Thursday, April 29, 2010

Bizarre Things Purported to Cause Autism: Cells from Aborted Fetuses

EXECUTIVE SUMMARY: A pro-life advocacy group called Sound Choice Pharmaceutical Institute has claimed that the increase in autism-spectrum diagnoses in the U.S. over the past two decades is due to the presence of cells from aborted fetuses in vaccines introduced during that period. The evidence they have for this consists of chronological "change points": years after which the rate of autism incidence begins to rise more sharply than it has before. They connect these change points with developments in U.S. immunization practices that might mean more exposure to vaccines made from fetal cells.

I think the idea that those two developments are related is a ridiculous one, first because it is physically impossible that the trace amounts of human cell components still found in the finished vaccines could trigger such a massive immune response even in very sensitive children, and second, because the timing of the change points they've chosen to highlight is an artifact of the autism-incidence statistics they've chosen to use, and third, because many other factors track with those change points that have a more obvious, immediate effect on reported autism incidence, like revisions of the Diagnostic and Statistical Manual (DSM), changes in special-education policy, etc.

There's a blog I used to read occasionally called Autistic Conjecture of the Day --- sadly, it's now open only to invited readers --- that dealt with every idea the blogger had ever encountered for what causes autism. Some of these ideas would be mainstream, some would be cutting-edge, some would be controversial, and some would be just plain off-the-wall.

Since discovering that blog, though, I've loved that idea: simply collecting all the different ideas in one place.

So I've decided I'm going to do my own (intermittent, open-ended) series on Bizarre Things that have been Purported to Cause Autism! Because this is a perseveration of mine, as well, and you can never have too much debunking of wacky ideas on the Internet.

The subject of this inaugural post in the series comes courtesy of fellow feminist skepticblogger Amanda Marcotte: according to pro-life columnist Jill Stanek, and this story on the LifeNews website, the "worldwide jump in the incidence of autism beginning in 1988" can be traced to the use of human fetal cells in the measles-mumps-rubella (MMR) vaccine.

Quoting the pro-life advocacy group Sound Choice Pharmaceutical Institute, Stanek argues that the three "change points" --- points at which the slope of the line on a graph of autism incidence changes --- occurring in 1981, 1988 and 1995 coincide with three changes in which vaccines are recommended for very young children. In 1981, the CDC's Advisory Committee on Immunization Practices (ACIP) approved a rubella vaccine called Meruvax, which is made from live attenuated rubella viruses that have been incubated in human fetal cells from the cell line WI-38; in 1988, a second dose of the MMR vaccine was added to the recommendations; and in 1995, a chicken-pox vaccine (Varivax) was approved that, like the rubella vaccine, contains live attenuated viruses that are grown in human lung cells. The chicken-pox vaccine used cells from two different cell lines, WI-38 and MRC-5, both of which were cultured from lung cells taken from human fetuses* that had been aborted.

I'm going to address the autism-incidence statistics Stanek's sources relied on later in this post; for now, I'd like to concentrate on what is, for me, the biggest problem with her claim that human fetal cells used to grow the viruses used in common childhood vaccines are causing autism: where is the mechanism? The mercury and MMR hypotheses, flawed as they are, at least propose some physical process by which the brain's development can be disrupted as a result of vaccine exposure.

Though neither Stanek nor the newsletter from which she quotes goes into how residual fetal cells in vaccines might have such an effect on an infant's nervous system, this July, 2009 editorial by Sound Choice Pharmaceutical Institute president Theresa A. Deisher makes a bold suggestion:
How could the contaminating aborted fetal DNA create problems? It creates the potential for autoimmune responses and/or inappropriate insertion into our own genomes through a process called recombination. There are groups researching the potential link between this DNA and autoimmune diseases such as juvenile (type I) diabetes, multiple sclerosis and lupus. Our organization, Sound Choice Pharmaceutical Institute (SCPI), is focused on studying the quantity, characteristics and genomic recombination of the aborted fetal DNA found in many of our vaccines.

Preliminary bioinformatics research conducted as SCPI indicates that "hot spots" for DNA recombination are found in nine autism-associated genes on the X chromosome. These nine genes are involved in nerve-cell synapse formation, central nervous system development and mitochondrial function.
So, the hypothesis here is that fetal DNA left in the sample of live virus that makes up the MMR and chickenpox vaccines is merging with people's own genomic DNA and scrambling their genes.

Like all good science fiction, this fantastical scenario springs from fairly plausible conceptual roots: it's true that one type of virus --- the retroviruses (like HIV) --- can embed its tiny genome within its (human) host's much-larger genome, and that some other viruses, like herpesviruses, can keep their genetic material dormant within a host cell, and thereby persist in that host for years, or even decades, with periodic reactivation of its infectious cycle when the host is under physiological stress; it's also true that a few people do suffer severe allergic reactions to some of the ingredients in vaccines, including --- what's most relevant to this post --- cells used to incubate the vaccine's active component, the virus.

In this 2003 article in Pediatrics on vaccine safety, Drs. Paul Offit and Rita K. Jew discuss the relative dangers posed by all the different vaccine additives: preservatives (like thimerosal, phenol, and 2-phenoxyethanol), adjuvants (aluminum salts), stabilizers (sugars, amino acids like glycine or monosodium glutamate, proteins like gelatin or human serum albumin), and manufacturing residuals (into which category the fetal cells Dr. Deisher is so worried about would fall, along with egg proteins, yeast proteins, formaldehyde and various antibiotic drugs).
Residual quantities of reagents that are used to make vaccines are clearly defined and well regulated by the FDA. Inactivating agents (eg, formaldehyde), antibiotics, and cellular residuals (eg, egg and yeast proteins) may be contained in the final product.
Cellular Residuals

Egg Proteins
Egg allergies occur in approximately 0.5% of the population and in approximately 5% of atopic [i.e., allergically hypersensitive] children. Because influenza and yellow fever vaccines both are propagated in the allantoic sacs of chick embryos (eggs), egg proteins (primarily ovalbumin) are present in the final product. Residual quantities of egg proteins found in the influenza vaccine (approximately 0.02-1.0 μg/dose) are sufficient to induce severe and rarely fatal hypersensitivity reactions in children with egg allergies. Unfortunately, children with egg allergies often have other diseases (eg, asthma) that are associated with a high risk of severe and occasionally fatal influenza infection. For this reason, children who have egg allergies and are at high risk of severe influenza infection should be given influenza vaccine through a strict protocol.

In contrast to influenza vaccine, measles and mumps vaccines are propagated in chick embryo fibroblast cells in culture. The quantity of residual egg proteins found in measles- and mumps-containing vaccines is approximately 40 pg --- a quantity at least 500-fold less than those found for influenza vaccines. The quantity of egg proteins found in measles- and mumps-containing vaccines is not sufficient to induce immediate-type hypersensitivity reactions, and children with severe egg allergies can receive these vaccines safely.
This article does not mention the rubella vaccine, Meruvax, which is propagated in human fibroblast cells in culture, but because the vaccine is prepared in the same way as the measles and mumps vaccines (just using cultures of a different cell type), it's probably safe to assume that residual human cell components are present in the same minute quantities. Chances of severe immune response to residual cell components should be even lower for the rubella vaccine than for the measles or mumps vaccines since the attenuated rubella viruses are grown in human cells as opposed to chicken cells, and human cells are less likely to trigger an immune response in humans than nonhuman cells, since our immune systems work by distinguishing "self" from "non-self" antigens.

As for the DNA from those residual cells somehow integrating itself into people's genomes, I don't think that's even possible. DNA rearrangement like that doesn't happen on its own, whenever two different molecules of DNA encounter each other; retroviruses that inject their genomes into a host cell's genome are able to do so because their protein shells (capsids) also include all the requisite enzymes for doing this --- reverse transcriptase, for converting the virus's RNA genome into a length of double-stranded DNA suitable for patching into a host cell's chromosomal DNA, and, crucially, an enzyme called integrase, which cuts the ends off of both viral and host DNA and then pastes them together. This enzyme exists only in retroviruses and some bacteriophages --- humans have nothing like it, and neither do any of the viruses present in the MMR or chicken-pox vaccines.

Expecting one piece of DNA spontaneously to insert itself into another because they're in the same cell and might happen to bump into each other is as misguided as placing, say, two whole eggs, a bag of flour and a bag of sugar out on your kitchen counter and leaving them there overnight, with the expectation that they will have turned into a cake by the time you get up the next morning.

Finally, let's look at the graph Jill Stanek reproduces in her column, that purports to show an increase in autism incidence coinciding with those three additions to the list of recommended vaccines.

The smaller, inset graph making up this image comes from this 2008 article in the Archives of General Psychiatry, tracking the number of children in California who are a) diagnosed with autism or a related condition like Asperger's syndrome or PDD-NOS, and b) receiving services from the California Department of Developmental Supports.
You can see that this graph has three pairs of lines representing three different age cohorts of children (with the incidence of autism measured two ways for each group; hence the double lines) where the modified version in the SCPI graphic has only one --- the (merged) middle pair of lines, representing the rate of autism diagnoses occurring among four-year-old children each year. The top two sets of lines --- showing the incidence data for four- and five-year-olds --- do trend sharply upward starting around 1995, but for the third set --- three-year-olds --- the rise is much less pronounced, and starts later.

The larger, background graph comes from this article (full text here) in the March 15, 2010 issue of Environmental Science & Technology, in which two EPA researchers look at autism-incidence trends worldwide over the past fifty years or so by looking at three large autism-incidence studies from the U.S. (this report from the California state Department of Health and Human Services' Department of Developmental Supports), Denmark (Lauritsen et al., 2004), and Japan (Honda et al., 2005; full text here) and estimating each subject's year of birth, and then plotting the number of autistic people born between 1960 and 2000.

The EPA study found just one "changepoint year": 1988. After that point, the slope of each line representing each of their four data sets (each of the three already cited, plus a "worldwide" data set that includes all of those three put together, plus a bunch of other studies too small, or too variable in timing or methodology, to be analyzed on their own) jumps to a value several times that of the slope of the line prior to that point.

That discrepancy is also reflected in the raw data pre- and post-1988: in California, the average incidence of DSM-IV Autistic Disorder was 5.7 cases per 10,000 children in the years before 1988; after 1988, it was 20.8 cases. In Denmark, 1988 marked an increase from 0.6 to 6.6 cases of ICD-10 Autistic Disorder per 10,000 children; worldwide, the change was from 6.0 to 24.2 autistic children per 10,000 live births.

I did not forget to mention Japan; the Japanese data starts in 1988.

No changepoint data could be calculated for the Kohoku Ward, Japan, data set (Table 1), as AD cumulative incidence increased continuously over the entire period of study (1988-1996)(Figure 1a).

As Mark Chu-Carroll of Good Math, Bad Math remarks about another crucial data discrepancy*** hinging on that unlucky year:

[T]he earliest data in their analysis comes from a different source than the latest data. They've got some data from the US Department of Education (1970->1987) and some data from the California Department of Developmental Services (1973->1997). And those two are measuring different things; the US DOE statistic is based on a count of the number of 19 year olds who have a diagnosis of autism (so it was data collected in 1989 through 2006); the California DDS statistic is based on the autism diagnosis rate for children living in California.

So - guess where one of their slope changes occurs? Go on, guess.


The slope changed in the year when they switched from mixed data to California DDS data exclusively. Gosh, you don't think that might be a confounding factor, do you?

While the absence of any Japanese data from before 1988 wouldn't affect the change-point calculations for California or Denmark, it does make me a bit more skeptical of the worldwide changepoint, which was around 1989. It does help a bit to know that there are other bits and pieces of data from around the world helping to fill in the patchwork --- while it still might be a bit lopsided, depending on how the various studies are distributed in time, it's at least not as much of a foregone conclusion that the slope will change in 1988.

Besides the statistical uncertainties arising from such an uneven, patched-together data set, there are also some confounding factors arising from the fact that all this data came from administrative databases maintained by government human-services agencies. This introduces changes in policy as other potential influences on how many people show up labeled "autistic" (see this old post by Michelle Dawson for more on how this works).

The authors of the EPA study, Michael E. McDonald and John F. Paul, understand this and are accordingly cautious about whether their observed increase in autism incidence is "real" or not:

The three studies that were selected for inclusion in our analysis had sufficient record length for time trend analysis because they collected administrative data for programmatic services to autistic children. Each of these studies, which showed cumulative incidence of autism increasing (Figure 1a), had the advantage of using the data collections from a single administrative database that covered a well-defined geographic region. This was not true of our worldwide data set, where differences in method of data collection, record length, and geographic area may all have contributed substantially to an increase in AD cumulative incidence (Figure 1b).

Administrative databases also have the advantage of a relatively consistent methodology over periods of time. However, all three of our selected databases have some methodological changes associated with their long-term data collections. A changing of the diagnostic criteria and the broadening of the definition of autism to PDD occurred during the data collection within the Danish and California databases, but a single diagnostic criterion was applied consistently within the Kohoku Ward study. As we were aware of the issues with broadening and changing diagnostic criteria, in our study selection criteria we chose explicitly to focus on AD, which has had relatively consistent diagnostic criteria since about 1978. However, this does not necessarily mean that the diagnostic criteria have been consistently applied in practice over this time frame. It does appear that AD criteria have been applied fairly consistently since about 1994 in the Danish database and across the United States with the use of ICD-10 and DSM-IV, respectively. A recent analysis of the California database from the early 1990s through about 2006 suggests that changing diagnostic criteria may account for a 2.2-fold higher cumulative incidence of autism, relative to the 7-fold increase observed over 11 birth cohorts. It is unknown how consistently previous AD criteria were applied or how the application of the current criteria compare with past criteria.

Administrative data may also be prone to diagnostic substitution, where children with multiple diagnoses may be identified differently over time depending on which diagnosis allows the individual to receive administrative services. In British Columbia, Canada, changes in the assignment of special education codes may account for at least one-third of the increase in autism prevalence from 1996 to 2004. However, in the California data set, diagnostic substitution from the category of mental retardation to autism could not account for increased autism from 1987 to 1994.


Studies with AD assessment in children occurring before age 10 may show an apparent increase in autism because of earlier ages of diagnosis in recent years, relative to historic underidentification at the same assessment age. In fact, Parner and coinvestigators examined recent cohorts (1996 and 1997; 1998 and 1999) in the Danish database and found that at least some of the AD increase was attributable to earlier diagnosis. In the California database, a shift toward a younger age at diagnosis also was found and contributed to about 12% of the observed increase in autism from 1990 to 1996, based on assessment at age 10. Thus, earlier diagnosis contributed to increase in AD cumulative incidence in at least two of our selected studies and, likely, to studies in our worldwide data set (Table S1, Supporting Information).

In addition to finding that changes in diagnostic criteria and earlier age at diagnosis do contribute to some of the observed increase in cumulative AD incidence in the California database for 1990-2006, Hertz-Picciotto and Delwiche also found that the inclusion of milder cases of autism contributed to the increase. This contribution was not as much as that resulting from changing diagnostic criteria but was more than that contributed by earlier age at diagnosis. Differential migration of autistic children into the state was also found to play a minor role in the increase. The investigators suggest that wider awareness of autism, greater motivation to seek services, and increased funding for services also may contribute to increasing cumulative AD incidence, but these factors could not be documented or quantified.

I've already spent a ridiculously long time**** writing this post, so I'm not going to try to unearth every single policy change that might affect autistic children's enrollment in state disability programs. I can tell you, though, that each of the change points SCPI identifies corresponds with historical events much likelier to account for changes in how many people receive a given DSM diagnosis than the addition of a few new vaccines to the recommended vaccine regimen: in 1980, 1987 and 1994 the DSM underwent major revisions. While I'm not sure about the DSM-III, I know for sure that the DSM-IV greatly relaxed the diagnostic requirements for Autistic Disorder from what they were in the DSM-III-R, and added the category of Asperger's syndrome. (The 1995 changepoint, identified by SCPI and taken from a study not used by the EPA analysts, reflects all the different autism-spectrum diagnoses, not just Autistic Disorder). Changing diagnostic criteria, as well as a sea change in people's ideas about what sort of person might be called "autistic," seem to me much more likely to be behind the increasing rate of autism diagnosis than exposure to a few femtograms of human fetal DNA fragments via vaccines.

*(It is hard to find sources on the Internet that can verify that claim --- while most laboratories that use those cell lines, or sell them for other researchers to use, will classify the cells as human fetal cells, and describe their cell type, growth characteristics and other things it would be useful to know if you were going to try to culture those cells, they don't go into huge detail about the circumstances of those cell lines' establishment. Why would they? But I was able to find original articles describing the cell lines --- MRC-5 was established in 1970 by British researchers J. P. Jacobs, C. M. Jones and J. P. Baille, and described in this 1970 letter to Nature; WI-38 was established sometime in the 1960s at the Wistar Institute in Philadelphia, Pennsylvania, by cell biologists Leonard Hayflick** and Paul S. Moorhead, according to a method described in this 1961 article (full text here) in Experimental Cell Research. That paper only describes the creation of cell lines WI-1 through WI-25, though; WI-38 came later. Papers using WI-38 cells usually cite either Hayflick and Moorhead (1961), or this later article by Hayflick (1965), also published in Experimental Cell Research. Hayflick and Moorhead (1961) do not go into detail about the source of their human tissue cells; they only mention that the source of the lung tissue used to establish some of the cell lines, which would include WI-38, is a three-month-old fetus. So, weird as it might sound, it's actually true that some vaccines are produced using cells derived from aborted fetuses.)

**AnneC, if you're reading, you might have heard of this guy! He discovered the "Hayflick limit," or the maximum number of times a given cell can divide before it deteriorates past functioning. He's done lots of research on the biology of aging and life extension, the latter of which I know is one of your perseverations.

***He seems to be using the SCPI newsletter as his reference, and not trying to tease out which errors are theirs and which were already in the EPA's somewhat more conservative analysis. The problems with the Department of Education data he mentions would apply only to the SCPI's findings, since the EPA researchers did not use any of that data. The problems he has with "hockey-stick analysis" in general, though, would seem to apply to both parties. SCPI just compounds the EPA's error by doing multiple such analyses on their already-too-small data set.

****A little over two weeks.

McDonald, M., & Paul, J. (2010). Timing of Increased Autistic Disorder Cumulative Incidence Environmental Science & Technology, 44 (6), 2112-2118 DOI: 10.1021/es902057k

Saturday, April 24, 2010

New Blog Feature: Executive Summaries

Stephanie Lynn Keil left a comment on this post at FWD/Forward that I think raises a very good point: long, densely-written blog posts are inaccessible to people with some kinds of cognitive disabilities.

As I was reading her comment and nodding along, it occurred to me that I might be one of the writers whose style prevents Stephanie (and probably others) from reading many of my posts! My posts can get very long, and I tend to write long, confusing sentences.

Also, my posts sometimes change their focus as I'm writing them; it can take me hours, days, or even weeks to write one post, so by the time I reach the end of writing one of my longer posts, I can hardly remember what I was talking about when I started writing the thing. I imagine the reader probably feels a similar confusion!

So, I've decided I will start doing short (shooting for 1-3 paragraphs) Executive Summaries of my longer, more information- or theory-dense posts.

Some of these will show up as separate posts (for any series of posts, I think it makes the most sense for the Executive Summary to cover all posts in the series, and be included in the series as a separate post), but most will be tacked on to the beginning of posts like an abstract.

If you're using a feed to read my blog, this might mean that you get spammed with wave after wave of old posts to which I'm adding Executive Summaries, so if you want to avoid having your reader jammed with everything I've ever written, you might consider taking me off whatever feed you're using.

Friday, April 23, 2010

Things You Don't See Every Day: Discussion of Sexism in Superhero Comics

I was really pleasantly surprised when I was given Classic X-Men #34 as a gift recently; besides the conclusion to an exciting story arc (which I had anticipated), the issue also included this little gem of a backup story written by Ann Nocenti and drawn by John Bolton.
Ann Nocenti frequently wrote the backup stories for the Classic X-Men series --- that series consists of reprints from an earlier run of Uncanny X-Men paired with new stories that are usually vignettes focusing on aspects of one particular character's personality. This story, which ran in June of 1989, features villains Emma Frost (the White Queen of the Hellfire Club) and Jason Wyngarde (Mastermind, also Black King of the Hellfire Club), and, caught between them, a hapless cocktail waitress who works at the Hellfire Club.

It begins with the waitress trying to serve drinks to Jason Wyngarde, who leers at her in a particularly unsettling manner:
(If you can't read the text, the topmost inset panel shows a scary-looking guy in Victorian garb staring at the body of a young woman wearing black lingerie and thigh-high boots, thinking: "How vulnerable and exposed she is. And the way she allows me to just openly stare at her! It's so base it embarrasses me!" The girl speaks to him, saying, "Will there be anything else, Mr. Wyngarde?" When he doesn't answer, she keeps trying: "Sir? Sir?" but still can't wrest any acknowledgement from him.)

Shaken, the waitress retreats to the women's dressing room, where she bumps into Emma Frost, who is changing into her uniform. The waitress starts to talk to Emma about Wyngarde, hoping to find an empathetic listener in another woman:
(Dialogue balloons say: "Oh, Miss Frost! Don't you just hate wearing these outfits?")
(Dialogue: "Isn't it all so sexist? I mean, shouldn't we protest, on principle? It's our skills, as servants, that should count, not how we look. I mean, am I right?")
(Waitress: "Shouldn't we stick together, as women, and refuse to dress like this?" Emma Frost: "What are you babbling about?")

This other woman being Emma Frost, however, no such consolation is forthcoming.
("Who do you take me for? Just another servant girl?") ("I am the White Queen! Yes, you wear that outfit, and men look at you, and it cheapens you.")
("But when I wear it, it cheapens them. Let me explain a few things about sexism, girl. It's all in what you use it for!") --- I like the appalled look on the waitress's face when she hears this. It's clear that what Emma is saying is blowing her mind, but the nuances of her reaction are left unclear. I prefer to imagine her thinking something like, "You are soooo deep in denial it's making me dizzy."
("... But it's really about personal domination. My clothes are my battle armor! I dress to go to war! My looks and body are weapons on par with a man's fists.")
("There is no such thing as sexism, unless you give them that power!")

To illustrate her highly personalized philosophy of female empowerment, Emma Frost sallies forth to confront the man whose churlish behavior inspired the whole discussion. She sits down opposite him, placing herself in the position of an equal, a competitor, rather than a servant, and plays a brutal, high-stakes game of psychic chess with him.
Neither character emerges from the battle unscathed: Emma manages to impale Wyngarde on his own spear, but in doing so she sustains enough damage to shatter her psionic self. Yet she doesn't, won't, and can't leave the table --- the combat means too much to her, even if it may ultimately kill her.
The point I see Nocenti making here is this: trying to fight sexism by making it work for you --- in Emma's case, embodying perfectly the patriarchal conception of the femme fatale --- is a sucker's game. No woman can do it well enough, and even if she could, the game is still ultimately rigged against her.

Wednesday, April 21, 2010

A Good Kind of Autism Awareness

EXECUTIVE SUMMARY: A business columnist for my local newspaper has written a column urging employers to think about hiring autistic workers. She starts out by describing the good things about autistic workers: we're diligent, honest, thorough and don't mind doing repetitive tasks. Then she goes on to mention how badly autistic people need jobs: many of us can work, but have trouble convincing prospective employers to hire us, and, at the same time, many of us are ineligible for disability benefits or services. I appreciated seeing an autism-awareness article in the mainstream media that focused on autistic adults, and quality-of-life issues, rather than the usual hype about the epidemic of autism among schoolchildren.

In honor of Autism Awareness Month, Kansas City Star workplace columnist Diane Stafford has written what I think is actually a really helpful article!

Since the main focus of her column is jobs and job hunting, she's decided to raise awareness of a) the great difficulty autistic people face in getting hired, even when they can work, and b) the benefits to prospective employers of hiring autistic workers.
Pool of Talent Shouldn't Be Overlooked
The Kansas City Star

Do you need a worker who pays attention to detail? Who will do tedious data entry? Who won't waste time gossiping?

You might find that you need someone with autism or Asperger's syndrome.

This is National Autism Month. Advocates have geared up to share sobering statistics about the increasing numbers of children with the diagnosis, 1 in 110.

Adults with autism or its milder form, Asperger's, have a hard time finding jobs these days. What will the jobless rate be for that group when the children who have autism try to become employed?

"As it is now, lots of people with autism or Asperger's are looking for full-time jobs, but their gifts are not recognized," says Sean Swindler, director of community program development at the Kansas Center for Autism Research and Training.

"Our challenge is finding jobs that fit them."

Swindler tells of a successful job placement: A man with autism works in a bank, running cash from the tellers' windows to the vaults.

"He deals in very black-and-white thinking," Swindler explains. "He's absolutely honest. He has very strong attention to detail. When he's handed the money it will go into the vault. Always."

Others are great at computer work.

But when advocates for hiring such individuals visit with employers, they often run into stumbling blocks.

Groups such as Swindler's try to educate.

"People with these disabilities who are leaving school now are not expecting to be in sheltered workshop environments," Swindler says. "They're expecting to be a full member in the community, the way their education has prepared them to be."

But vocational rehabilitation money, which funds job coaches who train and place people with disabilities in the workplace, is in desperately short supply, a victim of pared-down state budgets.

"We have people on the waiting list for seven years," Swindler says of those wanting job support services. "They sit in their parents' houses for years, losing all the skills they were taught in school."

Furthermore, he notes, about half the people with Asperger's or autism don't qualify for state-funded disability services, "so they're completely on their own in the job market."

In a tight job market, it's hard to advocate for special cases, but it's something that must be done, or lots of tax dollars are wasted and talents lost.
The article is not perfect --- it does perpetuate the myth that there are a lot more autistic children being born and entering school now than there have ever been before (when really they are just getting diagnosed earlier and at higher rates), and hints that some sort of crisis may be brewing when these aforementioned hordes of autistic children grow up and begin to apply for jobs --- but it does a great job of calling attention to a real problem that lots of autistic adults have (though it should be pointed out that the actual unemployment rate among autistic people is, while still higher than the unemployment rate for the general population, probably not as high as most studies estimate it, since those studies tend to select participants who were diagnosed with autism at younger ages --- sometimes in childhood --- and also tend to recruit through disability programs, both of which things are less likely to be true for people whose ASDs do not greatly impair their ability to find jobs) and that much mainstream Autism Awareness campaigns ignore, in favor of pushing for earlier, more intensive behavioral treatment.

Thursday, April 8, 2010

Totally Unexpected Gender and Disability Awesomeness from Larry Niven

EXECUTIVE SUMMARY: This is a review of hard-science-fiction writer Larry Niven's 1983 novel The Integral Trees. The book is excellent in the ways I've come to expect excellence from Niven --- imaginative world-building, exciting plot, clever application of physics and engineering principles --- but it also surprised me by being a lot better than his books usually are at characterization, particularly its representations of women. It also astonished me by having about half of its main characters --- including one who I consider the novel's most heroic character --- be people with disabilities. In fleshing out these characters, Niven manages to avoid "supercrip" and "bitter, angry cripple" stereotypes, and also to show the role that environment plays in disabling or empowering people with disabilities.

Like a lot of science-fiction writers of his generation, Larry Niven is sexist. While this does annoy me when it shows up in his work, I also find enough to like in his writing to keep reading him.

(With Niven, the thing that makes me consider myself a fan is the hugely imaginative worldbuilding, backed up with just enough real-world physics to make you suspect that whatever fantastical setup you're reading about might actually be possible).

The Niven book I've read most recently, The Integral Trees (first written in 1983), met my expectations in the originality and skilled, thoughtful realization of its central concept --- a "world" lacking a planet, composed instead of a huge gas torus surrounding a neutron star, which itself orbits another star --- and greatly exceeded them in its rendering of female and disabled characters.

First of all, The Integral Trees surprised me just by having lots of major characters with disabilities, as this is not a thing that happens very much at all in science fiction*.

The plot revolves around a small party of nine people, sent on a reconnaissance mission up the trunk of the enormous floating tree that houses their village to look for potential sites to build a new village, as food is becoming scarce at the old location. (They depend on what blows by them on air currents, along with what little they find growing on the tree itself, for food. While a little gardening is possible on the tree, there's not enough of anything resembling soil in this airy world to support self-sufficient farming communities). Because the village's Chairman is pessimistic about their chances of survival, the scouting party is sent out less as a serious attempt to re-establish the village than as a pretext for getting rid of everyone the Chairman considers a useless eater.

Accordingly, the scouting party is composed of a pretty unlikely bunch of heroes: aside from the leader, who is a skilled hunter who's been exiled for mostly political/interpersonal reasons, most of the intrepid explorers are people with disabilities.

In this passage, the main character, Gavving, surveys his comrades-to-be:
The Grad had long been Gavving's friend, but he wasn't much of a hunter. And Merril? Merril would have been a big woman if her tiny, twisted legs had matched her torso. Her long fingers were callused, her arms were long and strong; and why not? She used them for everything, even walking. She clung to the wicker wall of the Commons, impassive, waiting.

One-legged Jiovan stood beside her, with a hand in the branchlets to hold him balanced. Gavving could remember Jiovan as an agile, reckless hunter. Then something had attacked him, something he would never describe. Jiovan had returned, barely alive, with ribs broken and his left leg torn away, the stump tourniquetted with his line. Four years later the old wounds still hurt him constantly, and he never let anyone forget it.

Glory was a big-boned, homely woman, middle-aged, with no children. Her clumsiness had given her an unwanted fame. She blamed Harp the teller for that, and not without justice. There was the tale of the turkey cage; and he told another regarding the pink scar that ran down her right leg, gained when she was still involved in cooking duties.

The hate in Alfin's eyes recalled the time she'd clouted him across the ear with a branchwood beam; but it spoke more of Alfin's tendency to hold grudges. Gardener, garbage man, funeral director ... he was no hunter, let alone an explorer, but he was here. No wonder he'd looked bereaved.

Glory waited cross-legged, eyes downcast. Alfin watched her with smoldering hate. Merril seemed impassive, relaxed, but Jiovan was muttering steadily under his breath.

These, his companions?
Jiovan has one leg; Merril has none and walks on her hands. Glory is so clumsy she's exempted from most everyday physical tasks that villagers normally share. Alfin, the middle-aged and misanthropic village gardener, has a terrible fear of heights that makes it extremely hard for him to climb. The other four characters --- Clave, Gavving, Jayan and Jinny --- are able-bodied.

I thought the characters of Alfin and Merril, and how they changed --- became more or less able as their environments changed --- worked surprisingly well as illustrations of the social model of disability.
For instance, as the scouting party gets further and further away from their village, which is at one of the ends ("tufts") of the free-floating giant tree they live on, they also move toward the center of the tree, where the "tides" (forces analogous to gravity --- see here for a more detailed explanation) get weaker, until movement becomes so effortless that Merril and Jiovan no longer have to work harder than everyone else to cover the same distances; it's as easy for them to flit around in near-free-fall conditions as it is for the characters with two working legs to do so.

Merril takes particular joy in this development:
... Gavving heard Merril shout, "Who needs legs?"

She was holding herself an arm's-length from the bark by a one-handed grip. He shouted down. "Merril? Are you all right?"

"I feel wonderful!" She let go and began to fall and reached out and caught herself. "The Grad was right! We can fly!"

Gavving crawled toward her. Jinny was already below her, pounding in a spike. When Gavving reached them, Jayan was using the spike for support, with her line ready in her other hand. They pulled Merril back against the tree.

She didn't resist. She crowed, "Gavving, why do we live in the tuft? There's food here, and water, and who needs legs? Let's stay. ... I've eaten enough foliage to last me the rest of my life! But if anyone else wants it, we'll send down someone with legs."
Eventually, the tree they've been living on splits apart, and they have to jump out into the empty sky; into free-fall. There, Merril thrives even more. The group faces all sorts of terrible dangers --- they're accosted by raiders from a hostile neighboring tribe right before the tree splits; their leader, Clave, is gravely injured; when they make their way into a huge free-floating "jungle" of diffuse, mosslike airborne vegetation, they're attacked and captured first by the jungle's giant-sized inhabitants and later by slave hunters in a spaceship --- and consistently Merril's bravery, determination and resourcefulness help get the group out of trouble.

The book is a bit less consistently successful in its portrayal of (non-disabled) female characters: yes, there are a lot more women in The Integral Trees than there are in most Niven books, and they do all sorts of cool things --- there's a female naval officer and scientist-in-training among the technologically advanced people who trawl the jungle for slaves; among the people living in the jungle, women fight alongside men as soldiers, and most of the people Merril, Clave, Gavving et al. end up helping to fight the slavers are female; and finally, much earlier in the book, the tribe living on the opposite tuft of the tree from Gavving's village employ all-female hunting parties (the hunting party that accosts the protagonists right before the tree breaks apart even includes a trans woman) --- but there's still a lot of sexual objectification of female characters. The worst offenders in this regard are Jayan and Jinny, the twenty-year-old, identical twin girlfriends of alpha-male scouting-party leader Clave. (That's why Clave was sentenced to lead this wild-goose-chase: he had been married to the daughter of the village chairman, but she was apparently such a nagging shrew that he couldn't stand to live with her, so he left her and took two younger, prettier, nicer more compliant girls to replace her).

*A notable exception to this rule would be the subgenre of science fiction set post-nuclear-apocalypse, usually written during the '50s and early '60s, at the height of the Cold War. With those, you usually see lots of characters with congenital disabilities or deformities, always attributed to fallout from the bombings. These characters are rarely treated as fully human, though --- their disabilities make them monstrous and Other in their authors' eyes.

Sunday, April 4, 2010

Crazy Agates!

(A bigger version of the picture I'm currently using as my userpic)

Here are some pictures of a necklace I made (and have listed on my Etsy) featuring beads made of cut and polished agate.
Those beads caught my eye because, while at first they just seem to have different shades of purple in them, if you look closer you can find swirls of brown, yellow and green too.
(When I bought them from my local bead store, the receipt actually said "crazy agates." I thought that was kind of funny --- do they also have Irascible Quartz*, or Melancholy Marcasite? I tried Googling the phrase, to see if that made anything clearer, and only found references to "crazy lace agate," which these might or might not be. The crazy-lace agates I could see on the internet tended to have, er, lacier patterns than these do).
... And here's a picture of me wearing the necklace with an outfit that actually complements it, as opposed to just being a dark background:
(The light in that one sucks for seeing the color of the stones).
*As soon as I had that thought, I decided I *wanted* some Irascible Quartz. It is very beautiful in my imagination: little clusters of crystalline spears, colored a deep, lurid red like some unholy cross between blood and lava, with black streaks and fine metallic filaments shooting around the inside. It might even glow.

Saturday, April 3, 2010

Modern Morality Tales

Poor Sandra Bullock.

First, her triumph over winning a Best Actress Oscar gets cut short in one of the cruelest ways possible --- she discovers that her husband is cheating on her, and also that he might be a neo-Nazi, or at least think neo-Nazism is funny or ironic rather than horrible --- and then, this being a backlash era and all, some supercilious op-ed columnist sees fit to use her personal tragedy as a cautionary tale to shame women for daring to have a life beyond their marriages.

There has also been the barrage of relentless, super-exploitative media coverage that never fails to compound the sense that one's life is spinning horribly out of control.

(Here are some sample magazine covers):

And then, the feminists get in on the act! Feminists! The ones who are supposed to have her back, or at least who might be expected not to blame a woman for her husband's failings? Well, they don't seem to be extending that courtesy to Sandra Bullock.

Here's Kate Harding, who is normally spot-on in her analyses and who, until now, has scrupulously avoided blaming victims, writing for Jezebel:
If there's been a bright side for Sandra Bullock during this bizarrely long spell of public interest in her dickwad husband, it's that her own reputation has mostly been spared. But can it survive the Nazi picture?

More to the point, should it?

Don't get me wrong: I am in no way suggesting that a wife is responsible for her husband's behavior. I'm not even saying Bullock must have known; just as it's possible for women not to realize their husbands are cheating or married to other people or, say, responsible for multiple murders, it's surely possible to miss the signs that your partner is, if not an active neo-Nazi, the kind of twisted asswipe who finds humor in taking photos that suggest that he is. But at some point, don't you have to wonder?


I'm all for giving celebrities their privacy amid salacious gossip and personal turmoil, but since Bullock clearly knows all about that photo and the other accusations now, I can't figure out why we haven't heard from her yet. This is not the kind of thing you let slide, even if all you want to do, quite understandably, is hide out and lick your wounds. Perhaps she's just taking her time crafting a blistering statement denouncing [Jesse] James' apparent anti-Semitism, avowing her unfortunate but total ignorance of it and announcing the imminent divorce. But if that's not out by tomorrow? Something's seriously fucked up here. Remaining silent at this point is such an inexplicable career move --- questions of human decency aside --- I can't quite believe we haven't seen such a statement already. And I really can't believe there aren't more people making noise about it yet.


I wonder if similar feelings [of liking/sympathizing with Sandra Bullock] are driving the trend toward demonizing James --- quite deservedly, it seems --- while letting Bullock off the hook for marrying what appears to be a world class asshole. I mean, world class. Jezzies, being the brilliant, skeptical and deliciously unmerciful bunch you are, have already been discussing the possibility that Bullock knew exactly who she married and somehow didn't think the Nazi thing was a dealbreaker. But so far, most folks are curiously silent on the topic. The dominant narrative over the last few weeks --- save for a bit of crapola about how powerful women drive their emasculated men to cheat --- has been that Bullock is a victim who will and should come through this unfortunate episode with her dignity, career and tremendous likeability intact. Because unlike James, she did nothing wrong.

And you know, I like that narrative almost as much as I like Sandra Bullock, in theory; I like that for once, most people seem more inclined to call a douche a douche than speculate about what (beyond stupidity and hubris) would cause a man to step out on his beautiful, talented wife. And because I really like the idea of doing tequila shots and singing along to classic rock with Sandy B. at a dive bar somewhere --- even though I will almost certainly never meet her, she couldn't really hang anonymously like that, and I can't stomach tequila --- I'd really prefer not to consider another obvious angle on Jesse James' overwhelming jackholery in the context of his marriage: the whole "birds of a feather" thing.

So I can certainly understand why people are reluctant to say, "Hey, is it just me, or have we reached the point where it's reasonable to wonder if Sandra Bullock kinda digs the Nazi scene herself?"

But, you know... is it just me, or have we reached that point?
Despite a whole lot of hedging, these passages keep coming back to two points that I think are sexist: 1) Sandra Bullock has a special responsibility to repudiate, denounce, or otherwise publicly air her opinions on neo-Nazism because her husband, who has already demonstrated a capacity and willingness to hide things from her, might be a neo-Nazi; and 2) Sandra Bullock either knew her husband had neo-Nazi proclivities, and tacitly approves, or she is guilty of unusual obtuseness for failing to suspect it.

Ginmar calls this a resurrection of the "angel of the hearth" stereotype, and I think she's right.

Because women are supposed to be the ones who "civilize" brutal men, whenever a man with a wife or girlfriend does something wrong, people also look to blame the woman. Even when she had absolutely nothing to do with whatever it was he did, and when she was probably just as much in the dark about it as everyone else. She's been neglecting her womanly duties by failing to improve her husband or boyfriend's moral character, so she must be a Bad Woman!

More evidence that becoming a feminist doesn't make all your internalized sexism and misogyny magically go "poof."