Picture yourself in a room. There's a desk in the middle of the room with a pad of paper and some markers on it. You go over to the desk, sit down, and start to draw. You like drawing. You draw a detailed sketch of some of the trees you can see outside the window. You're just adding the final touches of shading onto it when someone snatches your drawing away from you. You're told that it is a good drawing, but that you couldn't possibly have done it -- because you're a Purple, and Purples cannot draw.
Frustrated but resigned, you go outside and take out your lunch -- apple slices and cheese. You are then told by someone walking by (who knows you are Purple) that you aren't actually eating apple slices and cheese, because Purples don't eat that sort of thing. Never mind the fact that you are sitting there in plain view, eating apple slices and cheese.
Later on, when another person asks what you had for lunch, you say, "Apple slices and cheese". The other person (who has also somehow heard that you are Purple) insists that you must be lying or mistaken. After all, Purples don't eat that sort of thing -- it said so recently in an article about Purples in a popular magazine. You think back to when you were first identified as Purple, and you don't recall there being any mention of apple-and-cheese aversion then -- it certainly isn't in the official criteria, and you tell the other person this. The other person then gets very suspicious and suggests that maybe you're not actually Purple at all, but pretending to be Purple in order to distinguish yourself.
He talks out loud to himself then, muttering something about attention-seeking kids latching onto a label for the sake of being special and different. Never mind that you were identified as Purple by multiple professionals, and that your developmental history reveals plenty of evidence of Purpleness starting in infancy -- the fact that you eat apple slices and cheese has somehow, in this person's view, "exposed" you as a Non-Purple with a desire to distinguish yourself. He says that you really ought to just suck it up and do everything in Non-Purple ways because that's just the way the world is.
You decide at that point to go home, so you get on your bicycle. You're riding along when someone flags you down, hands you three lemons, and asks if you wouldn't mind juggling them. You apologize and say that no, you can't juggle lemons. The other person is shocked -- they protest and insist that you must be able to juggle lemons. After all, you're riding a bicycle! And everyone knows that anyone capable of riding a bicycle is also capable of juggling lemons. You must just be too lazy to juggle lemons -- that, or you are refusing to juggle lemons at that moment because you want to make a spectacle of yourself.
You start to protest again, but another passerby shows up and interrupts. He looks at you and pegs you for a Purple instantly -- his nephew is Purple, so he knows the signs fairly readily on sight. He says that he saw a television show about Purples recently, in which it was explained that Purples can usually ride bicycles, but it is very uncommon for them to be able to juggle lemons. Relieved, you start to walk away, since this explanation seems to have silenced the Lemon Guy.
But you are stopped once again -- by the person who identified you as Purple, who saw the television show on Purples. He tells you that he really admires your bicycle-riding skills, but that he feels terrible that you will probably never experience the sublime joy that is lemon-juggling. You tell him that it's okay -- that as far as your priorities go, lemon-juggling is pretty far down on the list. He insists that while you may be able to get a job someday (particularly since you're a Light Purple, or at least, you appear to be while you are riding your bike), and while you may find some modicum of happiness, there is always going to be something fundamental missing in your experience of being alive. Because you can't juggle lemons. He can't imagine life without lemon-juggling. You tell him that you are a pretty happy person overall, but he mumbles something about "not knowing what you're missing".
You point out that he doesn't know what he is missing in not being Purple, and he says that while it's admirable you seem to have adapted to your condition, you are still living a diminished existence. It doesn't matter that you can do all kinds of other things (some of which he can't even do) -- the lack of lemon-juggling capacity is going to prevent you from enjoying parts of existence that ought to be every person's birthright. In his opinion. You ask why he gets to decide what parts of existence are more important than others, and he says that it should be obvious by just looking around -- that there are just some things that every person ought to be able to do in order to succeed in life. You ask him to define "success". His definition of success involves becoming a high-level lemon juggler, because, after all, "we are a lemon-juggling species".
This kind of thing happens to you regularly. And it is always this absurd.
The above analogy, while admittedly (and deliberately) bizarre in its content, is meant to demonstrate how "the box" -- that is, the limited set of traits and characteristics that a person (by virtue of belonging to a particular category) is supposed to exhibit -- can produce much in the way of absurdity and cognitive dissonance. This is why it is important to bring the concept of the box into the foreground -- a lot of people probably don't even realize that they're using the box, since social consensus often makes boxes of this sort functionally invisible to most people in a society. And this is why the box concept is particularly relevant for people who are configured in ways that don't permit them to sit comfortably in the various readily-available categories offered by default in their culture -- when you can't sit comfortably in what others consider to be a firm and fixed category, you run up against the walls of the box simply by existing.
Boxes Within Boxes
Biology defines "human-ness" through empirical factors -- from the biologist's standpoint, human is a function of DNA. However, not all people are biologists, and most probably tend to define humanity on the basis of fuzzier, messier factors like culture, language, behavior, and shared experience. Furthermore, human societies have a tendency to, on the basis of silent consensus, define particular subgroups of humans as more essentially human than other subgroups. The predominant shared experiences, behavior patterns, and even physical characteristics of the "essential" subgroup become reference points for determining the relative humanity of outgroups.
However, even a brief survey of history -- particularly history within the last two centuries or so -- reveals that the consensus as to who is essentially human (and more recently, essentially a person) cannot remain silent and unquestioned indefinitely. Genetic diversity, environmental change, scientific discovery, technological development and economic fluctuations all contribute toward the enabling of periodic unanticipated paradigm shifts. One such shift occurred when the practice of slavery ceased in the United States. Another occurred when women achieved suffrage. And now modern citizens look back upon times prior to those events as very dark indeed.
But despite the clarity of hindsight with regard to the transgressions and prejudices of our ancestors, the tendency to put some humans outside humanity (and outside personhood, for that matter) on the basis of what seem like rather arbitrary factors persists. Clearly, the question of who (or what) has human DNA is not asking the same question as, "Who can be a citizen?" or "Who is granted membership in the worldwide community of persons by default"? Personhood theory, formulated one way, offers that persons have particular qualities which are (or should be) substrate-independent -- that is, you shouldn't need to be human in order to be considered a person. I am in favor of this formulation of personhood theory since I have long believed that many nonhuman animals ought to be included in the category of persons -- persons fully deserving of the same respect accorded to humans.
I definitely think that personhood theory is probably already benefitting the Great Apes and dolphins of the world, which is obviously proof of at least some positive ethical development. But despite those ethical developments in the area of animal rights as a result of personhood theory, I still come across articles and comments presuming that autistic people are somehow missing some fundamental element of personhood. This seems to be, at least in part, because a human box (or perhaps more appropriately, a person box) has been established over time. So the problem with boxes isn't just limited to the box meant to comfortably contain those of us who are atypical in some way, but also concerns the overly-narrow set of parameters that are often invoked as conditions necessary for full personhood. In an article entitled The Big Question: How much do we know about the causes and incidence of autism?, Jeremy Laurance writes:
In the social world in which we live, the capacity to read situations and respond appropriately is crucial to success and can mean the difference between popularity and loneliness. Autism disturbs something that is core to our being human.
Notice how it is simply assumed that "we" live in something called a "social world" -- a world that apparently excludes autistics, not only from nebulous states like success and popularity, but from humanity altogether. Additionally, there is the assumption here that there is some kind of dichotomous relationship between loneliness and popularity -- as if somehow if you're not popular, you are doomed to a lifetime of miserable solitude. Aside from the fact that popularity simply isn't a priority for many people, including many who aren't autistic, it is not specified which subgroups of humanity a person needs to be popular within in order to be considered popular enough. Obviously no person is popular in every group -- perhaps the quote above is referring to the state of being "popular with one's peers", but even if that is indeed the case, it doesn't make sense to assume that popularity with peers is a good yardstick by which to measure a person's quality of life.(1)
Phrases like "the core to our being human" always need to be questioned when they are encountered. It is obvious that the quote above is not referring to human DNA when invoking the existence of a "core". Rather, it is more likely that the author is invoking something like "human nature" or perhaps Francis Fukuyama's "Factor X", as described in a review of Our Posthuman Future: Consequences of the Biotechnology Revolution in the Harvard Human Rights Journal:
[Fukuyama] is in favor of simply referring to the combination of these elements [of being human] as “Factor X.” The black box referred to as Factor X can be envisioned as an amalgamation of such elements as moral choice, reason, language, sociability, sentience, emotions, and consciousness. The crux of Fukuyama’s argument for regulation of biotechnology rests on the sanctity of Factor X. “We want to protect the full range of our complex, evolved natures against attempts at self-modification,” he writes. “We do not want to disrupt either the unity or the continuity of human nature, and thereby the human rights that are based on it.”
The similarities between the Laurance quote on autism and Fukuyama's notions of the "unity and continuity of human nature" are readily apparent. In both cases we have someone who first attempts to assert that there is some kind of ineffable "human-ness", and then goes on to explain the implications of this assertion in terms of what kinds of people or practices are a threat to this human-ness. In the first case, autism is the threat, and in the second case, biotechnology and self-modification are the threats -- human essentialism is invoked first to exclude a category of humans from humanity, and second to suggest that there is something sacred about human nature that demands a restriction on technologies that might make contemporary ideas about "what is human" fall to pieces.
Part of the reason I am generally supportive of the right to consensual prosthetic self-determination, and of efforts to further progress in biotechnology, is based on what I see as a tremendous need to break down the overall box that "humans" are supposed to be satisfied with. Humans are supposed to be satisfied with being typical humans -- we are not supposed to be satisfied with being autistic, just as we are not supposed to want to change ourselves in ways that threaten established (yet nebulously-defined) ideas about what "human nature" is.
In short, the "human nature" box exists as a direct threat to both the right to change and to the right to exist as an atypical being (since autistic and other disabled people are already functionally excluded from many formulations of what a "human" should be). Additionally, since it is likely that modification technologies will eventually become very easy to access and to apply, it is important to make sure that those technologies are not guided in the direction of keeping boxes intact, but in the direction of making them irrelevant and meaningless to all who encounter them. Morphological freedom, not naturalistic fallacy ought to be a guiding principle in envisioning society's future. And morphological freedom is in no way served by systematically denying that certain people do (or should) exist just because their attributes seem to place those people outside presently-delineated boxes.
Deconstructing The Box: Methodology and Action
But how can a person work toward helping to expose and break down boxes where they seem to be inordinately confining people and perpetuating over-limited interpretations of personhood? One potential way is, as Amanda Baggs has pointed out, contingent upon the willingness of people who are themselves atypical to live and to describe their lives in ways that ignore the box entirely. She writes:
If everyone who gives accounts of our life (publicly or privately) is busy letting fear of the box censor those accounts to only the parts acceptable to the box, then nobody facing similar experiences can learn from us, because our accounts of those experiences will be skewed if we mention them at all. While I can’t blame some people for force-fitting themselves to a box, it perpetuates the power of the box and makes others more likely to force-fit themselves as well, and becomes a self-perpetuating cycle that’s hard to break.
The "force-fitting" being referred to here is something that happens when people (who may be autistic, who may be atypical in some other way) are afraid to talk about the parts of their lives that don't conform to popular stereotypes about people "like them" -- that is, the things that don't fit in the box. And in many cases this isn't a matter of being "insecure" (as in the case of a man who won't admit he watches romantic comedies because he doesn't want people questioning his manhood), but a matter of not wanting to be constantly picked apart, scrutinized, or accused of malingering.
I honestly have no idea how I come across in most situations now. Part of me still can't believe I come across as anything but "normal", but I can't really disregard all those times as a youngster when I was told that I "must be trying to get attention" (even though I had no idea what I was doing, let alone that what I did could possibly affect the amount and type of attention I received). Or the whole thing that started when I was around thirteen or fourteen when people started accusing me of being on drugs (which I didn't always argue with, even though I wasn't on drugs, because I figured it was an improvement over "retard"). I don't know if I look like anyone's idea of "autistic", and I figure my presentation probably varies significantly from one environment to another, but in any case, I have certainly felt the pressure to "force-fit" at times. Even before I knew I was on the autistic spectrum (2) I remember feeling like I had to hide the things about me that weren't "consistent" with what I thought I was supposed to be.
The messages I received from my environment over time gradually led to a feeling that maybe I wasn't really human at all -- I was "supposed" to be all kinds of things that I just wasn't, and yet, there was a kind of internal consistency to how I was that I could not easily express or explain. By fourth grade I was seriously considering the idea that I'd actually been sent from outer space into the body of a human girl so that I could observe the people of Earth and take notes on them. This idea didn't last very long, as I soon realized there just wasn't any reasonable evidence that I was an alien, but the feelings of alienation and "otherness" remained. I tried to deny these feelings, not least in part because I knew there was a perception that anyone who lay outside established norms wanted to be there and was placing themselves there deliberately.
I told myself over and over again that I was just like everyone else, figuring that if I didn't, I was guilty of trying to be "special". Though I certainly wasn't about to give up my real interests or preferences (and though I couldn't exactly change my ability set to fit a more standard profile), I did start questioning myself constantly, and I was actively afraid that my interests and ability manifestations represented some kind of subconscious desire to distinguish myself and in doing so inconvenience everyone around me. I was terrified for years that I was fundamentally bad and selfish. This fear did not come out of nowhere, but was rather prompted by many real incidents, such as when a girl in my tenth-grade math class actually grabbed a book I was reading away from me ("The Fourth Dimension", by Rudy Rucker) and threw it across the room, while telling me that I shouldn't reading something so boring and stupid and indicating that I was somehow "showing off". Even though on one level I knew this girl was completely mistaken, I couldn't help but fear that she might be right -- that maybe she knew something I didn't.
But over time I came to realize that that was part of the box as well -- the assumption that everyone is, or should be, fundamentally the same, and that differences don't actually exist. The idea that differences don't exist is just as dangerous as the idea that some people are so different that they don't deserve to be thought of as people at all, which is why I don't have any patience with people who try to claim that (for instance) people who identify as autistic, or who have unpopular interests, or atypical ability sets are placing themselves in a box. The box is not the set of variables and constrains that delineate (if fuzzily at times) the boundaries of an individual, but the forceful and irrational imposition of particular constraints on ideas of how an individual should be from the outside.
In addition to living as if there are no boxes whenever possible, people can also help defuse the influence of the box through conscious and deliberate reduction of cognitive biases of the sort that influence heuristics. Heuristics are only as good as their ability to provide accurate information about reality, so it is important that people applying those heuristics develop the capacity to notice when they fail. Additionally, it is important to learn to avoid mistaking an heuristic for a fact about reality.
The problem is that when looking at reality, sometimes preconceptions get in the way of being able to recognize inappropriate heuristics. The analogy about Purples and lemon-jugglers I included at the beginning of this article was deliberately written to avoid (at least to some extent) triggering people's preconceived ideas about any particular known "condition" or state of being, in addition to preconceived ideas about the presence or absence of particular ability sets. I wanted to demonstrate that a lot of what probably passes for "common sense" when it comes to evaluating an atypical person's quality of life, character, and even personhood is actually quite frequently informed by prejudice and bias.
Perhaps when it comes to making decisions that could impact the way a person is treated, a place needs to be made for "specific, contextualized knowledge" (3). Not for irrationality, and certainly not for superstition, or for wishful or magical thinking -- but for the sort of data you get from knowing a person as opposed to just reading charts and graphs and articles about a kind of person. The data for those charts and graphs needs to come from somewhere, after all, and it has become abundantly clear to me that many of the models used to evaluate atypical (autistic, disabled, differently-configured, etc.) people are needlessly limited by boxes that should never have existed in the first place.
What needs to be acknowledged in the end is that personhood is far more heterogeneous than it might initially appear to be. It's not that people who don't fit standard patterns are alien-like or "other" at all -- it's that the standard patterns themselves are too flawed and limited to encompass the tremendous and vibrant variety of personhood that actually exists.
(1) Certainly, being able to form and maintain friendships is important, but there is nothing about being autistic that precludes friendship -- friendship requires at least two people who enjoy each other's company. And while autistics may have more difficulty than average finding people to relate to, this doesn't mean that no such people exist, or that because someone is observed to have difficulty with "age-appropriate peer relationships" in early childhood that they will never be able to make friends with anyone. It also doesn't mean that someone ceases to be autistic on the day they make their first friend, any more than it means that a girl ceases to be female when she gets an engineering degree.
(2) I use the term "autistic spectrum" not to imply something linear, with "high functioning" at one end and "low functioning" at the other, but as a useful term for expressing the heterogeneity seen in the autistic population. We have enough in common to share a particular designation, but we're all different "shades" (so to speak) within that designation.
(3) I borrowed the phrase "specific, contextualized knowledge" from a paper by Rob Breton and Lindsey McMaster, entitled Dissing the Age of MOO: Initiatives, Alternatives, and Rationality in which the authors write:
[The Buffy-Initiative Alliance] fails because she is integrated or integrates herself into the underworld’s core of assumptions: meaning, ironically, a refusal to de-humanize or alienate. She depends on specific, contextualized knowledge. Whereas Buffy is interested in questions of demon motivation, asking, “What do they want? Why are they here? Sacrifices, treasures, or did they just get rampagy?”, the Initiative is indifferent to questions which would thus lend consciousness to the monsters, positing that the creatures are “not sentient, just destructive” (“The I in Team”). Where the Initiative looks for empirical and tested facts, Buffy looks for factors, variables; her sense of herself and of monsters is suffused with personal motivations and individual desires, and indeed, her victories over adversaries are as much victories of personality and wit as of physical force."