Will the Real Human Please Stand Up

I started writing this last week, right after the ninth episode of Glee, entitled “Wheels,” aired. And the strange thing is that I started out with positive things to say, but as I continued to write, and delved more deeply into the episode, (and watched it several times online), I uncovered more that was negative. And being frustrated with what I had written thus far, I set it aside for several days.

I considered highlighting the contrast between the good and the bad, so it was with some surprise that I read Sarah’s recent blog post entitled “This Week’s Glee: The Good, Bad, and Horrific.” I’m happy to report that, while I have some similar things to say as Sarah, my observations complement rather than mirror hers.

To continue on the theme of good versus bad, I’m impressed by the way some of the characters seem to be developing. I wasn’t so disheartened by the fact that most of them started out as stereotyped caricatures. While this may seem reflective of bigotry – when people are different, those differences come to the fore, and they’re seen as what they are, not who they are, whereas people who don’t deviate from the standard are seen as a blank slate upon which their personalities are written – I don't think such criticisms are completely fair. I can think of at least three other television shows whose characters began as superficial “types,” but who later uncovered layers of depth and humanity so that who they were eventually overshadowed what they were.

Perhaps the most blatant example, with clear parallels to Glee, would be The Facts of Life, where you originally had “The Spoiled Rich Girl,” “The Fat Girl,” and “The Token Black Girl,” along with several others who were dropped after the first season. Later, they added “The Tough Tomboy.” But towards the end, they were none of those things to the audience; they were just Blair, and Natalie, and Tootie, and Jo, equal in their humanity, but distinct in their personalities, (with only occasional reminders that the writers weren’t completely willing to abandon those original types).

In “Buffy the Vampire Slayer,” the title character’s very name evokes an image of a self-absorbed high school girl, preoccupied with popularity, fashion, gossiping, and boys, who hangs out at the mall. But in a brilliant juxtaposition, suggesting a mindfulness on the part of those who created the character of the boxes that people are put into, that girl also happened to be the One True Slayer, in charge of protecting the world. Through the evolution of her character over the seasons, Buffy beautifully illustrates the tendency for an artist’s creations to seemingly come to life, to make their own decisions and act of their own accord, so that the artist becomes like the rest of us: an observer. I’m not sure that even the writers and producers could have foreseen how far removed Buffy eventually became from the Vapid Schoolgirl, (she never lost her fashion sense, though!)

Archie Bunker was originally conceived as a personification of everything that is hateful and small-minded in people – a role we often project onto others, but which I don’t believe really exists. He evolved into a more ambiguous character, who was sometimes sensitive and generous, whose inherent humanity could no longer be denied. He became one of the best loved television characters of all time, not in spite of his human flaws, but partly because of them.

While I still wouldn’t be able to tell you all the Glee characters’ names, I am starting to get to know who some of them are, particularly Kurt, the gay character. We have some insight into his motivations, and we’ve met his family, (his father). While ironically his character is one of the most stereotyped superficially, he’s becoming a real person – a likable one – where it counts.

Kurt can advocate for himself. He stands up during Glee rehearsal and proclaims that he wants to audition for the Wicked solo, (a song traditionally sung by a female). His antagonist, who tells him no, is a teacher – someone more powerful than himself. He’s upset by the decision, and is able to explain to his father why. With his father’s help, on the grounds that this is a discrimination issue, he successfully wins the opportunity to try out for the part. The decision to blow the audition, because he didn’t want his father to endure ridicule for having a gay son, was his and his alone.

I’m not about to second-guess the writers; I don't see them as being responsible for Kurt's decision. I believe this was Kurt’s choice. And in taking a flamboyant cartoon character and turning him into a real person who makes his own choices, they’ve done justice to gay people everywhere. (Isn't it true that the simplest solution for combating bigotry and prejudice against a group of people is getting to know someone who belongs to that group?)

Contrast that with Artie – and here’s where it goes horribly wrong. The dilemma at hand is that the school won’t pay for a special bus to accommodate him and his wheelchair, so that he can accompany his fellow Gleeks to sectionals. But when we first learn about this, it’s not through Artie; it’s through Mr. Schuester, the teacher, who is arguing in favor of the bus, against the school principal, who says no. It’s a discrimination issue, but that’s never directly addressed. When it’s resolved that the Gleeks will have to raise money through a bake sale – someone’s civil rights depend on the charity of others – it’s Mr. Schuester, not Artie, who counters the Gleeks’ resistance, even though Artie’s own peers are, presumably, not in a position of greater power than him. The closest he comes to advocating for himself is when he says, “it hurt my feelings a little.” But most of the time, he’s reduced to being gracious for the favor that’s bestowed upon him. Most astonishingly, throughout the entire show, nobody has bothered to ask Artie what he actually wants.

Kurt is empowered, and speaks for himself. Artie needs someone else to fight his battles for him. He exists only as a personification of what other people believe is worth defending, not a person with desires and rights of his own. This would be nothing more than an interesting observation except for the fact that it’s one of the boxes into which real people with disabilities are commonly forced.

To be fair, they didn’t get it totally wrong. There’s an interesting exercise in which the Gleeks are compelled to spend three hours a day in wheelchairs, one presumes to get an idea of the barriers most wheelchair users face, if not actual insight into the disability experience. In the end, Artie himself decides he’d rather use the money they raised to build ramps in the school instead of hiring a bus.

But the whole thing, even the not-so-bad parts, has the tone of non-disabled people lecturing non-disabled people about what it means to be disabled.

Towards the end of the episode, there’s a romantic scene between Artie and Tina, the Asian girl. They’re on a date, racing around in wheelchairs, having a great time, and then she kisses him. She gives him this implausible story about how she’s been faking her stutter since the 6th grade, in order to keep people away. (Voila! Instead of a stutterer, she’s now the Shy Asian Girl – did viewers complain that portraying a stutterer was too much like mockery?) He evidently has been fooled as well, even though she rarely actually stutters when she talks during the show. When she asks him if he understands, he says “No, I don’t….I would never try to push people away, because being in a chair kinda does that for you….I thought we had something really important in common.” He rejects her. Their happiness together, we’re led to believe, was based on her being a non-stuttering stutterer. (Was this a bizarre way of trying to promote a message that it’s wrong to pretend to be someone other than yourself?) When she says, “I’m sorry,” he says, “I am too. I’m sorry now you get to be normal, and I’m gonna be stuck in this chair the rest of my life, and that’s not something I can fake.”

It struck me as an ableist thing to say, hinting at the notion that what people with disabilities want most in the whole wide world is to be like non-disabled people. (And if we could just cure all the disabled people, the problem of disability would disappear, which is a little like saying let’s end homophobia by curing all the homosexuals).

Of course, just as gay people can be homophobic, Artie could be ableist. But I don’t believe that. I don’t believe that Artie is a real person acting of his own accord. When he speaks, we are hearing the writers’ and producers’ words. And it’s no small coincidence that, despite the fact that his character has been given a major story line, (surrounded by one is more like it), he is one of the least developed of all the Glee characters – still just an object. All we know about him is that his father drives him around, and his disability is the result of a car accident he and his mother had been involved in.

It's stunningly, breathtakingly evident that getting it so right with respect to one oppressed minority does not automatically confer the ability to broadly apply such progressive thinking. One wonders why.

I suspect that what’s missing here is something that all the progressive thinking, and good intentions, and sensitivity in the world could never take the place of, and that’s representation.

It makes sense that they would get the gay character right. Members of the Gay Community hold positions of power within the field of arts and entertainment. I’m sure the gay perspective is well represented within the Glee creative team. On the other hand, out of all the minorities characterized by Glee, if I had to choose one as probably being the least represented behind the scenes, it would be people with disabilities. This is not a criticism of Glee per se, but of the general state of affairs.

In fact, the actor who plays Artie is able-bodied in real life. (From the Fox.com/glee website: “Kevin McHale, who stars as Artie on Glee, shares how he has gotten really good at not moving his legs. Read the article at PopEater.com”)

Coincidently, in an online discussion, a friend of mine recently talked about how it's been said that the Jews control Hollywood. I suggest that what looks like control to an anti-Semite is actually just representation. I imagine that, to a homophobe, it’s the Gays who control Hollywood, and they definitely control Glee.

In another bizarre scene, Sue, the cheerleader coach, visits her older sister with Down Syndrome. The sister is living in a home, and clues, (“I should visit more often,” says Sue; the sister is a secret that none of the other characters know about), suggest that she never leaves that home. Through the light in Sue’s eyes, and the obvious joy she takes in interacting with her sister, we’re led to believe that the sister is deeply loved. Perhaps further testament that people with disabilities are poorly represented here is the fact that nobody pointed out the incongruity of locking up a beloved family member in a home, and never even taking them out for a ride, (Sue reads her a book). And can someone please tell me – is there something about the condition that leaves older people with Down Syndrome bedridden? And shouldn’t we expect a sibling with Down Syndrome to be younger?

I don’t want to sound too down on the show. Overall, I still like it. While I think they could learn a thing or two, I don’t fault or judge Glee’s writers for being biased. Some bias is normal and human – I’m sure I have mine. And it’s clear that they’re at least trying. If there’s a silver lining to this, it’s the fact that accurate portrayal – and indeed true equality in general – isn’t achieved through the eradication of bias, or even through understanding necessarily, but through representation and inclusion – a more practical and much easier way.

I’m not being cynical when I speculate on the make-up of Glee’s creative staff; I’m being realistic. And whether I’m accurate or not, this is a larger issue with universal ramifications.

I don’t know what will become of Glee, but I’m hopeful.

A Message From an Evolved Being

The more things change, the more they stay the same.

I recently watched this video.

“Gag me.”

That’s the comment I wrote on the Facebook page where the person posted this video.

What more could I have written?

Someone posted another comment, asking me why I wrote that.

I responded that, as an Autistic person, I couldn’t begin to explain all the things that were wrong with the video. (Actually, as an Autistic person, I have to struggle with translating my thoughts into words).

Then, another query came as a private email.

So I made a focused attempt, and here’s what I wrote:

It promotes a "spiritual class system." You have "evolved souls" and "less evolved souls." Same garbage, but with a New-Age twist.

It exploits Autistic people to promote an agenda, by portraying us in ways that most of us would never portray ourselves.

It makes us objects of other people's projections. Either we are sub-human, or super-human, but the result is the same: they don't see us for who we are. We're objects.

It promotes the stereotype that disabled people are Angelic Beings sent by God. That we must be extraordinarily strong to endure this "suffering," or that we're here to teach others tolerance, pure love, etc.

It negates and ignores the multitude and breadth of information, on the internet and elsewhere, by Autistics, about Autistics. It says that what we are saying about ourselves, and what we want for ourselves is not important enough for you to consider.

It erases us. It's no different than saying we are a scourge that needs to be eradicated.

It forces us into a mold, based on your fantasies, not on reality.

It takes something which should be simple – our equality – and overlays it with an elaborate and fantastical paradigm. That paradigm promotes inequality, but in a confusing, subtle, and backhanded way, and disguises it as spirituality.

I don’t know who the speaker in the video was. Perhaps the message was far-removed from the original teaching that inspired it. In fact, I was surprised at first by how positive it sounded. The speaker said, “Maybe they’re not flawed, but different.” It was mostly after that point that it veered off on a very wrong track.

Which highlights the reason why I stopped listening to stuff like this many years ago, or seeking outside of myself for spiritual truth. I consider myself a spiritual person – maybe even a “New-Agey” person – but I've learned that spiritual truth is simple and accessible. It's not this mystery that's hidden on a mountaintop somewhere, and it's not this esoteric knowledge that only a few, very advanced "teachers" are privy to. Whoever or whatever "Abraham" is, I don't need it, and I certainly don't need other people's interpretations, perturbations, or elaborations on Abraham's teachings, because that takes us away from the simple truth.

Unfortunately, it does seem as though the further removed you get from the original source, the more perverse the rationalizations become. One person commented:

"I am sorry Charles you have not had an experience of such total acceptance yet. Just hang in there the Universe will send you someone who can appreciate and understand you exactly as you are."

How about simple acceptance? Am I allowed to talk about equal rights in employment and housing, or is that too mundane? Am I allowed to speak for myself? Am I allowed to speak at all?

Is it too much to ask that people like me be seen as an equals?

(By the way, the video, and the written material accompanying it, specifically mention autistic children, but never mention autistic adults, so evidently we don’t exist in the Abraham paradigm either).

If I had surrounded my comment with hearts and swirlies perhaps it would have been better received. Which reminds me of something else. Angelic Beings sent by God are not supposed to get angry or disruptive. They’re not supposed to point out ugly truths. If they do, they’re “misguided.” They should just go back into their corners and be enigmatic, and let everyone else just “sense” their “power” and their “true message.” How “evolved” those observers must be, that they can “tune-in” to this.

My comment was deleted, along with the video itself, and everyone else’s comments. Then the video magically reappeared, along with several “thumbs up” votes by different Facebook members, and lots of gushing, but non-specific comments praising the video.

Evidently, “Gag me” wasn’t far from the truth.

Science vs. Politics

I once attended a fascinating lecture at the LGBT Community Center in Manhattan. I don’t remember the title, or even the main focus, but it touched on subjects such as eugenics, and how we define our community. What struck me was that I was hearing new things being said about the gay community that were also deeply relevant to the autistic community.

A practical understanding I came away with was that, although it may seem natural to equate the two, especially in the context of homosexuality or autism, “medicalizing” and “pathologizing” are not the same thing. Actually, to medicalize a people means to dehumanize them by reducing them to a rigidly defined medical (or scientific) category, not necessarily a disease. The two concepts are related, though: medicalizing always precedes pathologizing.

The scientific research of Dr. Simon LeVay, who isolated brain differences in gay men as compared to straight men, was discussed. Although the media made a big deal of this, and indeed the gay community saw it as a breakthrough, and felt validated in their defense of “I was born this way so it’s not my fault,” (that’s a whole other discussion), it was suggested that perhaps this should not be seen entirely as progress.

I’ve stated in the past that I don’t ascribe to the term, “GLBT.” I find it divisive, for one thing. The term “gay” originally referred to the entire community. Decades ago, the defining lines were not as sharp between homosexual men, lesbians, bisexuals, (for some reason, as far as the GLBT community is concerned, it still doesn’t matter if you’re a male or female bisexual), and transgender individuals, (or is it transsexual? According to some, the two terms, “transgender” and “transsexual” connote different things, thus further dividing up our community. And of course, you’re either “MTF” or “FTM” and “pre-op,” “post-op,” or “non-op”).

From a scientific or medical viewpoint, there may be valid reasons for distinguishing between the different groups and sub-groups that fall under the banner of “GLBT,” (for instance, healthcare needs may vary), but not so much from a socio-political viewpoint, and if anything, “GLBT” is a socio-political term.

What’s interesting is that people see it as an inclusive term. Some versions of the acronym add “I” for “intersexed,” and “Q” for “questioning.” It’s believed that by adding these two categories, those people are being included as well. But you wouldn’t need to include them this way if they hadn’t been excluded in the first place, (this goes for “L,” “B,” and “T,” also). And lopping them on as separate categories doesn’t accomplish inclusion so much as highlight differences.

I also find it interesting that the order in which the letters appear in the acronym seems to suggest a power hierarchy, (perhaps confirming once again that separate but equal is rarely the reality). Is it a coincidence that “T” falls after “GLB” while “I” and “Q” get even lower billing or none at all? Is it an accident that some people say “GLBT” while others say “LGBT?”

I held this opinion long before attending the above-mentioned lecture, but on that day, a new understanding began to dawn on me: not only does scientific research into homosexuality tend to medicalize us, but using the term “GLBT” comes close to doing the same thing, because of the way it reduces us to more strictly defined categories.

At that lecture, a woman – who clearly identified as a member of the gay community, and was not only accepted as such but seen as a leader – described herself as primarily attracted to trans men. She didn’t share this observation, but it occurred to me that “GLBT” personally failed her, because none of the categories applied to her. And she’s not “I” or “Q” either, so even ameliorative efforts have failed her.

You can define a medical category, but you can’t define a people, nor should you want to. And that’s why “GLBT” has failed, and will always fail no matter how many additional letters you add.

It’s clear that there have been problems with inclusion in the past, and that adopting the term “GLBT” was an attempt to solve those problems. It’s also clear that “lesbian,” “bi,” and “trans” are valid identities, (even though they resemble medical categories more so than “gay” does). But a truly inclusive community should not be named as a conglomeration of parts. And a community of people should not be named descriptively.

It’s not too late to re-appropriate “gay.” As it was originally coined, it was an umbrella term that didn’t define us, restrict us, contain us, or reduce us, and although it had a meaning long before it was appropriated, it didn’t presume to describe us either. It didn’t mean male or female, full-time or part-time, practicing or not, how you’re born, or what your sexual practices were. It simply named the collective of who we were. That’s why to me we will always be the Gay Community, and using that terminology is my way of honoring those men and women who shaped our gay history, and who appropriated and used the word in an expansive and open-ended way which we’ve since departed from.

(“Queer” is OK as an umbrella term, but it’s descriptive in a relevant way, has negative connotations that some people object to, and none of the historical significance. On a side note, it’s fascinating that while there are many examples of communities taking a negative label and redefining it to mean something positive – usually not without controversy, and we call that “appropriation” also – the once wholly positive term “gay” is now being used by young people to connote something negative, as in, “That’s so gay!” I don’t think we have a name for this brand-new phenomenon).

While the trend toward medicalizing us comes from within the gay community itself, and historically, trans and bisexual people have had to fight within the gay community for their place, to be understood, and to have their interests considered and their rights fought for equally, (this is probably also true of gay women, although my bias and/or age have prevented me from witnessing it), paradoxically the gay community is also very welcoming. There is no committee that decides whether an individual qualifies for inclusion or not. You don’t have to meet any requirements, and there certainly are no “diagnostic criteria” or a long list of “symptoms” to be completely or partially met. One needs only to sincerely identify as part of the community in order to be accepted as such. In fact, the terms “gay-identified,” “straight-identified,” etc., have come into usage, so we do recognize, even linguistically, that these are self-determined identities, not medical categories.

The medical community is in agreement with this. When I signed on as an uninfected participant in an experimental AIDS vaccine trial, they were not concerned with whether I called myself “gay” or not. As befits a medical context, I was assigned to the unambiguous medical category of “MSM,” (men who have sex with men), which clearly means something different from “gay.” For example, the category includes straight-identified men who have sex with men, (yes, they do exist), but it does not include gay-identified men who are celibate. By not medicalizing “gay,” they were respectful of the gay community.

Astute readers will probably have guessed that I intend to draw parallels to the autistic community. But before I do, I would like to include one other example of what I’m talking about here.

Early in her career, Canadian-born pop star, Shania Twain, professed a Native American heritage. When it was discovered that she was not actually of Native blood, she was accused of fraud. It turns out that the man who married her mother and legally adopted her, the man she knew as her father, was full-blooded Ojibway. His tribe accepted her and raised her as one of their own, and as far as they’re concerned, she is Native. Furthermore, The First Americans in the Arts, a non-profit organization created "to recognize, honor and promote American Indian participation in the powerful arena of the entertainment industry,” has also acknowledged her Native American identity, and presented her with an award for Outstanding Musical Achievement. Shania, whose name means “I’m on my way” in Native language, described the experience of having her identity questioned: "I feel like I've been this tree with good sturdy roots for 30 years, then all of a sudden someone comes along and is trying to cut me down, cut a part of me off."

Scientifically speaking, Shania Twain is not Native American, because she does not conform to a medical definition. But science does not hold jurisdiction over this matter. How an individual identifies is a very strong indicator of who they are, and it is the community itself that confirms that identity.

At least as early as 1999, it’s been suggested that the same standard – self-identification and peer validation – should apply to the autistic community. [1]

“Autism” has been called an umbrella term. In the past, I was uncomfortable with that because it seemed that people were using it as a way to underscore differences between “high-functioning” and “low-functioning” autistics. I now realize that whatever the intent, the effect is that it gathers all of us, in our unlimited variety, together under one banner.

“Autism,” is a coined word that did not exist before it was applied to a group of people, and its parameters are whatever they are defined to be. Its meaning has evolved over the years, making it an open-ended term. The word today is still not clearly defined. In fact, a highly-respected autistic scientist recently made an intriguing statement: “We don’t know what autism is.”

Well actually, we may not have a medical definition for it, but with all due respect, we do know what autism is. How else would we be able to call ourselves “autistic” and how else would we be able to recognize our own kind? How else would we be able to meaningfully use phrases like “autistic community” or “autistic advocacy?”

“Autism” refers to a real and identifiable group of people. I respectfully suggest that science does not know what autism is, (despite years of research), and perhaps it never will, and perhaps that’s as it should be. I suggest that, from its inception, “autism” has never been a medical category, but rather a socio-political one, albeit externally imposed, (unlike “gay”).

“Autism” is not a totally arbitrary term. It’s derived from the Greek word “auto,” which means “self.” In the original sense, it is of questionable relevance today, as apparently it’s based on a biased observation. However, the association is not unfortunate. As individuals and as a community, the precepts of self-advocacy, self-identification, self-determination, and self-realization are paramount to us.

Many of us within the Autistic Community are appropriating the word as our own, and using it in an expansive way rather than the narrow and restrictive way it has been imposed upon us. From here on, when referring to our people, I shall capitalize the words “Autism,” and “Autistic” to denote this. (Likewise, I shall capitalize “Gay” to signify my uncommon usage of that word).

There’s no indication that freeing autism from the tyranny of a controlling medical establishment which not only claims jurisdiction over who can call themselves “autistic,” but has medicalized and even pathologized us, would result in casual application of the term. After all, anyone can self-identify as Gay, but that isn’t done casually.

The urge to know oneself is strong, and although self-identification is often a process, and sometimes mistakes are made along the way, people rarely get it wrong once they finally settle on an identity.

To quote Maya Angelou: “When people tell you who they are, believe them.”

I’m Gay because I say I am, and the Gay Community affirms that. I am Autistic because I say I am, and the Autistic Community affirms that.

We are a people, not a medical category. And that applies whether we’re talking about the Autistic Community, the Gay Community, or any other people. Science, which deals rigorously, which narrows and contracts, is poorly suited to this arena.

What does it mean to be Autistic? What does it mean to be Gay? The answers are infinite.




[1] Martijn Dekker's groundbreaking work, "On Our Own Terms: Emerging Autistic Culture," is no longer hosted on the internet, as far as I can tell.