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.
