All Developmental Disability Is Autism?

Amanda Forest Vivian pointed out something interesting in this post (about a singer using the words "autistic" and "retarded" pejoratively, and then apologizing for it): People seem to be confusing autism, one particular developmental disability, with developmental disability in general.

Here is what she says:

There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism. Now the opposite seems to have happened--for example, when people find out I work with someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being "autistic"--even though intellectual disability is the most common developmental disability!

I thought of two reasons why this might be happening, one simple and one not so simple. The simple explanation is all the Autism Awareness campaigns --- people are hyper-aware of autism (aware that it exists, anyway; maybe not always of what it is), and have forgotten that other developmental disabilities exist. (Or maybe it's not so much that they've forgotten, but that the concept "autism" is always lurking near the forefront of their minds, ready to be applied to any person whom they might previously have categorized as retarded, crazy, spastic, etc.)

Also, with how much talk there is of an Autism Epidemic, people might be expecting to see autistic people a lot more frequently than they used to. In some ways, this is good --- people know that we exist, and that we live right alongside them and do many of the same things that they do --- and in some ways it hasn't gone far enough --- people don't seem anywhere near as aware of the existence of autistic adults as they are of autistic children --- but maybe it has also made it so that people expect to see more autistic people than there are, and maybe they're filling up the gap between how many autistic people they expect to see and how many autistic people they do see by lumping other developmentally disabled people into that category. 

It's annoying because autism is not the same as other developmental disabilities, and autism awareness at the expense of other disabilities might make it harder for people with other disabilities to get people to understand them, or make the accommodations they need as opposed to the accommodations autistic people are understood to need.

The second, harder-to-explain thing that occurred to me was that maybe the substitution of autism for developmental disability in general might reflect a value judgment*.

Non-disabled people are afraid of disability. They're afraid of disability because they know it could happen to them (or to their kid, if it's a developmental disability), and because this is an ableist culture that tells people that a life with disability is akin to death**. (Though, mercifully, I think there might be starting to be a little pushback on that point making it into mainstream consciousness --- disability activists have always said that our lives are worth living, but now a few scholars and journalists, here and there, seem to be listening.)

I think Western culture also fetishizes intelligence***, and sees it as one of the few things that can make up for the monstrous faux pas of having a disability in the first place.

You can see a marked difference in how allistic people talk about the autistic people they see as "low-functioning" --- i.e., having intellectual disability**** --- versus those they see as "high-functioning." The former they talk about as if they were not people at all, and in frankly eugenic terms about how much better off everyone would be if they didn't exist; they talk about how expensive such people are, and what a terrible burden they are on their families, the state, or both. If they mention quality of life at all, it's only to say something like, "Nobody could want a life like that..."

Attitudes toward the latter group are somewhat more complicated. Especially with the stereotypical "Aspie," whose impairments are minimal and only affect social interactions and are offset by exceptional intelligence and aptitude for math, science, or computers. They are also thought to be (at least, in their pop-culture incarnation) hyper-rational, like Vulcans, their thought processes uncluttered by emotion and petty interpersonal concerns. (This is an ambivalent form of idealization --- I usually write about it as a negative stereotype, since it also implies that we have no feelings and are amoral, and also that we are something not quite human. I have come to mistrust, intensely, any stereotype that carries that implication, even if it is ostensibly a flattering one, because "you're not human" too easily segues into "you don't have the same rights and protections a human would have." And yet I think there is an element of idealization in it, too.)

So there are competing ideas about these stereotypical autistic geniuses; on the one hand, people tend to mythologize them (or, sometimes, the people who come closest to fitting this stereotype tend to mythologize themselves) as the Prometheuses behind every great technological innovation in human history (c.f. Temple Grandin, "It was probably an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.")

On the other hand, there is definitely a sizeable contingent that would like that category of autistic person to vanish from the Earth as well. I mentioned in an earlier post the growing stereotype of the Aspie psycho-killer (qu'est que c'est), a person whose complete lack of empathy enables them calmly to plan and carry out mass shootings. 

Anyway, my point was that intelligence mitigates the ableist impulse to dehumanize autistic people. Even in autistic people themselves --- how often do you hear, "I'm not disabled; I'm smart!" or some variant thereof? --- you see this come out as a self-defense tactic. I know I used it that way. For me, the problem was that my worldview was too individualistic to see that my individual merits didn't matter; that all people, no matter how smart or stupid, how virtuous or venal, deserve equal rights. I was trying to say, "I'm a person; I deserve to be treated like a person," but because of my internalized ableism it came out as, "But I'm not disabled! You should be treating me like a real person, not a disabled person!"

I think it's entirely possible that this set of biases --- disability is bad, intelligence is good, some autistic people possess intelligence --- might play a small role in explaining why a person who sees a developmentally disabled person jumps to the conclusion that the person is autistic. 

I've also noticed a strain of wishful thinking that says autism isn't really a lifelong condition --- it can be treated, or cured, by (in descending order of battiness) growing up, intensive behavioral training, changing one's diet, taking vitamins and supplements by the fistful, chelation, etc. That might enter into it, too. 

*Obviously I don't think any of this is happening at a conscious level, or with any ill intent. I think that if this is a real thing, and not just something I made up, it's operating at the level of an implicit bias, that you don't even know you have but that can subtly alter what you see to fit what you expect to see.

**Amanda Baggs has written some powerful, if horrifying, things about her own and her mother's experiences with doctors who believe this. 

***I know this is a very controversial statement, given that I am writing this in an American context, and anti-intellectualism is also a thing in American culture! I may write a post about that, too --- how those two contradictory attitudes coexist.

****I'm not sure that that's ALL "low-functioning" and "high-functioning" mean, but the presence or absence of intellectual disability, indicated by one's IQ score, is used often enough in the literature that I feel confident using it myself. And when I use these phrases, I use them to represent what allistic people think autistic people are like, not what I think accurately describes autistic people. Because I think that, while autistic people do vary in how impaired they are and how much support they need, I don't think degrees of impairment map neatly onto a binary of IQ less than 70 or IQ greater than 70. I also think that the same person can be "high functioning" --- need minimal support --- or "low functioning" --- need intensive supports --- in different contexts. Even Temple Grandin, the high-functioning autistic's high-functioning autistic, was what most people would call "low functioning" as a child.

More About Stigma

Miri at Brute Reason has a very thought-provoking post up about social stigma, and whether anyone deserves to be stigmatized.

She doesn't think so, and she gives lots of very good reasons, including these:

When a group is stigmatized, they are considered less than human in some ways. Whichever aspect of them is stigmatized becomes the whole of their identity in our eyes,  and often this means that even if they change the actions that caused them to fall into that category in the first place, the stigma remains. ...
...
[W]ielding psychological manipulation as punishment really, really rubs me the wrong way. The attitude that if someone does something bad they deserve to be cast out and hated and seen as inhuman scares me. I think it's very normal and understandable to want to punish someone for doing a horrible thing, but, as I wrote after the Steubenville verdict, I'm not sure that's the most useful and skeptical response. I feel that our primary concern should be preventing people from doing bad things (both first-time and repeat offenses) and not satisfying our own need for revenge by punishing them.

But, as good as these arguments are (and I am still turning them over in my head, and will probably keep this idea, that stigma and ostracism are inhumane and that there is nothing anyone can do that is bad enough to make them deserving of such treatment, for a very long time*), I'm not sure I can follow them all the way.

Between the ongoing story I've been following in my local newspaper about a girl in my city --- identified only by the initials LP --- who was found locked in a closet in her mother's apartment and my discovery of the Homeschoolers Anonymous blog, and also Libby Anne at Love, Joy, Feminism blogging somewhat regularly about the disturbingly popular child-rearing philosophy of Michael and Debi Pearl, my mind has been more preoccupied than usual with the vilest, most extreme forms of child abuse.

I commented on Miri's blog that, if anyone does deserve to have a stigma permanently attached to them, it's the perpetrators of those horrors, particularly the Pearls (who were not content merely to abuse their own children, if indeed they followed their own method, but who wrote books proclaiming their combination of hard-core obedience training, enforced by frequent beatings, and withholding food from "defiant" children is the only thing that will guarantee a child will grow up to be a Godly person who is saved from Hell) and the mother in this ten-part personal narrative on Homeschoolers Anonymous.

Doing that to a child, for as long as the anonymous author's mother did --- from the spread in ages of the various children in the family, and the author's Conclusion where she mentions that her two youngest brothers are still with her parents and the abuse is ongoing, it had to have been more than a decade --- is a world away from, say, committing an armed robbery. This wasn't a single act, this was a long-term campaign this woman waged against her children. She stayed at home, ostensibly "homeschooling" her children throughout this period, so it's hard to see a line between these acts and the rest of her life. 

Yet, with the LP story, which is just as horrific, and which makes me feel just as much rage on the victim's behalf, I can see more of Miri's point. LP's mother was very young when she had LP, and at several points in the story you can see hints of someone who was overwhelmed, and who might never have done what she did to her daughter if she had gotten the help she needed but probably never asked for. It's hard to see whom it would help to stigmatize her, when she was already probably stigmatized for other reasons (poverty, blackness, living in a subsidized apartment, being an unmarried mother of three children by two different fathers), which might well have contributed to her feeling that the only thing she could do with her eldest daughter was to keep her out of sight.

But the Pearls, and the parents in the anonymous woman's story? They're not stigmatized at all, except by people like me, who have no power in their lives or social contact with them, or people who have left the conservative evangelical Christian circles those people move in. Within that community, they are revered as leaders and role models. I'm sure that this knowledge is part of the reason I want so badly to rain down opprobrium upon them: because, unlike Jacole Prince, they're getting off scot-free, and they continue to believe that what they are doing is right.

And Miri does grapple with the problem of great evil in her post, too --- where I chose to focus on child abuse, she wrote about rape. And she made another great point in doing so:

Being a convicted rapist is actually a very stigmatized identity -- it's just that rapists rarely become convicted rapists. Rape is known to be a Very Bad Thing, but rapists know that they can get away with it if they commit it in certain ways. Despite the stigma, rape is pervasive and rape culture exists.

I absolutely see a dynamic like this playing out in mainstream society's attitudes about child abuse; child abuse is so heinous, so evil, so stigmatized that we can't ever believe anyone we know is abusing their child. So we second-guess ourselves when we start to wonder about a child's suspicious bruises, unexplained absences, dirty clothes, poor hygiene etc. The stigma attached to child abuse is terrible, so we are reluctant to call it down on our neighbors' heads, even if we suspect they are abusing their children. What if we're wrong? We'll have ruined an innocent person's life! 

(This will sound painfully familiar to anyone who has been raped, or who has spent any time reading about rape culture.)

Another thing worth pondering about this problem as it pertains to child abuse is that, when the child who is being abused, neglected, or even murdered has a disability, the abusive, neglectful or murderous parent is not stigmatized so much as they are pitied. The poor dear, she was carrying an impossible burden. 

A mother can appear in a film in which she tells the camera she has thought about putting her autistic daughter in the car and driving off a bridge with her, and the main reaction to this film will be sympathy, not shock or horror. 

I point this out not to argue that parents of disabled children don't deserve sympathy, or much better support than they're currently getting from society at large, but to argue that this reaction leaves no room for the child. They're a person too, and they have the right to food, shelter, medical care, education, love, and as much freedom and autonomy as is developmentally appropriate**. Focusing on how hard it is to care for a disabled child, even if you're only trying to explain the parent's actions, works to excuse the parent and put some of the blame for their fate onto the child. It also works to make life harder for all disabled people, because it makes it sound like we're being unreasonable just by existing, and that attitude is exactly the kind of attitude that resists making accommodations for us, even when those accommodations are not particularly expensive, awkward or difficult.

Particularly when we're talking about children whose disabilities are behavioral, this idea that it's just too hard works to excuse awful things like restraint and seclusion, at home and in school. At its extreme, it can lead to parents keeping their disabled children in dog cages; they see no other way to treat them because it's too hard and it's not like the children are normal children, for whom such treatment would be abusive, no, they're abnormal children for whom it is necessary.

So even while I see that a heavy stigma attached to child abuse can be counterproductive, in that it might discourage people from reporting their suspicions, I also think there are some kinds of abuse that are not heavily stigmatized, that are even excused (i.e., abuse of children with disabilities, which is often framed as a tragic consequence of disability) or met with approval (i.e., abuse within insular communities that don't share the wider culture's norms).

And it makes me furious that there isn't a heavy stigma, that people like, say, Michael and Debi Pearl don't even think they've done anything wrong, and sleep the untroubled sleep of the just.

*"Keeping an idea" is what I do when I read or hear something that blows my mind, but that I do not immediately know whether to accept it as truth. I kept a lot of ideas related to feminism in the (long) time before I decided I was a feminist, and I kept an idea of Richard Dawkins's that I now think I do believe is true, that raising a child to believe in Hell (at least, a Hell that they could go to --- I'm not sure it's true if Hell is only for big evildoers like Hitler and Stalin) is an abusive practice. I'm also keeping the idea that veganism is a moral imperative for those who are able to adopt it. A lot of the ideas that I keep are of the form "actually, this thing that we do all the time is bad, and you should stop doing it/get other people to stop doing it.")

**This notion --- that freedom and autonomy can't be absolute when you're talking about children --- is actually more complicated than it sounds, especially when we're talking about children with disabilities, or dependent adults with disabilities. How can you define what is "developmentally appropriate" for a child whose development has been atypical? Especially if said child is ahead of his age in some ways while also being delayed in others? (This was me, and I suspect it is most autistic people!) I know only this much: the way these decisions are currently made gives too little freedom to developmentally disabled adults.

New Medicaid Regulations Are Open to Public Comment

A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.


That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.


The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.


The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page  is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.


Here is the proposed definition of "home and community-based setting":

(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities. 

(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan. 

(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected. 

(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented. 

(v) Individual choice regarding services and supports, and who provides them, is facilitated. 

(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan: 

  (A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity; 

(B) Each individual has privacy in their sleeping or living unit:         (1) Units have lockable entrance doors, with appropriate staff having keys to doors;         (2) Individuals share units only at the individual's choice; and         (3) Individuals have the freedom to furnish and decorate their sleeping or living units. 

(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time; 

(D) Individuals are able to have visitors of their choosing at any time; and  

(E) The setting is physically accessible to the individual.

They also spell out what a "home and community-based setting is not:

Home and community-based settings do not include the following: 

(i) A nursing facility; 

(ii) An institution for mental diseases; 

(iii) An intermediate care facility for [people with intellectual disabilities] 

(iv) A hospital providing long-term care services; or 

(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.

And here is the definition of "person-centered service plan": 

The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must: 

(1) Reflect that the setting in which the individual resides is chosen by the individual. 

(2) Reflect the individual's strengths and preferences. 

(3) Reflect clinical and support needs as identified through an assessment of functional need. 

(4) Include individually identified goals and desired outcomes. 

(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS. 

(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans. 

(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. 

(8) Identify the individual and/or entity responsible for monitoring the plan. 

(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation. 

(10) Be distributed to the individual and other people involved in the plan. 

(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart. 

(12) Prevent the provision of unnecessary or inappropriate care. 

(13) Other requirements as determined by the Secretary. 

... and rules for how the service plan should be drawn up:

Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process: 

(1) Includes people chosen by the individual. 

(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions. 

(3) Is timely and occurs at times and locations of convenience to the individual. 

(4) Reflects cultural considerations of the individual. 

(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures. 

(6) Offers choices to the individual regarding the services and supports they receive and from whom. 

(7) Includes a method for the individual to request updates to the plan.

(8) Records the alternative home and community-based settings that were considered by the individual.

(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)


I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.  


What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.  

City Mouse, Country Mouse, Autistic Mouse

There's one more thing from Unstrange Minds that stuck in my head, that I didn't think to include in this post and which probably deserves its own post anyway, given how much stuff was already in the other post.

Anyway, in the chapter on autism in South Korea, Roy Richard Grinker alludes to something I've seen mentioned before, and am curious about.

While describing differences between rural South Korean villages and the capital city of Seoul in how these communities treat their autistic members, Grinker mentions some research conducted by the World Health Organization comparing how well people with mental illnesses fare in developed vs. developing countries:

An agricultural area often belittled by Koreans and long neglected by the government, Cholla-do remains the most underdeveloped region in one of the richest countries in the world. Cholla residents are familiar with discrimination and adversity and find it hard to improve their class and social status. They consider it a great success to make one's career in Seoul, where more than 25 percent of South Korea's 44 million people now live.
...
Still, after asking a few questions here and there (Are there any children who don't speak well? Are there children here with brain disorders?), I found a sixteen-year-old boy and a nine-year-old girl in a mountainous county. Everyone seemed to know about them. And when I talked to the barber and the local grocery-store owner about them, there was no hint of discomfort or pity. Peter, as his mother wanted him to be called, was good with bicycles and served as a messenger for two villages, delivering letters and packages with a broad smile. He saw a doctor once every two months and was medicated with a small dose of an antipsychotic drug that calmed his anxiety and some of his repetitive movements. The girl, Soo-Rin, was in the village with her single mother only on weekends because she attended a special school for children with Down syndrome, cerebral palsy, and mental retardation. But everyone knew her too. Her room at home was lovely, pink with lace curtains, stuffed animals, and Disney characters. Her mother said she takes a medication at school to help her pay attention, but she didn't know what it was called. In these villages, you can find proof of something the World Health Organization has been arguing for years: People with mental disorders do better over time in remote, nonindustrial societies than in urban, industrial ones.

I'd read about that research before, in Robert Whitaker's book Anatomy of an Epidemic; in that book, he argues that the reason the people in developing countries are more likely to recover from acute mental illnesses, and don't become chronically mentally ill as often as people in developed countries, is because people in developing countries often don't have access to psychiatric medication, which Whitaker argues actually worsen a person's condition over time.

Grinker lists an earlier book by Whitaker --- Mad in America --- in his bibliography, along with a book-length follow-up to this study (full text here), but he is not making Whitaker's argument here. Instead, he thinks the people in the rural villages are more accepting than the people in the cities:

This is not to say that life for the disabled is easy in the villages --- even someone with a mild speech impediment, who is otherwise normal, will have just as much trouble finding a spouse as an urban dweller with the same problem. And parents can be just as devastated. One man confessed to me that in his despair he once took his young autistic son high up in the mountains, intending to slit his throat, but couldn't bring himself to do it. But for most parents of disabled children, life in the rich city of Seoul is more stressful than in the more humble village. One of the paradoxes of rural life is that people in the villages tend to be relatively accepting of diversity. Little remains secret, and there seems to be a place for everyone. In the rural areas, people assume that things would be much better for their children in the city. But in the city, in the sprawling, indistinguishable apartment complexes of Seoul, most people do not know their neighbors, even though they watch them as closely as they can. The pressures to measure up can seem overwhelming, and families try to keep anything that might reflect badly on their status hidden from view. The moment you bring your disabled child outside in this densely populated city is the moment you are confronted by strangers, people who will watch and judge you.

Later on, he says something that would seem to rule out Whitaker's non-drug hypothesis: the children he met in the rural villages were taking psychiatric medications, while very few of the children he met in Seoul were taking any.

He sees this as symptomatic of the prevailing viewpoint in Seoul that autism is basically a death sentence; if nothing can make an autistic child non-autistic, what's the point of drugs or therapies? It all just costs money, and with drugs there's also the matter of side effects to consider.

(I actually thought his interviewees' concern about the side effects of psychotropic drugs was sensible; I thought Grinker in this passage was being way too uncritical of US psychiatrists' willingness to prescribe these drugs to children when so little is known about their long-term or developmental effects. I think his point about the all-or-nothing mentality is a valid one --- and that mentality is certainly not restricted to South Korea! --- but I don't share his faith that drugs always lead to better quality of life. Indeed, often their use is a symptom of the same societal rigidity that he blames for making urban life so much harder for autistic people to participate in than rural life.)

Anyway, his mention of those WHO studies reminded me that I had wanted to read them (and there are still more follow-ups, meta-analyses and similar studies from more recent years, too), and post about them.

Qualified Candidate Barred From Job; U.S. Government Sues Employment Agency

My heart really goes out to Jason O'Dell; he and I seem to be in similar circumstances.

He recently applied for work as a lab technician in Frederick, Maryland, using an employment agency called Randstad US. Everything had been going pretty well --- Randstad had decided that he was exceptionally well-qualified for this particular job, so they "fast-tracked" his application; the company he had applied to had also expressed interest in hiring him --- until O'Dell let it slip that he had Asperger's.

When that happened, the position he had seemed about to get seemed to evaporate. His contacts at Randstad were telling him it had "been put on hold," but really they were continuing to recruit other candidates, and eventually filled the position with someone who was not Jason O'Dell.

In response to this, the U.S. Equal Employment Opportunity Commission is suing Randstad for discrimination --- in pulling O'Dell out of consideration for employment right after he told them about his disability, they violated the Americans with Disabilities Act's prohibition against employers (or employment agencies!) discriminating against qualified people with disabilities in job application procedures, hiring, promotion, pay, training, firing or any other aspect of employment. They're asking for back pay, compensatory and punitive damages for O'Dell, and revisions to Randstad's employment policies to make the kind of discrimination O'Dell experienced Officially Against The Rules.

Here is the relevant part of the ADA:

Sec. 12112. Discrimination

(a) General rule

No covered entity ["covered entity" meaning an employer, employment agency, labor organization or joint labor-management committee] shall discriminate against a qualified individual [someone who can perform the essential functions of the job with reasonable accommodations] on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.

(b) Construction

As used in subsection (a) of this section, the term "discriminate against a qualified individual on the basis of disability" includes

(1) limiting, segregating, or classifying a job applicant or employee in a way that adversely affects the opportunities or status of such applicant or employee

... and here's a handy little page about employment law; it tells you what your rights are under the ADA, and what you can do if you think they've been violated.

The EEOC also mentions in its press release that fiscal year 2010 has been especially bad for discrimination in employment: they had 99,922 claims, of which 25,165 were disability-related. That constitutes an increase of 17.3% over the number of disability claims filed in fiscal 2009.

I hope they win their suit, and that O'Dell gets those damages ... although even more I hope he manages to get a lab job somewhere!

What a Coincidence

I just wrote a post about people's attitudes toward vaccination --- particularly the extent to which people worry about vaccines causing autism, and whether that worry leads them to skip recommended shots --- and now I see that Sarah was also moved to write something vaccine-related.

From her Tumblr*:

Pro-vaccine advocacy is not the same as advocating for the rights of autistic people or being anti-ableism. Pro-vaccine advocacy can sometimes repeat the same pernicious, ableist myths about autistic people which are so embedded in the anti-vaccine movement.

She's absolutely 100% right; where the anti-vaccine activists' rhetoric implies that it's better for one's child --- and other people's children, for that matter --- to contract potentially life-threatening, vaccine-preventable diseases than to be autistic, the pro-vaccine camp usually responds with "Nobody wants to have an autistic child, autism is a terrible tragedy and we should hurry up and find a cure, but ..."

It's a conciliatory tactic, meant to convey empathy for the clearly-distraught parents who blame vaccines for their children's disability. And that's good, as far as it goes; everyone deserves to be treated respectfully, and to have their feelings acknowledged and respected when they're debating emotionally-charged subjects.

A discourse that rests on the premise that autistic people should not exist isn't one that respects autistic people. It also implies that there are no autistic people participating in, or watching, the debate, and that's just not true. We're here, we have a personal stake in these issues; we deserve to be equal participants in the public discourse around autism.

*I can link to the post itself, but currently if I do that you're not able to read it --- other text overlaps with it. This is one of the many reasons Tumblr fails to appeal to me.

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.
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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. ...
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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). ...
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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.
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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.

Wheelchair Dancer on Gender and Disability in Everyday Interactions

One of the posts highlighed in today's Recommended Reading post on FWD/Forward was this little gem from Wheelchair Dancer, describing a conversation she overheard.

It was between a man and a woman, about the rules of bridge. The man is explaining something very authoritatively, to which the woman, for the most part, listens passively, occasionally asking questions which the man cannot always answer. It becomes apparent that he's just as new to the game as she is --- he's just assumed the role of The Authority in this conversation, even though he's no more an authority on bridge than she is.

As far as the negative power relation between men and women goes, this conversation, sadly, would not stand out were it not for the way in which the woman responds to the answers she gets.

For every thing she doesn't understand right off the bat or simply gets wrong, she claims a disability. So far, she has memory issues, is dyslexic, is losing her mind, is "slow ...". As I listen to her, I suppose that any or all of these things could be true. ... Nonetheless, as the stream of different disabilities continues, I begin to wonder if claims of disability function as a cushion between the painful abruptness of her partner and her desire to do better and earn his acceptance. In other words, the woman may be disabled in all those ways, but in the context of the conversation, disability also serves as an excuse/reason for her "stupidity" in the face of her partner's "brilliance."

Wheelchair Dancer doesn't think it's an accident that the woman's (apparent) disability functions like this --- to diminish her presence, shrink her further and further into the background --- she sees this uncomprehending silence, this unquestioning acceptance of the man's greater expertise, this constant deprecation of her own understanding, as part of the way the woman has chosen to "do disability":

She does disability in the old way, a way in which the value of our diverse minds and bodies is not acknowledged. Her disability is a weakness that separates her from an actively feminist goal of being an equal partner in the conversation and the game.

Rather than stop the conversation and ask the man to go slower, repeat something, or rephrase or elaborate on something until she feels she understands what he's trying to say and can either agree with it or challenge it, she stays quiet, unwilling or unable to ask him to adjust his manner of speaking to her needs. She's shrinking herself, subordinating herself to him, taking part in the conversation either on his terms and at his pace or not at all.

A commenter pointed out that, from the way Wheelchair Dancer described him, the male half of this duo could very well have some communication impairments of his own --- on the "sending" rather than the "receiving" end.

I think they might be right, because there are elements of Wheelchair Dancer's description of the man's conversational and interpersonal style --- his rigidity, his lack of eye contact, the apparent effort with which he speaks --- that are in fact features of a disability I have, which does interfere with my ability to communicate via speech.

But even if that's true, and the man, too, has some communication impairment that's making him have to work very hard even to put his thoughts into words at all --- let alone rearranging and streamlining those words so that they are intelligible to the woman, who seems to have receptive language difficulties --- the man would still be using his disability to silence the woman, to shut her out of equal participation in the discussion.

By dominating the conversation, by taking on the role of The Authority, he's still saying that, whatever impairments he may have, he's the one setting the terms for this interaction.

Also, even if they both have disabilities affecting their ability to communicate, she's the only one who ever references them --- and she only references her own disabilities, and that in a self-deprecating way, not in a way that indicates she's asking the man to accommodate her. Whether the man has a disability of his own or not, he's set himself up as the standard against which she has to measure herself. Does she understand his sentences? If she doesn't, there must be something wrong with her, because they're totally clear to him!

So, still working under this assumption that both participants in this conversation have language difficulties (receptive or expressive), we find that both partners have different ways of "doing" disability, and --- surprise! --- both of them involve the woman shutting up and retreating into the background.

"What Is High Functioning?" Tumblr

Someone (I think it was Amanda Forest Vivian, but I'm not sure) started a Tumblr for the purpose of providing highly specific answers to that question --- what is "high functioning"?

People are encouraged to submit anecdotes about people with developmental disabilities being labeled "high functioning," and what specific thing they think led the person to label them that way.

Some specific examples of things that get people sorted into the "high-functioning" category:

• Asking what it means to "exchange a look"
• Initiating a conversation with another student in a college dining hall
• Requesting a peanut-butter-and-banana sandwich in lieu of whatever food they've just been given

(There are also some less-concrete examples of "high-functioning" stuff like being able to speak fluently, carry on a conversation, not having a "routine" and being "independent.")

Anyone can submit a post; they just have to click the "Submit" link in the sidebar and type in the text of their post, a title, and their name and email address.

I love the idea around this Tumblr blog --- to have one place where people can share all the different things "high-functioning" has been used to mean --- and would submit an anecdote or two of my own if my autobiographical memory weren't only slightly better than Wolverine's. (I know that I've been called "high-functioning" fairly often --- at least once in the context of, "isn't she too high-functioning to be here (at a camp for autistic children)?" --- but cannot remember the details of any of these instances. So I don't think there's anything I could contribute that would be of value to this project, which is too bad).

Doubly Deviant: On Being Queer and Autistic

EXECUTIVE SUMMARY: This is a very long, rambly autobiographical post about being bisexual and being autistic: it compares my experiences coming to terms with both of these facts (always knowing about the autism, vs. having to figure out the sexual orientation; and also, doubting the possibility that I could *have* a sexual orientation because I thought autistic people didn't date or have sex, or even want to do either of those things) with those of Amanda Forest Vivian, who is a lesbian, and autistic, and has written about those things at some length at her own blog. I also discuss the ways being autistic has complicated being gay for me --- besides my initial difficulty realizing that what I felt about girls was, in fact, sexual desire, there was also a profound isolation from the larger Gay Community, which I never felt like I could (or would want to) join.
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Amanda Forest Vivian has a post from a while ago about this --- being gay (Amanda uses "same-sex attracted", to encompass lesbian, gay, bi-*, poly- and pansexual folk, and also people who don't really fit into any category but "queer"), but also being different in another way (like having a developmental disability) that might make it harder to navigate an LGBTQ** an LGB social scene.

Here's her description of coming out in high school ---

When I was in high school, someone who wasn't my friend said this to my (secret, closeted) friend, who then told me: "Everyone could see that something was different about Amanda, and then when they found out she was gay, they had an answer."

When I was in high school, the word dyke or lesbian was a way to easily quantify all the things about me that didn't seem right. When I was in high school I felt very alone.

When I was in ninth and tenth grade, I actually brought all this on myself by not denying that I was gay or bisexual, and presenting in a masculine way. I felt this was an important thing to do because other kids needed to see that queer people were just regular people. The problem with this idea is, in hindsight, obvious: I am not a regular person. Being openly queer in a heteronormative environment is a noble thing to do, but maybe not if you have anxiety about pretty much everything and have trouble talking to people.

A lot of my coming-out process happened when I was on a lot of medication and overwhelmed by the relationships I was in. By the time I was in eleventh grade, I was more able to clearly see what was going on, and I knew that I'd made a mistake by not being closeted. My school was very small, and some people were genuinely afraid to be friends with me in case someone said they were having sex with me, and I wasn't a person who could charm my way out of this stigma. But my school wasn't violently homophobic and I feel like a more normal person could have made a difference. It would have to be a person who fit in every way, except one.

--- which reminded me a lot of these much older posts by elmindreda and one of the other Amandas whose writing I love, Amanda Baggs, which postulate something called the "difference slot."

elmindreda:

[M]any of [the people I spend my time with nowadays], even though they seem superficially informed about basic disability issues, seem to believe in the difference slot.

The basic idea is that each and every person has their difference, and it should be respected. Note the singular form, however. When they learn of my autism, which is usually the first major difference to come up in conversation, they seem to think "oh, so that's her difference". They then proceed to fill in my difference slot in their mental table, and everything is as it should be.

Or so they think.

Then, a little while later, I happen to mention some other thing that makes me different from most other people, and their belief system collides head-on with reality. Usually, it's another one of my disabilities that triggers it. This is when they almost invariably go "..." for a while, only to finish with "you have that too?" In other words, "your difference slot is already filled, and you can't have another one."

Amanda (Baggs):

What I'm writing about is similar [to elmindreda's idea of the "difference slot"], but perhaps from a different angle. A phenomenon I've seen over and over again runs something more like, "Please violate only one stereotype at a time."

This can apply even if you have only one "difference" (be that autism, physical disability, whatever).

If you have several differences, of course, the problem becomes exponentially harder to deal with.

What Amanda Forest Vivian is describing --- being in a very normative environment (hetero- and otherwise) and trying to figure out, and come to terms with, how you deviate from those deeply-entrenched norms (which you do in multiple ways that you either cannot yet identify or are struggling to identify) --- sounds a lot like what elmindreda describes: the first difference you name to other people defines you, and explains Everything That's Weird About You, and people resist learning that there's more to the story than that One Thing That Explains Everything.

When you're very young, that first difference you name might not actually be the difference that's most relevant to your day-to-day life, either, but may simply be the first difference you know how to name. This is especially relevant to people whose differences are either a) internal or invisible, something you have to find out about yourself rather than something that's always been generally known about you or b) disabilities that affect your ability to put things into words, or even recognize all the ways in which you differ from most people. (Cultural differences might also factor into (b) --- if you come from a culture that does not discriminate between X sorts of people and Y sorts of people, and you immigrate into a culture that does, you may find that you don't even know whether you're X or Y, and that makes it difficult for you to navigate a social setting in which lots of important stuff hinges on whether you're X or Y.)

I had almost the opposite experience from Amanda's --- my first difference was my autism, which has been generally known about, and accommodated, and I've been able, to varying degrees, to talk about, for as far back as I can remember. As long as I remember being able to think in terms of "me" and "you" and "them" (which for me happened rather later than for most people, I suspect), I knew that I had a thing called autism which meant I was different from most people. As I grew older, I came to understand how I was different, and to be able to tell other people about it, but I always knew that I was different.

I had a very elastic understanding of this difference of mine, probably because I learned I was autistic before I could have any real idea what "autistic" meant, so I pretty much equated it with "whatever I am," adding on "whatever [other autistic person I meet] is, too".

(I had always had plenty of contact with other autistic children, both older and younger, and I also always had books written by autistic people about their lives on hand, so I never really fell into the "autism is *ONLY* what I experience" trap that some autistic people fall into --- it seems to be the flip side of the "impostor syndrome" that many later-diagnosed autistics have).

So, for me, being queer was the late-manifesting difference that made it harder to quickly and easily account for everything odd about me, and accordingly I had tons of self-doubt when I first started wondering if maybe I was gay.

My relative lack of interest in boys (had one crush in middle school, on a long-haired androgynous-looking boy) as I was going through puberty didn't tell me anything --- after all, I was autistic! By this time, I had come to understand a bit of what "autistic" meant, and one of those things --- communicated mostly by my mom's not thinking it a priority to educate me about sex and relationships --- was that I might never have sexual feelings, or act on them if I did. This was a boon in some ways: I was never assumed to be straight, exactly, and it was never taken for granted that I would marry by age twenty- or thirty-whatever and have x number of children. I was allowed to develop sexually at my own pace, and in my own direction, rather than feeling like I had to fit a mold. But, at the same time, since I wasn't assumed to be a sexual being, I felt like I couldn't really be sure that the things I was feeling were sexual feelings. So maybe I *did* expect to fit a mold, but that mold was asexuality rather than monogamous, married heterosexuality.

Accordingly, I waited to come out until I had clear, unmistakable evidence that I was gay: a really intense, serious crush on a female friend of mine who was bisexual and "out" about it.

Once I was absolutely certain I felt "that way," however, I thought nothing of telling people so if it came up in conversation. (I never lied, or tried to hide it from anybody, but then neither did I feel like I had to go around telling everyone I knew that I was now a lesbian. Either they'd find out sooner or later, or they didn't need to know).

It did surprise me, though, when in my last year of college I ran into a girl who'd been in my high-school graduating class --- whom I hadn't really known all that well; we went to a huge high school and knew each other by sight and by name, but never talked much and weren't friends --- and she told me that she, and a whole group of other people I didn't know or didn't know very well, apparently thought I was probably a lesbian. This surprised me because, as I mentioned, I was only really "out" to my friends --- the people I talked to enough that it eventually came up --- and I had figured I was more or less invisible to the rest of the school. So apparently I differed from whatever my high-school culture considered a "normal girl" enough, and in enough of the right ways, that people would think I must be a lesbian without ever having heard me say it. Either that, or they noticed me sticking around the girl I loved like I was actually glued to her side, and figured I must be on rather more than just "friendly" terms with her*** ...

I was also not the only lesbian, gay or bisexual person at my high school, either, so I had none of the anxiety that Amanda describes about being the Queer Model Citizen who shows everybody that queer people are people just like everybody else. If people needed that lesson, there were lots of people at my school who were better qualified (i.e., more charismatic, more involved, more flamboyantly out) than I was and more eager to do it besides.

Here, from later in the post, is the part of Amanda's story that most closely matched my own:

Even though my school is ssa-positive, most of the people at my school are straight just like most of the people in the world. I have enough friends that I never feel lonely, but I don't belong to a group of friends (partly because I don't like groups), and I know very few ssa people because I don't have stereotypical queer interests.

A few years ago I posted on a lesbian advice forum saying I was depressed and stressed because I wanted to believe I would someday get married and have kids, but that I had never been in a relationship and didn't think I ever would be. People responded telling me that if I was on a date with a girl, I shouldn't tell her I wanted to have kids, because she would think I was creepy. One person went to my livejournal, saw where I went to school, and told me that my school wasn't anyplace to complain about and that I should "stop whining." She provided a list of various social groups and activities that would help me to meet "dykes," including eating in a co-op (which would mean being organized enough to eat at the same time every day, taking up a lot of executive function cooking and cleaning, and constantly interacting with a large group of people I didn't know).

While there are a few differences --- I don't want kids, and I never got depressingly counterproductive advice because I never thought to ask for advice in the first place --- this sort of inability to find other queer women even on a campus with a burgeoning, vibrant queer culture (well, for Kansas anyway --- I went to KU, which, while it might look straitlaced and boring to someone from California, does have a fair amount of gay-themed student activities) is exactly what I experienced at college, too.

I wasn't closeted, and I wasn't isolated in general --- I just needed to socialize on my own terms, one on one with people I met in classes or in the dorms (or, sometimes, at the gym, which was my other main on-campus haunt), which might eventually lead to me joining a group of friends, rather than trying to meet people at huge gatherings of strangers (like a party or student club; I've never been much of a "joiner" because of my tendency to fade into the background and not enjoy myself at group events), so this ruled out my meeting other lesbian and bisexual women through formal channels, like the campus Queers & Allies club or gay-oriented parties and bars. Unfortunately, the informal, one-on-one processes I used to make friends --- and which worked really well in that regard --- never linked me up with any queer women. So I went through college knowing that lesbian and bisexual women were around, but I just wasn't meeting them.

Rather than belong to a lesbian or queer community, I just existed as a lesbian. (I didn't know I was bisexual until later in college). What I had growing up as an autistic person --- personal acquaintance with a number of other autistic children, access to autistic adults' life stories --- I did not have when I was coming out as a lesbian. I knew I liked women, but never met anyone who might reciprocate those feelings.

What compounded my isolation was my total lack of anything resembling gaydar. I really do have the inability to "read" faces, body language, tones of voice etc. that has become a stereotypical characteristic of autism, so I need to be literally told 1) that a given person is gay or bisexual or 2) that a person is attracted to me. I neither flirt nor perceive flirting in another person, which might well have told an unknown number of interested lesbians that I wouldn't welcome their attentions.

So when Amanda says this ---

I used to have a political problem with the way other ssa people behaved. Whenever I thought about it I got so upset I didn't know what to do. The way I saw it, there were two kinds of ssa people:

1. "gay" people (such as people involved in the HRC) who were very normal and wanted to have normal jobs and normal families. They didn't think much about trans people, non-homosexual sexual minorities, or anyone who wasn't normal.

2. "queer" people (such as a lot of people at my school) who were very into not being normal, playing rugby, performance art, co-ops, and so on. Many of them identified as trans but didn't seem to realize that some trans people actually take hormones and get surgery and are poor, and are not students at a liberal arts college who change their pronouns every week.
...
I felt weird because I wanted to get married but I wasn't normal and I felt like "gay" people wanted to help normal people get married and "queer" people were anti-marriage so neither one included me.

--- I nod because the feeling of not belonging, of not finding what one is looking for in a group, is familiar to me, even if the actual dynamics of gay-identified versus queer-identified groups fall far outside my own experience, which is of near-total**** isolation from other women attracted to women, whatever their chosen label or subculture*****.

*According to Genderbitch, it's actually possible to be bisexual (attracted to people belonging to either of two sexes) without one of the categories you're attracted to being the same as your own. When you consider a broader spectrum than just cis men and cis women --- one that includes trans men, trans women, non-binary trans people, intersex people and people in whatever other sex-and-gender categories there might be --- a bisexual person might be attracted to people in any two of these categories. So not every bisexual person necessarily fits under Amanda's "same-sex-attracted" umbrella, but I do (having so far only been attracted to cis women and cis men) and this post is about Amanda's (who is a cis lesbian) experience and mine.

**Edited to reflect a lesbian trans woman and an aspie's criticism in comments that, since I am talking about cis lesbian/bisexual stuff, I shouldn't use "LGBTQ" because it implies an inclusion of trans people that isn't in the post.

***I wasn't, as a matter of fact. I was in love with her, and told her so repeatedly, but she didn't love me. At least, not in a romantic way. We did come to be pretty good friends, though, even after high school!

****I did meet one other lesbian at college, whom I found nice, and attractive, and would certainly have befriended and quite likely have dated if we had ever met again. We just ran into each other one day, outside the dining hall, started talking, and kept talking for a long time eating lunch together. Then we went our separate ways and never bumped into each other again. She played rugby, and tried to interest me in joining, but I was unsure about how much extra time I could spare for practices --- I always took really heavy courseloads, tried to keep my GPA pretty high, and spent one to two hours in the gym every day. I figured if I did much more, I'd feel like I was stretched too thin. So, while I had good reasons for not wanting to add another commitment, I still feel sad about missing that particular opportunity. :(

*****Had I managed to fall in with the Queer Culture Amanda describes, I would probably have found it a more comfortable fit than she did, since the kind of alternative family structures she says they liked to try to create are just the sort of thing I'm looking for: I need kind of a lot of support, day to day, and don't think any one person could be everything I need and also have a life of hir own. So a poly family actually looks really good to me, and indeed my last relationship did somewhat resemble this.