More on "The Geneticization of Autism"

In Saturday's post I quoted at length from Kristin Bumiller's 2009 article "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy", which explores the social and political implications of a largely genetic understanding of illness and disability. I think almost all the ideas she develops in that article have merit, especially her points about the limitations of a public-health system modeled on the larger consumer economy, and about coercive, eugenic aspects of genetic testing as it is used today in the U.S.

But there was one part of the article that really bothered me, and that's what I'm going to talk about in this post.

Here's the relevant passage:

The most divisive expression of dissent to geneticization is found among groups that seek to document environmental causes of autism, such as the use of mercury in vaccines. These outsiders, dubbed the "Mercury Moms," are engaged in insurgent activism against the medical establishment and most directly the Centers for Disease Control and Prevention (CDC). They claim that the CDC has perpetuated a cover-up of medical evidence confirming the link between thimerosal (a mercury preservative previously used in many childhood vaccines) and the increase in autism. In stark contrast to professionals, parents and activists who subscribe to a genetic understanding of autism, the Mercury Moms are frequently characterized as hysterical and antiscience (Kennedy 2007; Desmon 2008). As Ken Plummer (2001) has suggested in his account of what he calls "intimate citizenship," this kind of very public debate over controversial issues demonstrates that there is something much grander at stake than the validity of scientific research. For the Mercury Moms, their activities fulfill their role as protectors and provide assurance that they have pursued all avenues to help their children. As activists, the Mercury Moms are often marginalized by the media, national autism advocacy groups, and the professional establishment, not only because they dispute official information but also because they amplify the fears of all parents about the possibility of seemingly benign choices, such as complying with childhood vaccination recommendations. Their advocacy is even seen as dangerous because it could lead to widespread rejection of vaccinations that prevent the resurgence of deadly diseases. In part, the marginalization of the Mercury Moms results from their own tendency toward absolutism, but at the same time there is little mainstream recognition of scientific evidence that supports the possibility of links between exposures to toxins and autism (DeSoto and Hitlan 2007).

I know she's writing an academic paper, and a social-science one at that, so she has to be neutral and objective in her language in a way that a blogger doesn't, and that the truth or falsehood of any given hypothesis about autism's root causes is beyond the scope of her article, but it still reads to me like she's giving the much-discredited thimerosal hypothesis equal weight with the prevailing notion that genetics probably play a role in autism.

(I also think she greatly overstates the extent to which most autism researchers think of autism as being 100% genetic*, or the extent to which genetic variations associated with autism are necessarily inherited.)

Most troubling to me is this phrasing, "... environmental causes of autism, such as the use of mercury in vaccines." Using what may be the most exhaustively debunked hypothesis ever to be proposed as an explanation for autism as an example of bias against research into possible environmental causes, triggers, or correlates of autism strikes me as misguided.

It equates two statements --- "Environmental factors may have something to do with autism, either on their own or in concert with genetic predispositions" and "Mercury in vaccines causes autism" --- treating them as equally viable avenues of inquiry, and implying (by treating the latter as merely an instance of the former, broader category) that refusal to entertain the vaccine hypothesis means that one's mind is closed to all environmental hypotheses of autism. That's just not true.

I don't totally hate her analysis of the "Mercury Moms" movement --- I think she's right that they illustrate the lopsided nature of the partnership between the medical establishment and popular health movements, and also that they represent the loudest dissenting voice to the autism-is-genetic conventional wisdom, and that they are often caricatured in sexist tropes, as hysterical, ignorant women. But I think that if she wants to make the point that the autism-research establishment is ignoring potentially fruitful research into environmental factors, she should not use this group to illustrate it; the alternative explanation of autism that they espouse has been investigated, over and over again, and come up empty. Not wanting to pursue a dead end isn't the same as ideological narrow-mindedness, and many of the researchers who dismiss the Mercury Moms with such contempt are also looking into other environmental factors for a possible link with autism.

I can see why this group appeals to her, since, along with loudly repudiating the genetic understanding of autism, and claiming that a ubiquitous, expert-approved medical practice is actually causing the spread of autism, they are laypeople and mothers rather than doctors or academic researchers. They hit all the right notes as far as opposing the "genetic citizenship" model is concerned; I just don't think you can put aside such things like the ever-increasing weight of evidence against their claims, their indifference to this evidence, and the public-health consequences of their anti-vaccination agenda, to say how much of a role the geneticization narrative also plays in pushing them to the margins. I'm certainly willing to believe it's a factor, but I think the biggest factors are the other ones I mentioned.

Bumiller admits as much in the last sentence of the paragraph I quoted: "In part, the marginalization of the Mercury Moms comes from their own tendency toward absolutism ..."

The other thing that annoyed me somewhat was the positioning of two factions that differ on the matter of what causes autism and what kinds of things are likely to be useful in treating, curing or preventing autism, but that agree in their understanding of autism as a disease that ought to be eradicated, as the two opposite poles of this debate on what autism is and what society ought to do about it. There's a third facet as well, one that I know Bumiller knows about, because she wrote an earlier article about it, and mentions it in passing in this one; it's the neurodiversity movement, which she glosses over as another proponent of the idea that autism is genetically determined.

Many of us do think autism has a genetic component, and some of us think it's entirely genetic and has been around for a very long time, but for the most part we don't give a lot of weight to the matter of what causes autism. It's not critical to our objective, which is acceptance and integration into mainstream society.

And there are premises of the "genetic-citizenship" model that we question, or outright reject, just as the Mercury Moms reject the idea that doctors always know best. Many of us reject the ethic of individual self-care that the genetic-citizenship model revolves around, and we certainly reject the idea that it is every citizen's duty to prevent disabled people from being born. We also have a very fractious relationship with the major autism-advocacy organizations, as a search on the term "Autism Speaks" on most autistic people's blogs will tell you.

It seems to me that this article would've been much the richer had it included more of this stuff, maybe comparing and contrasting the ways in which the Mercury Moms and the neurodiversity and disability-rights movements uphold or challenge (because both groups do some of both, I think) the doctrine of genetic citizenship.

Bumiller, K. (2009). The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy Signs: Journal of Women in Culture and Society, 34 (4), 875-899 DOI: 10.1086/597130


*Clearly there are plenty of researchers who think genetics is the major factor contributing to autism, and some who do think of autism solely in genetic terms, but the idea that environmental factors also play a role is hardly out of the mainstream. In fact, there are currently several large studies under way of possible environmental correlates of autism, in part because the environmental issue hasn't been as well-explored as the genetic one, and researchers know that and are looking to change it. That hardly seems to me like the idea of autism having environmental triggers is being suppressed by the scientific and medical communities ...

Making the Genes Fit: Genetic Explanations for Autism and Their Political Implications

EXECUTIVE SUMMARY: Political-science professor Kristin Bumiller has written another long article on the politics of autism; while her earlier article focused on the neurodiversity movement, this article is mostly about mainstream autism advocacy in the vein of Autism Speaks. In it, she argues that mainstream discourse about autism assumes that autism is a genetic condition, and that this assumption is insufficiently backed by evidence. She spends most of the article detailing the political implications of this assumption, which are 1) funnelling most activism on the part of families of autistic people into relatively narrow channels of corporate-philanthropic fundraising for biomedical autism-research initiatives, rather than calling for broader social changes that might benefit autistic people; and 2) making disability an individual, rather than a social, issue.

She introduces several concepts over the course of developing those themes: "geneticization" --- a process by which the preferred explanation for sickness and disability is that some people are genetically susceptible to certain illnesses; "genetic citizenship" --- an ethic of individual responsibility for health, and for knowledge of one's genetic predispositions; and "life optimization" --- a strategy for making the most of one's (or one's child's) life chances given a certain set of genetic predispositions. She makes the case that the latter two of these things are logical responses to a genetic understanding of disease and disability in a "neoliberal welfare state" like the U.S., but also that they are inherently coercive and inegalitarian.
____________________________________________________

Looking through the online archive of the women's-studies journal Signs, I found another article on autism by the political scientist Kristin Bumiller. (I did a series of three posts a while back about her 2008 article "Quirky Citizens: Autism, Gender and Reimagining Disability," which I thought made a lot of really good points). The more recent article, published in the summer 2009 issue of Signs, is called "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy."

That odd word, "geneticization," gives you a clue as to the article's main premise: it implies treating autism as if it were genetic when it may or may not really be genetic.

Here is how Bumiller introduces the term and relates it to autism:

The term "geneticization" refers to the growth of genetics as a means to account for and explain health and disease and the process by which biological conditions constitute social definitions of normality and abnormality (Lippman 1991, 18). Abby Lippman coined this term in a feminist analysis of the growing influence of genetic determinism on public policies and private practices regarding pregnancy and health care and to emphasize the gender, race, and class implications of this trend. In particular, Lippman identified the need to study how genetic interventions affect health management in a variety of economic and social contexts. Feminist scholars have been wary of the coercive and normalizing power of medical professionals, yet they have also demonstrated the complex implications of biomedical advances. As Donna Haraway has persuasively argued, it makes little sense to be "simply oppositional" in response to this new technological future because we are deeply implicated in scientific progress (Haraway 1997, 3).

The shift in the autism field was first generated by the efforts of parents with autistic children, who were responding to regressive beliefs within the medical field. The scientific and popularized explanation for autism prior to the 1980s perpetuated a theory that pathological mothering was at the root of the disorder. Bruno Bettelheim (1979) is especially noted by critics for his view that childhood disturbances associated with autism did not arise spontaneously but resulted from extremely abnormal mother-child relations. Bettelheim's understanding of the condition is drawn from the seminal work of Leo Kanner (1943), who distinguished autism from schizophrenia as an innate or inborn disturbance of affective contact but also thought that the notable coldness and formality of the parents usually had some effect on the development of the condition. The hypothesis that autism can be attributed to a general lack of maternal warmth is called the "refrigerator mother" theory of autism, and it did not come under direct attack until Bernard Rimland criticized it in his 1964 book Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior. Both a parent of a child with autism and trained as a physician, Rimland undertook scientific work and activism that played a central role in recasting autism as a medical condition with distinct psychological symptoms that could potentially be remediated through diet and other therapies. In an era when parents of children with disabilities were beginning to organize and seek legitimacy, parents of autistic children embraced new biological explanations.

She goes on to describe a gradual narrowing of focus from "biological" explanations to specifically genetic ones, starting when researchers conducting twin studies found a strong pattern of heritability in autism. Later research identified a "broad autism phenotype" in parents and siblings of autistic children*, which added to the impression that it runs in families. But research into specific genes has failed to find much --- many candidate genes have been found, but each one only accounts for a tiny fraction of cases of autism. However, this review on the genetics of autism, published this month in Genetics in Medicine, estimates the total proportion of autistic people who have one of the genetic variations discovered so far at about 25%, which is actually a decent-sized chunk. Couple that with the relative newness of microarray-based comparative genomic hybridization --- the technique responsible for turning up a lot of these candidate genes --- and you see that it might be a bit premature to declare genetic research moribund**.

Kristin Bumiller thinks the continued assumption that autism must be a genetic condition has persisted beyond what the available evidence argues for, and that the idea that it may have environmental triggers is dismissed too readily. (I think the issue of whether the case for a genetic basis for autism is overstated or not is a bit more complicated; see above paragraph).

I do not argue with her assessment of the different political implications of genetic vs. environmental causes of developmental disability; if the former idea (i.e., that it's genetic) is widely believed, then each citizen is responsible for knowing hir own genetic status and making whatever reproductive choices follow from that status, while, if autism and other developmental disabilities are thought to be triggered by some environmental contaminant, then the responsibility falls to the government to enact stricter controls on neurotoxic pollutants. (Both of these scenarios presume a social context whose primary emphasis is on preventing, rather than accommodating, disability. In a less ableist society, deciding whether or not to have children if you're a carrier of [whatever] genes would be much less fraught with emotion and social pressures, although I think we'd want to limit pollution even if we weren't constantly told that developmental disability is a tragic waste of life).

Bumiller calls the individual-responsibility scenario "genetic citizenship": you become a member of a community of people affected by a given genetic disease, and that community advocates for research funding and participates in studies to help speed the development of cures or therapies:

The concept of genetic citizenship has been introduced to describe individuals in the age of biomedicalization who engage in a new style of activism related to their inheritable identities and differential embodiment (Heath, Rapp, and Taussig 2004). This concept is most frequently applied to situations in which individuals and family members affected by a genetic disease come together and take an active role in fundraising, advocating, and influencing scientists in the hope of finding a cure. In the past decade numerous disease-specific advocacy organizations have exercised significant influence over research priorities, affected capital allocation, sponsored gene banks, and demanded collaboration in the pursuit of real progress for people living with genetic diseases (Terry et al. 2007). This participation also takes advantage of new networking opportunities created by the Internet and the emergence of virtual communities. These citizens are seen as having cast off the role of passive patients to become active consumers of health services. As collectivities they have strived to maximize their influence on the development of new science, technology, and medical knowledge (Rose 2007, 23).

Autism advocacy provides an important vantage point from which to evaluate the presumed desirability of genetic citizenship because its activism is complicated by intense controversies about the significance of the genetic link and about the social identities of autistics. With the expansion of biomedical research in the field, much autism advocacy has shifted from promoting the well-being of affected families and children to searching for a cure. These new organizations, now consolidated under the banner of Autism Speaks, primarily promote biomedical research and are modeled on other fundraising campaigns that draw attention to the plight of people who suffer from rare diseases. ...
...
Prior studies of genetic citizenship have raised concerns about how the victories of new genetic movements may reflect a questionable convergence of individual interests and market forces and have noted how research priorities are driven by profit motives (Duster 2003a). Similar issues arise in the context of autism; much of this research is conducted in collaboration with high-profile genetic laboratories and large biotech corporations such as deCODE Genetics. This research is given priority despite uncertainty about whether and how genetic information will eventually be useful for pre- or postnatal genetic screening, diagnosis, or treatment methodologies. Both the irresolution about the potential benefits of genetic research and the oversimplifaction of its significance in the media diminish the power of consumers and the general public to either shift priorities or call for more transparency on the part of medical professionals. Moreover, the current focus on instrumental (and uncertain) goals rather than more broadly framed issues of social justice and welfare limits the role of disease-specific advocacy organizations in setting priorities (Stockdale 1999). Specifically in the case of autism awareness, it has been shown that since public discourse has focused on the medical paradigm --- particularly on efforts to find a cure --- there has been less focus on the rights and social welfare dimensions of the issue.

So there are good and bad things about this trend toward people organizing and cooperating with pharmaceutical and biotechnology companies to raise money and set research priorities. People are able to find other people --- whole communities of people --- who share their circumstances, and can thus pool their knowledge, resources and coping skills in ways they couldn't before, when each person essentially had to work everything out for hirself. That's a good thing; it's also a good thing that people affected by various conditions have a way to tell the scientific and medical communities what they need most.

What's not so good is the fact that the "partnership" between grassroots advocacy groups and corporations is so lopsided; this restricts disease-based activism to the corporate-philanthropic model of fundraising for biomedical research, when it might include that and campaigns for social changes geared toward creating a healthier society.

The other things Bumiller thinks are bad about the "genetic citizenship" model are its tendencies to coerce people into making certain health and reproductive choices, to exacerbate social and economic inequalities, and to put a heavy burden of responsibility on women as guardians of their families' health:

[D]isability activists have illuminated the implications of wide-scale genetic screening for the devaluing of disabled lives, particularly as the lines between state policy and individual choice are becoming increasingly blurred. Despite the well-established obligation of physicians and genetic counselors to provide nondirective advice, studies have found that patients were given information that imposes professionals' views about the usefulness of genetic knowledge and the parental responsibility to promote fetal health (Rapp 1999). This research has shown that professionals effectively delivered the message that the only rational choice is to give birth to a "normal" child. Genetic testing is now understood as a necessary component of preventative public health programs, largely as a result of the trend toward universalized testing and mandatory screening of newborns (van den Daele 2006). This shift has transformed prenatal testing from an option individual women are given to lower their risk of having a child with a genetic defect to a system of reducing overall health problems in the population (Ward 2002). ...
...
The research on prenatal counseling has also shown that professionals often frame genetic testing as necessary for socially responsible parenting. One study found that counselors presented prenatal testing as something women need in order to become good parents (Lippman 1991). In this sense, good parenting is about having the knowledge and resources provided by this testing and then following through in a socially responsible fashion. As genetic testing is fully incorporated as a standard of care for pregnant women, the act of refusal is no longer about the assumption of individual risk. Now, the noncompliant woman has failed to take advantage of an important opportunity to maximize the life chances of her child. Such actions are likely to be seen as contrary to good citizenship in an age of biopolitics, where the technologies of biomedicine have created a context in which "biology is not destiny, but opportunity" (Rose 2007, 51) and the desired course of action is to follow a strategy of life "optimization" (6). This strategy, according to Nikolas Rose, is "not eugenics but is shaped by forms of self-government imposed by the obligation of choice, the desire for self-fulfillment, and the wish of parents for the best lives for their children." He goes on to say that "its logics and its costs deserve analysis on their own terms" (69).

To see this as part of a new regime of choice is to fail to recognize the unintended consequences of life optimization in regard to the regulation of normalcy. A recent ethnographic study on the influence of new genetic knowledge on Belgian insurance companies aptly illustrates this dynamic at work. Ine Van Hoyweghen, Klasien Horstman, and Rita Schepers (2006) investigated how insurers take account of predictive medicine in the process of determining premiums. They describe the companies' decision making as a process of "making the normal deviant" because when insurers make judgments "the margin of being normal is actually quite small and the scope for deviation is quite wide" (Van Hoyweghen, Horstman, and Schepers 2006, 1229). They find that when insurers rate people with genetic predispositions they put extra emphasis on how they have managed their health. ... [I]nsurers impose a greater responsibility for optimally managing one's health on people with known risk factors. The authors' conclusions have serious implications for the social costs of life optimization: "Instead of a 'genetic determinism,' it seems more plausible that we are all subject to different levels of susceptibility. ... As a consequence, ... the individual's lifestyle habits, preventive initiatives and compliant behavior in relation to these susceptibilities could be stressed more" (Van Hoyweghen, Horstman, and Schepers 2006, 1233). The actuarial process imposes a norm that defines suitable lifestyles for people with risky genes. This creates an incentive system for genetic "deviants" to conform to normal expectations of proper lifestyles in order to satisfy social expectations.
...
The concurrent forces of life optimization under conditions of biomedicalization and demands for personal responsibility in a neoliberal welfare regime make the determination of a disabled person's worthiness central to the process of gaining public health resources. The rights afforded to people with disabilities are more available to those who are good genetic citizens and can demonstrate their strict compliance with social norms. For example, special education provisions rely on eligibility and service determinations that are individualized and ad hoc rather than derived straightforwardly from medical diagnosis. As a consequence, parents with poor genetic literacy often have trouble convincing schools that their children's behavior is the result of a biological condition rather than their bad choices as parents. In social security disability determinations, each case is processed according to subjective criteria used to measure a person's ability to work. Studies show that success in claiming disability depends on a person's ability and willingness to persevere through the application process (Bilder and Mechanic 2003). Since most claims are routinely denied and these denials lead to a lengthy appeals process, only those who are unusually skilled at conveying medical knowledge, or at enlisting the assistance of medical professionals, are likely to have their applications eventually approved.

These systematic processes have the effect of distinguishing between disabled people who are at low risk and those who are at high risk for becoming dependent on the state. Social policies that rely on dividing people up according to risk groups also cut against the organic sense of solidarity that develops among people with disabilities (or among their advocates and caretakers). These systems of classification rely on distinctions that are often contrary to a dynamic and inclusive sense of citizenship among people with disabilities. The overall effect of a person's genetic status interacting with other forms of inequality is to create conditions of "cumulative social and economic disadvantage" and consequently to reduce opportunities to participate in civic life (Kelly 2002, 181).

I don't think Bumiller is endorsing any kind of conspiracy theory, or that she believes some secret cabal of biotechnology executives ever held a meeting and drew up a plan to seize control of the emerging wave of health activism. Similarly, I don't think she thinks doctors and genetic counselors are trying to "regulat[e] normalcy"; both of those things just happened, as new technologies and social movements were assimilated into a corporate-dominated, individualistic society. No human masterminds or conspiracies --- indeed, any planning or intention at all --- need ever be involved.

These are all the things I agreed with in Bumiller's article; there's also some stuff I have problems with (besides my differing assessment of the state of research into the genetics of autism), which I will write about in a later post.

Bumiller, K. (2009). The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy Signs: Journal of Women in Culture and Society, 34 (4), 875-899 DOI: 10.1086/597130


*Not everyone who studied relatives of autistic children found this broad autism phenotype --- this 1994 study of 44 families with multiple autistic children found that the non-autistic siblings did not display any noticeable autistic-like traits; "in the vast majority of cases, children [were] either clearly affected or clearly unaffected". But from what I can see, most of the studies published on this topic did find evidence of a broad autism phenotype, although positive results may be overrepresented among published papers just because positive results are more often published than negative results.

**You could still criticize it on other grounds, from the potential for eugenic applications of genetic research to the questionable wisdom of using limited research funds to pursue such theoretical questions ("Where does autism come from?") rather than finding out what works to improve autistic people's lives and enable them to participate in society to a greater extent.

On Neurotypical Privilege

Bev at Asperger Square 8* is drafting, with the help of her commenters, a list of privileges that come with being NT, along the lines of Peggy McIntosh's "White Privilege: Unpacking the Invisible Knapsack" and various online checklists dealing with male privilege, straight privilege, (temporarily) able-bodied privilege, cisgender privilege, thin privilege, Christian privilege, class privilege, etc.

Here are a few that I really like:

I can assume that police officers will not become alarmed at my natural body language, and find it necessary to subdue me in advance of any wrongdoing. (Bev)

I can reveal to my boss and coworkers that I am NT, without fear of losing my job. (Bev)

I can assume that most restaurants, theaters, stores and other places I would like to go will not be so loud or brightly lit or crowded that I will become unable to function at a basic level. (Bev)

I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do, because I lack certain cognitive skills. (Sanabituranima)

If my parents or spouse abuse me, I will not be told that my neurology drove them to do it. (Sanabituranima)

If I am murdered, my murderer will not be let off because killing someone of my neurology is an act of mercy. (Sanabituranima)

The services that I need to survive not only already exist, but even if I use those services on a 24-hour basis, I will always be considered independent. (Amanda)

If I am having a bad day or even a bad and stressful period where I am under a lot of strain, people will not say I am 'regressing' and panic, fret or automatically tell me I need medication or intensive treatment. (Norah)

My deficits are not considered deficits at all. Instead, they are considered universal faults in human cognition (even if they are not universal). And a good deal of effort is undertaken by my entire society to compensate for those deficits. (Amanda)

If it happens that I am better at something, more empathic, more sensitive, more honest or authentic, it is not considered a defect. (Anemone)

I will never have people tell me that I am a mindless waste of space and then deliberately fail to make any attempt to save my life in an emergency. (Amanda)

I have never had to use physical violence as my only means possible to communicate basic information. (Amanda)

My behaviors, abilities, and skill levels at age 2 or 3 are considered indicative of an immature phase of life that will pass naturally, not as representative of my prognosis for the rest of life. (Combative Autistic Wench)

The skills and talents at which people of my neurology tend to have an advantage, around which the system of the society in which I live is founded, are presumed to be objectively more important than those more commonly found in people of other neurological types. (Combative Autistic Wench)

If I fail, most will encourage me by telling me that I will ultimately succeed. (Wandering Jennie)

I can pursue a particular interest or hobby to my heart's content without being told that I am engaging in an unhealthy "fixation." (Sarah)

If I fail to understand autistic people, this is attributed to a deficit inherent in autistic people, rather than in me. (Amanda)

My neurology is not classified as a mental disorder. (Combative Autistic Wench)

No one sees my neurology as being in need of prevention, treatment, or cure. (Combative Autistic Wench)

If my sexual orientation, gender identity, lifestyle preferences or beliefs are deemed nonstandard, others will not suggest that I am pretending, incorrect, jumping the gun or unable to really know such things about myself because I am neurotypical. They will not use my neurotypical status as a basis for defending intolerant remarks or beliefs about any of these identities. (Pazi)

I've not had to deal with a lot of these things, fortunately; though I don't think I quite pass for "normal," I also don't read as "severely disabled," either. When I am overloaded, I don't explode in an emotional outburst; instead, I freeze and stay in one spot, silent and unmoving. I may not be capable of doing anything to get myself out of the situation, but I also do not attract any attention to myself that might get me carted off to someplace even more unpleasant. I also have the power of speech most of the time, and have been getting good at recognizing the signs of overload and asking for help, even from strangers. (I have done this in an airport, even!) Finally, I've been hugely lucky in the people I have as relatives, friends and associates. People in my life tend to listen to me, to treat my problems as real problems and offer whatever help they can, to respect my right to decide things for myself and to take my perspective into account when making group decisions.

Even with that, though, I've still experienced some of the silencing tactics listed above. I've been assumed to be incapable of knowing my own mind, my own needs, or my own feelings. I've also internalized some of this stuff: I hold myself to a fairly high evidentiary standard before self-disclosing anything "nonstandard," like bisexuality**, polyamory or (suspected) transgenderism. I do this because I suspect I will be met with an unusual amount of doubt when I try to "come out" as whatever.

I also noticed (along with Norah and Anemone) that some of these barriers and prejudices overlap with those facing people belonging to other marginalized groups.

First, the various items about needing to suppress one's natural way of moving, speaking or expressing emotion reminded me of the double standard governing women's, and people of color's, public expression of anger. If a man is assertive, a woman doing the same thing will be considered bitchy, shrill or hysterical. Similarly, a person of color speaking up, voicing disagreement, or complaining about being wronged, will be seen as much more aggressive and out of control than a white person doing the same thing would be. Black men, in particular, are always assumed to be violent thugs, even when they're just minding their own business.

Lots of the items about being pathologized also echo much of what women experience from doctors and from popular notions of female biology: if a woman is angry, or frazzled, or upset, or in any way "off," she'll probably be asked if she's menstruating. She's also held to a much higher standard in general for staying calm, civil and reasonable --- even in very heated discussions --- lest everything she says be chalked up to "hormones" and ignored.

With the specific matter of one's love life being seen as inherently pathological, there's overlap with the double standards gay and lesbian couples face. No matter how stable and healthy a gay relationship might be, it's usually judged less legitimate than even the wobbliest straight union, which feeds into double standards around marriage and adoption.

With the items relating to medical care, and having one's complaints ignored as being just part of autism, there are obvious intersections with other invisible disabilities, especially those involving chronic pain. People with chronic pain are commonly told they're imagining their pain, or that they need to suck it up and stop dwelling on it. There are also intersections with fat --- see this blog for examples of just about every serious health problem imaginable being attributed to the patient's size, and being dismissed with "Just lose some weight" --- and with femaleness and blackness.

Items about employment discrimination overlap with every other marginalized group: people of color, poor and lower-class people, fat people, ugly people, visibly disabled people, invisibly disabled people, women (in all but a few female-dominated spheres, which are usually lower-paid, or become lower-paid as they come to be feminized), trans people, gay people, and sex workers. Items dealing with anxiety over whether to disclose one's membership in these groups applies to all identities it's possible to hide --- like, say, atheism(or membership in any minority faith), being gay, being trans, or having an invisible disability.
The other items that strike me as being almost universal among marginalized groups (at least, those that currently have an active civil-rights movement) are these, which deal with speaking publicly about autism-related issues:

I am never or rarely asked to explain what it means or what it's like to be neurotypical.

I am allowed to use the word "we" without being accused of trying to speak for all neurotypical people.

People are not pre-inclined to view anything I say in certain ways because I am neurotypical.

My neurotypicality is never used as a joke.

If I achieve some sort of success (academically, professionally, socially or otherwise), I will not be patronizingly turned into an "inspiration" for other people.

If I write an autobiography, it will be labeled a book about me as an individual and/or a book about specific things I have done (acting, mountain-climbing, sport, science, music, whatever) rather than a book about neurotypicality.

...and these, about engaging with potential allies:

If I make even a half-assed attempt to look like I advocate for autistic people, I will be considered a hero, and I will not be considered to be acting out of self-interest. Autistic people will be afraid to call me out on my obvious abuses of nonautistic privilege because "beggars can't be choosers" when it comes to allies.

No one expects me to gratefully embrace them as an ally when they tell me that they support an organization that's dedicated to preventing more people like me from being born.

...and then these, about one prominent (or notorious) autistic standing in for all autistics:

People do not assume that NTs all have the same taste in food, books, music, film, television shows and similar.

People do not assume that all NTs have the same views on politics, religion or philosophy.

If a non-NT *does* say that non-NTs (or certain types of non-NTs) are better than NTs, I do not have to explain millions of times that I do not agree with this person. Nor do I have to repeatedly tell everyone that accepting my life as valuable does NOT mean assuming others are inferior.

If I tell someone my neurotype, they will not automatically assume that I must be just like another person of my neurotype that they know.

All of these things --- the need to be extra careful when speaking publicly, both to avoid seeming angry, whiny or irrational and to try to fit as many different issues and perspectives into what you say as you can, because you know you might be the only member of your group many members of the dominant group have ever encountered --- I've seen in just about every other civil-rights movement I know anything about. Some might have more of one tendency than the others --- I don't think women typically get lumped in together as some sort of hivemind --- although you could make a case that feminists do --- but one thing I do see a lot of in mainstream feminism (not so much in radical feminism, which tends to distrust men) is the extra-low standards for male allies. Mainstream feminists are often so overjoyed that a man might be interested in feminism that they're willing to praise him much more for writing, saying or doing something that would be totally unremarkable coming from a woman. The black civil-rights movement seems to have the opposite pattern: white allies do not occupy a privileged spot within their movement, as male allies seem to do in feminism, but society at large does a terrible job of seeing black people as individuals. This, despite the fact that the black civil-rights movement is one of the oldest movements in the U.S., and its leaders have been speaking --- and disagreeing --- publicly for close to a century now!

The last universal I can think of is the invisibility of people belonging to more than one category. Feminism and GLBT activism often act as though only white, able-bodied, neurotypical middle-class women's/queers'/trans people's issues are feminist/queer/trans issues, and, just as often, female, gay, trans or disabled people of color are marginalized (or oppressed --- certainly women within more conservative communities, like immigrant enclaves from patriarchal Muslim countries, are oppressed as immigrants and people of color from without and oppressed as women from within) within their communities, and, though I don't see much of this within the disability-rights movement itself, disabled people are often assumed by society at large (and doctors and caregivers in particular) never to be gay, or trans, or have an otherwise complicated identity. A lot of this is specific to sex- and gender-related stuff, as most non-disabled people think of disabled people as large children, and thus asexual and not concerned with gender identity.

*Another recent post of hers that I liked is this one, of which I was quite forcibly reminded in the comment thread on this post at Sarah's blog. When did feces-smearing become one of the Hallmarks of Actual, Real Autism, anyway?

**I didn't know I was bisexual at first; because my first serious love was a woman, and because I was generally indifferent to men at an age when most people were dating and having sex, I assumed I had to be a lesbian. Of course, later on, after I had been calling myself "lesbian" for some years, and had IDed myself as such to all of my friends, I fell in love with one man, and then another. I'm sure the ol' credibility hasn't been quite the same since then.

Where Neurodiversity Meets Feminist Theory: Executive Summary

This series of posts (Part I, Part II, Part III) was written in response to this article by Amherst College Professor of Women's Studies and Political Science Kristin Bumiller, which appeared in the Summer 2008 issue of the feminist journal Signs.

In her article, Bumiller describes the neurodiversity movement, sketches a history of knowledge about and attitudes toward autism, and draws analogies between the social model of disability and feminist theories about the social construction of gender. Both movements, she argues, seek to enable their constituencies (women, people with disabilities) to participate more fully in democratic societies by reorganizing those societies so that those groups are no longer disadvantaged.

She calls those "antinormalization" strategies for social integration --- rather than seeking to enable more people to meet society's standards for full citizenship, they seek a loosening of standards. I chose to highlight two issues where feminism and neurodiversity (and disability-rights activism in general) both urge antinormalization strategies: caregiving and gender roles. As it stands, caregiving is done primarily by women, either within families for no pay or within institutional settings for little pay, and the relationship between the caregiver and the person with disabilities tends to be a hierarchical one in which the person with disabilities has relatively little autonomy, dignity or control. I think that if there were more choices between full independence --- home ownership, full-time employment, car ownership, etc. --- and total dependence --- the institution or group home --- everyone would be able to live in the way that best meets their needs, and pressures would be lifted from both women (who currently do most of the work of caring for elderly or disabled relatives) and disabled people (who don't want to be burdens to their families, and are easily guilted or browbeaten into choosing living arrangements that don't suit them but are convenient for their families).

Where Neurodiversity Meets Feminist Theory (Part III)

The last issue I want to address from Bumiller's article is the relationship between neurodiversity in particular (and the disability-rights movement in general) and feminism. She thinks they complement each other well in terms of agitating for, on many fronts, a more open, pluralistic and free society:

The neurodiversity movement, despite its own understanding of itself as engaged in a civil rights struggle, represents a novel form of group-based advocacy. Under present conditions, antidiscrimination principles provide an inadequate basis for the large-scale provision of services and educational opportunities for people with autism (O'Brien 2005). Many typical citizens resist inclusion of people with autism to avoid exposure to uncomfortable interactions with people whom they perceive to be antisocial, gender-inappropriate, or simply odd. More serious obstacles to inclusion result from the failure to support the high costs of treatment programs and the perceived threat of autistic people as dangerous. The responsibility of assuring disabled people's place in society goes far beyond the commitment to preserving individual rights; it necessitates a broader agenda as formulated by feminist disability studies. A more expansive model of inclusion needs to counteract the pull toward normalization and stake a claim about the harmful effects of devaluing all kinds of diversities, including those relating to gender, sexuality and race (Baglieri and Knopf 2004). Moreover, it involves challenging a de facto scheme of social exclusion created by a diminishing welfare state and the provision of fewer resources for supporting people with disabilities (Baker 2004).
... Many aspects of [neurodiversity] effectively articulate a nascent feminist agenda and contribute to the antinormalizing efforts of feminists supporting diverse causes such as the rights of intersexed persons, support for alternative family forms, and genetic diversity.

On their own, in other words, the normalization strategies might make it easier for disabled people (or women) to meet the standards applied to able ones (or men), but they'll never entirely erase the gap, or do anything about the fact that people with such widely varying circumstances are asked to conform to a single standard in the first place.

Another area I see feminism and disability-rights perspectives reinforcing each other is on the question of caregiving. This might not seem like an obvious choice, since you often see feminists and disabled self-advocates at odds over this issue: when disabled people assert our right to adequate care in our own homes (or wherever we choose), feminists argue that we are also claiming entitlement to the underpaid or unpaid labor of women. (See the feminist blogswarm over Ashley X for ample evidence of this conflict).

But when you think about it, modern industrial capitalist society's way of dealing with children, disabled people, elderly adults and every other group that needs help with daily tasks is exactly what you'd expect from a society in which women are invisible second-class citizens. When women are not valued as highly as men, women's work is not regarded as real work, and obligations that fall under the umbrella of "women's work" (say, care for the old, the sick and the disabled) will be more likely to be dismissed as "family responsibilities" in which government meddling is unwarranted.

Making society more inclusive, therefore, means not only eliminating the barriers that keep marginalized people from participating fully in society, but also allowing for a far greater range of available lifestyles. As it stands, the options for attaining housing form a continuum between complete independence (i.e., renting or buying a home of your own, and living in it by yourself) and complete dependence and lack of agency (i.e., living in an institution or group home), with a range of options (in-home care, living with relatives, etc.) in between. I do not think any of these options should be abolished --- with the possible exception of institutionalization --- but I would like to see other kinds of choices added to the list. What about cohousing projects tailored to certain groups' needs? What about neighborhoods that are more like extended families or groups of friends than strangers who just happen to live near each other? I can't come up with many examples offhand, but the kinds of supported-housing options I'd want to see are more relational and egalitarian than institutional. As it is, the relationship between the nonfamily caregiver and her client is a very impersonal one; the caregiver is getting paid (not much) to do certain things, and she has very little incentive to go beyond those duties. It's also a hierarchical relationship, in which the caregiver has power over the client and can make (some) choices for the client, with any objection the client might voice likely to be taken as further evidence for his or her instability and need for further supervision and restraint. I think that if there were more flexibility in community planning and housing development (to take one example among many), more cooperative supported-living schemes would crop up, with groups of disabled people sharing the responsibilities of living together, with a reduced need for external care and support.

Where Neurodiversity Meets Feminist Theory (Part I)

There's an interesting article by Amherst College's Kristin Bumiller in this past summer's issue of the University of Chicago's women's-studies journal Signs, titled "Quirky Citizens: Autism, Gender and Reimagining Disability."

It's a long article, but it still seems to jump around a lot between subjects. That's one of two major gripes I have with this piece, that once Bumiller gets deep enough into a topic to say really interesting things about it, she moves on. (The other gripe I have is with her tendency to depict the neurodiversity movement in what I think are overly broad strokes, which might be remedied by providing more quotes to back up assertions about what neurodiversity is, and by acknowledging controversies within neurodiversity where they exist. It would be really hard to do all that and have something short enough to have much of a shot at publication, though, so I can hardly blame her for oversimplifying the stuff that's not part of her argument).

The article is kind of complicated, narratively and structurally: she seems to tell the story of the history of autism, and the slow change in attitudes toward it, but at the same time she takes frequent breaks to discuss questions of gender as they arise. Since she does not advance a single, sustained argument but instead jumps around to look at a bunch of different topics, my responses to (some of) her points will be similarly scattershot.

The most interesting thing that stuck out to me was her categorizing of the different strategies of integrating autistics into society: she draws a distinction between "normalization" strategies that seek to bring marginalized groups more in line with the majority group (and thereby enjoy a wider range of social privileges) and "antinormalization" strategies that, rather than make it easier for more people to act like the standard white, male, middle-class person, try to make society more tolerant of differences.

Here's Bumiller explaining the rationale for "normalization" strategies:

Feminist theories have emphasized how in modern capitalist societies the privileges of citizenship are contingent on one's ability to embody the norm. In fact, citizenship often defines the primary dimensions by which we measure normality; the good citizen is an avid consumer in the market, makes appropriate demands on the state, and conforms to conventional family forms. The disabled, who experience a disproportionately high poverty rate in most Western societies (Burchardt 2004), are a variant of citizen outside the norm and are often seen as presenting an unwanted drain on the market economy like other groups that are considered undesirable because of their class, race or criminal record.
...Disability programs often state their objectives in terms that suggest their capacity to assure more normal social participation (e.g., promoting independent living, employability, functional social skills, and self-management). As applied, such goals often preclude individuals with disabilities from resisting norms that counter the political ideal of independence (like choosing to live in the company of one's family of origin rather than independently). (Smith 2001)

Now, here's her explanation of "antinormalization" strategies:

Antinormalization strategies potentially form the basis for a more far-reaching project whose aim is to shift the goal of the disability movement from simple demands for inclusion to a utopian vision of a society that values human diversity. This kind of activism has been adopted within the gay liberation movement, including, for example, actions that deliberately destabilize assumptions about proper sexual conduct in public places. To a lesser extent it has caught on among disability rights activists and has been applied in protests that hope to destabilize conventional images of the disabled. In its most radical form, antinormalization is devoted to pushing for the acceptance of difference and its full expression in an open democratic process. As it is put into practice, activists are likely to promote antinormalization side by side with normalization, either as mutual or contingent empowerment strategies (Meeks 2001). This grander scheme for social inclusion raises expectations for accommodating those identities that traditionally have been marginalized. This is important to a feminist politics that hopes to value disabled people's lives, respond to gender-based disadvantage, and expand our views of meaningful citizenship. (emphasis mine)

This scheme --- normalization vs. antinormalization --- makes for a pretty odd way of grouping different approaches to social integration. In the article itself, both the Americans with Disabilities Act and ABA for autistic children --- two things that could hardly evoke more markedly opposite reactions from most autistic self-advocates --- are classed as normalization strategies. Because of that, I'm not sure how useful those terms are for someone trying to navigate the confusing thicket of choices available to a novice advocate or self-advocate. Particularly, I think the "normalization" group ought to be broken down further, possibly along the lines of what is being normalized, and to whose benefit. For instance, there's a world of difference between, say, environmental supports that allow greater participation by disabled people in "normal" society by removing whatever physical, logistical or social barriers had previously kept them out, and "educational" strategies geared toward teaching socially or behaviorally "disordered" people to look, act and speak in ways that are already socially acceptable. The first benefits all disabled people; even if not every disability is accommodated immediately, the legal framework and political precedent exists to make it likelier that they will be. The primary beneficiary of the second strategy is society, whose institutions do not have to reconsider their approaches to dealing with a diverse population when the outliers can just be persuaded to suppress their differences. Also, besides its fundamental conservatism, the second strategy also creates a hierarchy among disabled people that favors those who can more easily pass as normal.