficult thing to say, and I'm still trying to figure out how much my reaction to this and to other of Klages's comments (I edited out a couple "ARRGH"s that I put in at the time, but I bet you can spot them) is me knee-jerking in able-bodied sanctimony.]

Reynolds: excitement in reading Thomas Covenant, somebody like me; but at same time "The Other" is a problem like "The Disabled" & "The Deaf" are: doesn't deal with the complexities & nuances; SF draws attention to ideas of differences but really tends not to deal with disability; in preparation for panel, went to LibraryThing looking for books tagged SF/fantasy etc. & disability or disabled, incredibly small number of books, less than 100, most McCaffrey or Bujold

audience: point out two TV shows where just there, really bad Canadian French series _War of the Worlds_, used wheelchair, actor did not (also black); _CSI_, often see character using crutch because actor is double amputee, in series not doing anything about

audience: also _Threshold_?

audience: _Ironside_

audience: plans medicial & scientific conference for NIH, did one in which federal government assumes that as population gets older, almost all will get ill or disabled, how deal with; at least US gov't thinking about it some, and with a few ideas from SF (advisory committee on genetic testing, all new members are required to watch _Gattaca_)

Kessel: also one with genetic engineering [I have no idea what this means now]

Kessel: final thing, one of impulses behind cyperpunk is to abandon body; Singularity called the rapture for nerds; Yeats poem about tethered to dying animal

audience: think not fair way of looking at body

*end*

I would really have liked some more recent works to be discussed, but maybe there isn't much more: Moon, Bujold, post-panel C.S. Friedman's _This Alien Shore_, and Nancy Kress as in skwidly's comments, and?

Comments

[thette.livejournal.com]

I can see some of your ARGHs. I had one at the blatantly false statistic.

[tool-of-satan.livejournal.com]

Likewise.

[kate_nepveu]

Since she then went on to say that they didn't want Down Syndrome to be bred out of the population and someone else pointed out that it's a mutation so it doesn't actually work that way, I'm not surprised that the statistic itself is also incorrect.

[yendi]

Out of curiosity, did anyone mention James Alan Gardner's League of Peoples books?

[kate_nepveu]

Not that I recall, but if they didn't say the name I might not have caught it since I haven't read them.

[thistleingrey.livejournal.com]

Thanks (belatedly) for posting these notes as well as those for other panels. I'm finding it very useful to read them.

[kate_nepveu]

Glad they are.

[jaylake.livejournal.com]

"Peruvian potato farmer" was a reference to (I think) Charlie Stross' example of how the Singularity won't do much to affect the life of some people, ie, such as a Peruvian potato farmer. In SF we tend to view utopia as a monoculture, but why should that be? As opposed to, say, a widening of the culture gaps that exist today.

[fledgist.livejournal.com]

All cultural shifts result in some cultural gaps widening, and others narrowing. The Singularity, were it to occur, would widen some gaps immensely both within and across national boundaries, but it also would narrow others across national borders.

Utopias, by their natures, are inherently ambiguous. I would hate Plato's ideal state, and I suspect that Plato himself (as a poet) might be chafed by it.

[kate_nepveu]

Oh yes, that makes sense. Thanks.

[mariness.livejournal.com]

Hmm. It might have been interesting to bring up Locke, from Lost - disabled, then cured by the island - although it's difficult to go into the implications of what that means for him that too much without getting very spoilery.

The concept of disabilities as something needing to be fixed is very, very strong, to the point where I have been wondering about the effect on people who became disabled later in life. It's certainly not just in speculative fiction though.

[kate_nepveu]

Oh, I'd forgotten about _Lost_. The very first Locke-centric episode was the one I saw randomly and hooked me for about a season and a half, and then I got bored and stopped watching.

A lot of my reaction to this panel is trying to balance not pitying/denigrating/making assumptions about the experiences and wishes of people with disabilities, and not putting them on pedastals/forgetting that yeah, some pretty significant part of the things that fall under "disability" kinda suck.

[(Anonymous)]

I'm interested to see how Rand's loss of a hand will be handled in the next Wheel of Time books. Off the top of my head, it's one of the few fantasy series which has openly addressed disabilities of various sorts -- stilling/gentling and burning out, the madness of male channelers (including the hero), Rand's injury (and Mat's likely upcoming injury), the Wolfbrothers' threatened/actual loss of humanity, and so forth. Yes, some of these things are magically fixed over the course of the series, but others are obviously permanent and life-changing.

Jordan may be notably reluctant to kill off major characters, but he hasn't shied at seriously injuring and disabling them.

[kate_nepveu]

Good point, that will be interesting. I wonder what his notes were like on the topic--I presume they would be influenced by his experience as a veteran--and what if any research Sanderson has done on the topic.

BTW, if you come back, please sign a handle or somesuch to your post, for continuity of conversation?

[twinproject.blogspot.com (from livejournal.com)]

Sure, sorry about that -- frequent lurker here.

Emma B

[sig-info.livejournal.com]

I suspect John Kessel's mention of "_(something) History of Death_" is a reference to Brian Stableford's 1995 novella "Mortimer Gray's A History of Death" (http://en.wikipedia.org/wiki/Mortimer_Gray%27s_History_of_Death). A few years later, Stableford began his Emortality sextet.

[kate_nepveu]

Yes, I think that was it. Thanks.

[od-mind.livejournal.com]

Line 4 would be "Harrison Bergeron", the Vonnegut short story about equality implemented as enforced mediocrity (or worse).

The bit of nonfiction that occurred to me on reading this was Oliver Sacks's discussion of Tourette's patients. The chapter in _The Man Who Mistook His Wife for a Hat_ called "Witty Ticcy Ray" describes a patient who has to choose between being mentally quick and sharp (but extremely impaired by tics and other Tourette's symptoms) versus being medicated in a way that makes him mostly symptom-free, but mentally dull. Sacks (IIRC) speculates that the razor wit may also be a 'symptom', and inextricable from the others.

[kate_nepveu]

Right, thanks, I have a visceral dislike of the story and I was in a rush so I didn't look it up.

I also am very suspicious of narratives in which treating mental disorders removes or dulls the person's mental abilities, because you hear a lot of that in the creative world, and according to at least two people I know personally, is not true and thus an extremely dangerous myth standing in the way of treatment.

[od-mind.livejournal.com]

Hrm. I'm not sure what to make of that response. Sacks is about as reputable a source as I can think of. "One of the great clinical writers of the 20th Century (New York Times)", etc. Professor of Clinical Neurology, reporting his actual cases. I would want rather more evidence than "according to two people I know personally" to dismiss his professional characterization of the situation as "extremely dangerous myth". Especially if those two were not speaking specifically of Tourette's Syndrome, since the only thing most "mental disorders" tend to have in common is being mental disorders.

(And, as an aside, I'm always extremely leery of arguments that we should suppress evidence on the grounds that this evidence weakens an argument in a good cause. By all means, vet the evidence -- but if it passes muster, let us deal with reality as it is, not as would be convenient to our causes.)

[kate_nepveu]

I am suspicious of taking a single person and making that a narrative about "treating mental illness will destroy what makes you special."

[od-mind.livejournal.com]

It's not a narrative about 'you'; it's a narrative about Ray. (Or whatever his real name is.)

And, again, I think that "mental illness" is not a useful category here (if it ever is) -- Tourette's is not bipolar disorder, which is not PTSD, which is not schizophrenia. Frankly, it had never occurred to me to categorize Tourette's as a "mental illness"; I think of it as a neurological disorder.

I went back to the source, to double-check my memory. The case history makes it clear that Sacks worked diligently, with great pains over a long period of time, to alleviate Ray's Tourette symptoms. The breakthrough was as much psychological as clinical, and only achieved after some bad false starts. The result was a dramatic reduction in Tourette symptomology, and a happy life for the patient. But, as Sacks reports:
"During his working week, Ray remains 'sober, solid, square' on Haldol -- this is how Ray describes his 'Haldol self'. He is slow and deliberative in his movements and judgments, with none of the impatience, the impetuosity he showed before Haldol, but equally none of the wild improvisations and inspirations. Even his dreams are different in quality -- 'straight wish-fulfillment', he says, 'with none of the elaborations, the extravaganzas, of Tourette's.' He is less sharp, less quick in repartee [...] He no longer enjoys or excels at ping-pong or other games [...]"
On the medication, he also lost his extraordinary ability as a drummer, which had been a source of income. In the end, Ray decided to spend the weeks on Haldol and the weekends without. At the time of the writing of the book, he had been doing that for 3 years, and it seemed to be a good compromise -- but it was clearly a compromise.

The facts of the case are what they are (and are just one case history of many in the book, which is about neurological disorders). I think it's pretty clear that, for Ray, treating his condition with Haldol (which appears to be the best available treatment) both frees him of debilitating symptoms and does, in some ways, destroy some of what makes him special. Sacks does not advocate not treating Ray, and does not generalize Ray's case to anyone else. Are we to lie about Ray, or hide the facts of his case, because someone else might generalize improperly from Ray's case? I suspect that other Tourette's patients would prefer to hear about Ray's case, and how he has reached an accomodation that he can live happily with, to help them make their own choices.

[kalmn.livejournal.com]

ah! thank you. iirc, this was one of the panels i slept in through, due to coping with my disability.

(i partially kid; i suspect i'd be an olympian level sleeper anyhow, but the part where chronic pain causes fatigue is certainly part of why i don't do mornings at cons. unless this was not during the morning, in which case i just flaked on it.)

[kate_nepveu]

You're welcome. (It was at 11 a.m.)

[tool-of-satan.livejournal.com]

If Kessel was citing "The Persistence of Vision" as an instance of people being deliberately altered, then either he is misremembering the story or I am, and I think it's him. The story is about a community of people who are deaf and blind, but I don't recall anyone making them that way.

[kate_nepveu]

I don't remember now, sorry.

[tool-of-satan.livejournal.com]

People definitely choose to be deaf and blind later in the story, but I was pretty sure that the community was initially set up by people who were already deaf and blind and got together over a computer network. (Of course I don't have the story to hand to check, either.)

If Kessel was using it as an example of people choosing to alter themselves to get a job, or being altered by others, I don't think it works. If he was using it as an example of people choosing to alter themselves for other reasons, then I guess it's a reasonable example.

[tool-of-satan.livejournal.com]

Other examples:

In addition to Miles, from Bujold's oeuvre I would cite Taura (who essentially has a chronic illness) and Falling Free (the quaddies are not exactly disabled, but might as well be when on a planet).

In John M. Ford's The Dragon Waiting vampirism is treated as a chronic illness (Ford of course had severe chronic ailments, and I imagine his writing contains other examples I can't remember right now).

In Robert Charles Wilson's Spin one of the characters has MS, although not for a huge percentage of the narrative.

In Dave Duncan's Alchemist books the protagonist's employer has severe arthritis (I think it's arthritis) and has great difficulty walking. While this is a plot point on several occasions, the books are intentionally light, so not necessarily fodder for panel discussions.

[fledgist.livejournal.com]

I'd love to read a story in which arthritis is a plot point that makes it difficult to do the dishes, as well as walk.

[tool-of-satan.livejournal.com]

In 17th-century Venice (the setting for the Alchemist books) no one who can afford to hire servants does their own dishes anyway. But the character in question does usually have his apprentice (the protagonist) write for him.

[tool-of-satan.livejournal.com]

More Bujold examples: in the Sharing Knife books, Dag (one of the main characters) is missing a hand. There's also Tien's Vorzohn's Dystrophy in Memory, if you want to count that.

Another, somewhat ambiguous, Ford example is Diego Cadiz from Web of Angels. (Everyone in this universe gets life-extension treatments. A few people get made effectively immortal, but with nasty side effects.)

[kate_nepveu]

Great examples, thanks.

[kylecassidy.livejournal.com]

where was lois bujold?!

[kate_nepveu]

Ma'am Not Attending WorldCon?

(She was mentioned by the audience, but why the panel didn't put her books front and center, I have no idea. Other than the very . . . classic . . . focus of some of the panelists.)

[skwidly.livejournal.com]

You're going to injure your tongue doing that, young lady.

[grahamsleight.livejournal.com]

Mine too. It was in my mind having just done a Locus column on Butler.

[tool-of-satan.livejournal.com]

Thinking about this more, I'm going to have to disagree with Jay Lake's reported categorization of Bujold's Miles books as ones where disability is central to the story.

A few of the Miles stories do focus on disability: "The Mountains of Mourning," certainly, and I'd be willing to categorize The Warrior's Apprentice that way, with caveats. However, I just don't see it for any of the others. Miles' physical condition is occasionally important elsewhere, of course, but generally as a minor plot point.

Of course, dealing with his disabilities did shape his personality, but it strikes me as very reductive to say "X shaped the protagonist's personality, the protagonist's personality is very important to the book, therefore the book is about X."