Disability and Illness in Harry Potter

As a Ravenclaw--both in life and on Pottermore--I got early access to the second half of The Goblet of Fire on JK Rowling's Pottermore website. This section didn't have much in the way of groundbreaking new information, probably because of all the extras we got surrounding the Quidditch World Cup. However, at the very end it had a piece dedicated to Rowling's view on disability and illness in the books. 

I'm not going to quote as I don't want to spoil people, but the basic summary is that wixen* are immune to Muggle accidents and illnesses, but on the flip side, Muggles are protected from magical ailments and creatures. Some people have expressed dismay at what she says here, but I cannot say that it surprises me overall. I might have been more satisfied if she had said that Muggles owe their safety to the lack of magic in their blood--implying that magical beasts couldn’t attack them rather than the Statue of Secrecy keeps said beasts away from them. This is, after all, basically her explanation for why a wizard can't be felled by the flu--the magic in their blood makes them genetically immune. 

In a way, this solves the fundamental question of why involved in analyzing the relation between magic, illness, and disability. Why, if magic exists, don't wixen cure AIDS, cancer, or swine flu? The possibility exists, seeing as the Fat Friar got in trouble for treating Muggle plague victims by poking them with a stick (a fact revealed on Pottermore). The answer to this question, though, goes back to the basics of Muggle-wixen relations, and the misunderstandings on the wizarding side. 

It's impossible to know how much truth there is behind the history canon gives us for the Statue of Secrecy, but at this point that doesn't matter. Wizards believe that Muggles will persecute them if they reveal themselves, and they believe that keeping themselves hidden protects their Muggle brethren from magical creatures and illnesses. They see this as a win-win situation. Additionally, it has been in effect for 325 years. By this point, the majority of wizards probably don't know about/understand the debilitating effects some illness and disabilities can have. Undoubtably there are Muggleborns who do, and who would seek to use magic to treat friends and family members at the least. They would be limited, however, by three main factors:

1. Muggles and wixen split so long ago that they would probably have to invent new magic. Magical healing is adapted for the wizarding physique and Muggle diseases have adapted significantly since the Fat Friar's day. 

2. They would have to do this with no support--and indeed they would be risking arrest. I don't imagine there's a loophole in one of Arthur Weasley's laws that allows for experimentation on family members, much less the greater Muggle population. 

3. A factor that people often ignore when wondering "why don't Muggleborns x?" is that all Muggleborns have been indoctrinated in wizarding society since the age of eleven. Every witch or wizard who helps them adapt to their new world believes--to one degree or another--in the basic underpinnings of the Statute. It would be easy to assume that these people are right about the world at large, even if the child has an incredibly accepting, supportive family, especially if someone close to them--say a sibling--reacts more negatively than their parents. 

Basically, to have a Muggleborn take the helm in curing Muggle diseases they'd have to feel strongly enough about it to endanger themselves, this world of people that took them in at the age of eleven, and probably the people they are attempting to help. They'd have to be adept at adapting spells, understand anatomy, and research--and all of this on their own, in secret. I'm not saying these people don't exist, haven't existed, or won't exist, but chances are up to the time of canon their efforts would have been shut down before an effect was seen. I imagine that up until canon it may have been easy to adapt a potion or two for ailing relatives, but to think well, they're doing all right for themselves, really about society as a whole.

However, I don't think that attitude will last post-canon, and that's what I love about the Harry Potter World. Hermione Granger is an example of a Muggleborn who definitely got wrapped up in the Wizarding World and its issues. In many ways she's an example of that indoctrinated Muggleborn above. However, I definitely see her social justice tendencies shifting from House Elf Liberation to Muggle Support, perhaps with the help of her father-in-law. I think her experience with SPEW is a stepping stone on the road to learning to work with the affected group, and I see her and others slowly working with the Muggle government to reveal themselves to the Ministry of Health--for instance--and blend magic with science. (If this can be done. The Friar's example suggests it can, but there is the possibility that Muggle bodies and magic just don't mix, especially if someone has no magical genes.) I firmly believe that as the Muggle world enters the information age the gap between wixen and Muggles will close. (I have a deeply held belief/headcanon that Arthur and George Weasley will adapt or create magical artifacts that allow wixen to use the internet.) I also think the post-canon era is the time when it becomes most impossible for wixen to remain willfully ignorant of Muggle crises.

Just imagine the Muggleborn wixen who were barred from going to Hogwarts on September 1st, 1997, a time when their country--their world--was mourning two of the most influential advocates for social justice ever. Forget our more cynical understanding of Mother Teresa and think about Princess Diana's work to bring AIDS awareness to the world. These events--the deaths and kept from Hogwarts--would be tied together in the minds of these students, and I bet you anything they'd be warriors for justice for everyone. And for once the Wizarding World isn't going to silence them. Underaged kids who have spent the summer reading about Remus Lupin's noblity. Battle of Hogwarts veterans suffering from PTSD and other ailments not usually considered in their world, on top of numerous magic-induced disabilities. Hermione freaking Granger back for her eighth year and still ready for a fight, any fight. These are not people who are willing to let senseless deaths happen under their noses. However, they're also not going to start charming Muggles willy-nilly or take over the ministry because that's what he did. They're going to make change, but they're going to do it right this time. Everyone will have a voice, purebloods, Muggleborns, and hopefully even Muggles. 

Unfortunately, changes like this take time. Muggle scientists haven't cured cancer or AIDS** yet, and they've been working on it in the open for decades. I believe that there have been numerous new research labs opened by the Ministry dealing with issues of social justice, one of these being the Office for Augmentation and Creation of Muggle Medicine. There are scientists on staff, mostly Squibs and relatives of Muggleborns for the time being. (It's next to the Office for Promoting the Understanding of Magical Genetics.) They're part of an initiative founded on the premise that blending magic and technology will help level the playing field between wixen and Muggles, eventually opening the door for reintegration. 

And yet, in the midst of all of this advancement, one group will remain alienated: those of us who have been holding onto the belief that, unlike many fantasy worlds, Hogwarts could provide a place for us—those of us with disabilities and chronic illness.

I see how Rowling's justification for her treatment of disability and illness makes sense from the perspective of a physically able storyteller.*** By insinuating that wixen genetics protect them from Muggle ailments, she lets them off the ethical hook. In a way, Rowling is off the ethical hook--even in this world she created no wave of a wand could have cured her mother's MS.  Rowling's wixen aren't holding out on Muggles. They don't have a cure for cancer that they're not sharing. The reader can smile at the idea of a hospital hidden away in 1990s London without feeling tremendously guilty. However, that doesn't mean it's not still problematic. Making wizards immune to so-called Muggle illness and disability is a fundamental example of an ableist wish-fulfillment. Wouldn't it be great if there were a world where people couldn't contract the multitude of illnesses and disabilities faced in contemporary society? 

The trouble is, this erasure further alienates those of us whose disabilities weren't caused by magic. Rowling's solution to the so-called problem of disability relies on the ableist assumption that it's better to eliminate disability than to treat it--to live with it. It’s a curious stance to take, because it has broader implications in her work. If it is better not to have “Muggle” disabilities and illnesses, if wixen are stronger because of it, aren’t they better off with no disabilities? Shouldn’t Remus have spent his time continuing his parents for a cure, rather than using the Wolfsbane to mitigate the worst of his symptoms and having a life, the way those of us with disability and illness in the real world attempt to do? I think it’s safe to assume Rowling did not mean for this addition to Pottermore to alter the meaning behind the werewolf metaphor—but it does.

If, rather than exoticizing dragon pox and erasing cerebral palsy, Rowling had admitted that wixen--or even just half-bloods and Muggleborns--are susceptible to mundane disabilities and illness, which they then treat with magic, she would have reinforced the idea that treatment can allow one to live with disability or illness****. And perhaps some of these disabilities and illnesses can be cured, the same way some magical ones can. Genetics could then come into play, in that the magic involved in these treatment/cures could not be adapted for use on Muggles without breaking the Statute of Secrecy. With that established, the possibilities for expanding the—probably misguided—wixen viewpoint on disability increase Wixen believe themselves to be strong, so perhaps the disabled face the same stigma as werewolves. Some chronic illnesses are a mark of the distorted nature of Pureblood family trees, the way Metamorphamagery is. I'm not saying that Rowling should have integrated a person who is HIV+ for every werewolf. I just wish she hadn't erased disabilities completely. One asthmatic witch, one Hogwarts student replacing their magic prosthetic with a Muggle one over the holidays, I would be happy with any example of real disabilities and illnesses integrated with--rather than erased by--their exotic, metaphorical counterparts. This would not only have made sense in the corrupt and isolationist world, it would have been yet another change the reader could imagine being made post-canon. The series is so throughly grounded in Britain of the 1990s that these changes are not only totally plausible, they give hope.*****

Rather than believing our owls have gone astray and imagining ourselves attending Hogwarts with the proper accommodations,****** we are forced to accept that there is no magical blood in our veins. At this minute, some witch might be creating a potion that could replace the enzyme I'm missing in my collagen, or just one that will target and treat the chronic pain in my left hip, but even if that were true, it wouldn't mean more to me than if a scientist in Canadian were doing the same thing. 

After all, at least I could be Canadian, if I really wanted to be.

Addendum: She does phrase all this as a wizard "could cure" most illnesses, implying that perhaps there are wixen who are disabled until they join the Wizarding world, but the further assertion that they cannot be felled by things of a "mundane" nature suggests some amount of exclusionary immunity, and all of it at leasts advocates for cure rather than adaptation, unless such an illness/disability is caused by magic. Basically, get your leg blasted off by a Skrewt, you're good, but get bitten by a shark, you're a Muggle. 

*A gender-inclusive term for witches and wizards.

**With possible exceptions.

***I am confining this discussion to the physical because Rowling has admitted to having mental health issues, and because mental health in the Potter books is generally separated from physical health--with its own creature metaphor, the dementor.

****For what its worth, that's going to be my headcanon. Immunity is directly proportionate to the number of magical alleles. 

****I wish she'd done this even if it were a child who used a magical wheelchair because of a magical disability/illness.

****And for the reader in 2040 who wants to know why xx disease still hasn't been magically cured? Change is slow in magic, science, and government. That doesn't mean it won't come. To me, this allows more hope, not less.

The Success in Our Stars

Last Thursday, my friend Rachel joined me for the "midnight" (8:30) premiere of The Fault in Our Stars, cleverly dubbed "The Night Before Our Stars." I was explicitly nervous about the film, because Shailenne Woodley didn't look like the Hazel I'd imagined. I'm not usually picky about these things, particularly not in a superficial way, but the book describes Hazel as looking like early 2000s Natalie Portman, which is very specific. That combined with the fact that she got diagnosed with cancer at thirteen--something that would generally cause some growth stunting--made Shailenne seem too healthy for the part, to me. Then again, John Green continually said that they got the movie right, and I tend to have faith in him, at least in regards to this book.

Turns out, trusting in John Green is not a popular point-of-view on the internet these days. He's getting a lot of flack from bloggers for a comment made in praise of the film director about Hazel being the one to kiss Gus in the film. I have a lot of thoughts about the people complaining about this, but mostly I feel that everyone involved is missing an opportunity to discuss far more important things about this film.

Is it important to examine it from a feminist perspective, particularly because the book was written and the film directed by guys? Absolutely. But to me, and to a lot of other people, who kisses whom is not the important part about that scene. What impacted me was watching Hazel struggle up the staircases in the Anne Frank House*--one of which might as well be a ladder--with Anne's voice playing in the background. To some degree, seeing that on screen is important to me because I've been there. I dragged myself up those stairs, leaning on my cane, slowing down the old British tourists behind me. I found myself thinking If Anne could do what she did, I can do this. In a way, that's as much whistling in the dark as Augustus's parents' encouragements. My life is not comparable to Anne's anymore than broccoli affects the taste of chocolate. But the thought got me up the stairs, even though with every step I thought I wouldn't make it.

I was on my own that day. I didn't have encouragement from a nice Dutch lady, or a hot guy. Standing in a historical spot was my reward. But it paid off further Thursday night, sitting in that movie theater. For the first time, I watched a protagonist's physical struggle, and I didn't feel alienated the way I do whenever I watch Katniss running through jungle, or Harry Potter diving for a snitch. I didn't think I'd never survive that. I thought, Oh, I've done that.

I'm twenty-five. I've got connections to the disability world, and I know that people with disabilities and chronic illness can have adventures, fall in love, and be a part of the world, even if it means having to take machines with them to Amsterdam and wear oxygen while having sex. I didn't know that at sixteen, and maybe that's why I still have trouble believing it.

I don't particularly care whether the girl on oxygen kissed the boy with one leg first. I care that they kissed at all. I care that the hot love interest used a prosthetic leg (I do wish he'd been an actor who was an amputee, but it's a start.) I care that the girl's dad warned the boy that she might not be able to keep up, and he wasn't scared away. I care that these characters are that they're teenagers, and they're readers, and they're adventurous, and pretentious, and so many other things, on top of being visibly disabled. Meaning that teens (people) with disabilities and chronic illness can say "I can do that," about what they see on screen, instead of "I'd never be able to do that."

And, yes, my fave is problematic in other ways. No, this isn't the only YA novel ever to feature characters with disabilities and chronic illness (but I've read a bunch of them, and most don't balance it out nearly as well.) But I think it's important to talk about what it does right, too, because the book wasn't just successful because of who wrote it--at least not with me--it was successful because it reflected my reality in a way most media hadn't.

Basically, what's way more important than who initiated the kiss is that it happened at all.

*I am not Jewish. I have seen objections to the two non-Jews kissing in the Anne Frank House, but do not feel I can speak to this except to say that John worked with the Anne Frank Trust in creating this section. Not to say that it cannot be offensive to some people. Of course it can. But to me--a non-Jew who has been influenced by Anne's diary and the museum--it reads as hopeful.

Normal Representation: How One Casting Choice Can Make a Difference

I recently watched HBO's film The Normal Heart. Please note, this post has some spoilers.

I was wary about the film, because Ryan Murphy directed. In spite of my negative history with him, I really liked this film. It's no secret that I'm in love with Matt Bomer--there are four pictures of him on my bedroom Walls of Fandom. I also believe that the media should bring attention to AIDS whenever possible. It hasn't gone away because it's more treatable, and this generation needs to know how terrifying the height of the epidemic. The importance of awareness cannot be overstated. Around the world, people are still affected by the virus. Not everyone--indeed, not the majority--has access to medical treatment. In many, many cases the stigma shown in the film is still alive and well--if not worse, and with horrifying, violent consequences that are as bad, if not worse, than the virus itself.

But this film is not about the state of AIDS today. That's important to remember. It's about the beginning of the epidemic, in the time when those affected were (generally acknowledged to be) white, upper-to-middle-class men.

NB: I'm not here to discuss whether or not another film directed at this demographic is necessary, merely to discuss what the film does and why it does it.

The film reflects this reality. It has three female speaking roles, and one important scene that has three additional women in the background. There could have been more. There should have been more. Even in a film that is highlighting the homophobia behind the stigma against AIDS, the focus on  cis-males is bi-erasure. Not to mention the fact that in this period plenty of gay men were closeted, potentially infecting their unwitting wives and/or girlfriends. I'm not saying you have to spend a ton of screen time on a subplot, but mentioning that tragic angle would have been a way to add depth to the film while adding female roles.

Enough could-have-beens. Let's talk about what is: the third most important character in the film is a strong, intelligent, woman. She is not a love interest. She's a doctor. She's a fighter. She is not afraid to treat people with AIDS, the way the majority of healthcare providers in the film are. She understands that the virus is probably transmitted by sex, and while there is a touch of the problematic in her staunch advocacy of celibacy--repressed woman in a world of highly-sexual male characters--her reasoning is sound. All in all, we get more backstory for her than we do for the main character's love interest. That backstory that contracting polio as a child and the paralysis that resulted.

This woman, you see, is a wheelchair user.

I know, I know, a celibacy-toting wheelchair-user, but hey, sound reasoning! And she is arguably asexual, this is another layer of good representation!

Except...It could be better representation.

You see, this character, this female, disabled character, who talks about sex, and takes no crap from her patients, from the establishment, from the freaking TV-repair guy. This awesome, unique character...

...is played by Julia Roberts.

Julia Roberts is a great actor. However, before I knew anything about her role, I almost dismissed the film based on her casting. Having a former romantic comedy lead playing a token women in a film about gay men? It screamed Lifetime movie to me, not highly-intelligent film. I'm glad I was wrong, but even though I hope this film gets her an Emmy nomination my misunderstanding of the film's aim due to her involvement is only one reason why she should not have been cast. There is no reason the role needed to go to an able-bodied actor. I can come up with an argument for every argument an able-bodied person could come up with for this choice. Needing to cast a big name in the one major female role? Nearly ever role in the film is played by a name--Mark Ruffalo, Jim Parsons, Matt Bomer--These are actors that bring in both male and female viewers. Casting an unknown, or relative unknown, in this part wouldn't have hurt anything, and it could have provided an amazing opportunity for a disabled actor.  There are no other limitations that could have affected character's casting. She didn't even have to be a specific age. In a film set in 1981, anyone could have had polio as a child. That virus wasn't rare until 1967, and the last recorded case wasn't until 1979. An actress need only be old enough to be out of medical school. That's it. That's all. From what I've gathered, the disability itself was a choice made by the filmmakers. Maybe they made it after Roberts's casting, and that's their explanation. Nothing justifies it entirely.

The excuse that Hollywood--and, in fact, Ryan Murphy--constantly falls back on whenever able-bodied actors are cast in disabled roles is the need to show characters walking (or hearing, or seeing) in a dream sequence, a flashback, or what have you. When it's important to character arc, I get it. I'm not opposed to Kenneth Branagh playing FDR in Warm Springs, for instance. But this time, the excuse doesn't hold weight. And yet, I can pinpoint the place the filmmakers will point to if challenged. There's a scene--I almost want to call it "the scene" because I feel like I've seen it in every film that does this able-bodied-actor-disabled-character thing--where Roberts's character, Emma, reveals that she can walk with crutches, but she doesn't practice enough. Cue Ruffalo helping her "practice," her falling back into her wheelchair, etc. It's a negligible moment, really. An excuse to get the male and female leads touching, which is unnecessary at best, offensive at worst. Fine, it shows the physical weakness of an otherwise strong female, and in doing so highlights the parallel being made between polio and AIDS. But here's the thing--it could've been done by a disabled actor. I know plenty of people who use wheelchairs a majority of the time, but can use crutches. Hell, many of them--like Emma--could walk more, but are out of practice. They have other priorities. They choose to use wheels, and put their efforts toward fighting other battles, just like this character.

I'm not saying an able-bodied actor cannot play a disabled actor. In some cases, it's necessary (see above re: acquired disability.) And no doubt there's someone out there who wants to drag this argument down the slippery slope of, "well, should all the gay characters be played by gay actors?" And you know what? Ideally, yes. And no. One's sexuality shouldn't matter in casting, because sexuality is fluid, and the Kinsey scale exists. But the thing is, gay actors in Hollywood play gay characters. They play straight characters. In this film, gay actors play gay characters. Not that discrimination doesn't exist. Not that that casting is done perfectly, but I do not think we are in a place where Matt Bomer would have been considered too gay to play his role.* I do think that it's highly possible that no disabled actors were considered for this part. And there are disabled actors. There are plenty of them. And if people with disabilities who are aspiring to the become actors could turn on the TV and see themselves in roles like this, there might be more.

As I said, The Normal Heart is not about the state of HIV/AIDS in today's world. It's about a time when the virus was known as "gay cancer" or "Gay Related Immune Deficiency." Like other media about the era, The Normal Heart focuses on the white, cis-male gay community of New York. Unlike RENT, or even Angels in America, it makes no attempt to venture into the world of those who became HIV+ via shared needles, or anyone below the poverty line. There's a clear focus on the homophobia that kept policymakers from addressing the growing numbers of people infected with the virus, and the monied gay activists who were pushing back. Both sides, though, make their point by stating beliefs that heterosexuals cannot be infected, or had only been infected in Africa. Again, this provides a blatant example of white privilege, and bi-erasure, but it comes in the interest of making a bigger point--the privilege enjoyed by white upper-to-middle class males--even those who were gay--did not exempt them from this.

This point, I think, is made especially cleverly in the introduction of the second female character, a woman named Estelle. She comes to volunteer for the AIDS awareness movement after her best friend--her gay friend, who took her shopping and to Broadway--has died. In spite of the stereotype, his death is no joke, and her loss is not less because she is an "ally." Her introduction serves as a reminder that no one is safe from the virus--not the  gay best friends, not the closeted military men who vacation on Fire Island, no one.

The Normal Heart is not a film that does a lot of things that haven't been done before. What's important is that it's doing these things now--almost twenty years after RENT premiered on Broadway. It's bringing awareness to an issue that hasn't gone away, and the cast list is an attempt to draw in an audience who hasn't heard the message before. I get that. But Julia Roberts's target audience has likely heard the story. And I think that reaching a young, disabled audience is important in a time when people in the white, middle class world are "living with, living with, living with, not dying from disease" (to quote RENT), specifically this disease. Although the characters who contract AIDS in the film do not survive long, the filmmakers took care to show the way they became disabled in the interim. There are walkers, wheelchairs, and crutches, all of which highlight the connection to Emma's disability. And, yes, this is meant to remind the audience of the similarities between AIDS and polio; but not just in the way the diseases were treated by the government. The parallel also gives the audience a hint toward the future of AIDS in this demographic. As the films title-cards remind us, it takes place from 1981-1983, but it is airing in 2014, and the landscape HIV/AIDS has changed, but the virus has not gone away, no matter how much policymakers still wish it would.

People who are HIV+ in this day in age are becoming part of the chronically ill. Many identify as having a disability. Like Emma, they live with physical limitations that are worse some days than others. Thanks to medical professionals and  activists like those in this film, HIV/AIDS no longer brings a death sentence in the Western world, anymore than polio does. And so, like polio, the history of HIV/AIDS has a place in disability history. If nothing else, it provides historical justification for the overlap that often occurs between queer theory and disability studies in the academic world. But, in my opinion, it does much more than that. The fight beginning in this film is one that is still being fought by disabled and chronically ill people. A fight about healthcare, and access, and awareness. A fight against stigma, against shame, against guilt. A fight to be heard, to be loved, to be accepted. One that requires the kind of passion, and indefatigable strength that this movie promotes.

There are going to be people who dismiss A Normal Heart because most of the characters are upper-middle class, cis-, white men. The few nods to diversity include a smattering of female characters--one of whom is disabled--a couple characters who identify as Jewish, two who are visibly non-white, and some who become disabled. The big names on the cast list come from superhero movies and a TV show designed around hipster man-pain and first world problems (and I have to say, I liked Jim Parsons, and I despise The Big Bang Theory.) But, in a way, this lack of diversity is the point.

The "Normal" Heart. Usually, I dislike the word normal, but here I think it's used in a very specific way. Normal. Average. The target audience and the characters are "normal" in the contemporary sense. Sure, they love other men, or they're Jim Parsons-type geeks, but they're not many standard deviaitons away from the norm. It is not an ideal to be an outlier. The is targeted specifically to the privileged audience. It's not about eclectic, romantic starving artists whose culture--to a degree--celebrates the burn out. It's about men who have just begun to dream about having the lives and families of their straight counterparts, but will lose that chance. A generation of "everymen" wiped out in a viral war. Through the film, the characters come to realize that they, with their "normal" hearts--can love. They can speak up. They can fight. Just like anyone else. And if they don't, if they don't embrace their normality, but also their individuality, they will be on their way to becoming a chilling statistic  the government didn't want to acknowledge.

This is, in a way, where Julia Roberts's character Emma comes in. She's an outsider in this gay, white, privileged world, and at one point she accuses Ruffalo's character Ned of being afraid of her. Everyone, she says, is afraid of her. In the context of the film, this is perhaps true, not because of her or even disability in general, but because of what it represents. Her wheelchair, and the virus that preceded it, foreshadow the wheelchairs and walkers that in turn represent the physical toll that AIDS takes from its victims. In becoming sick, characters become like Emma, but this is not necessarily a bad thing. They may be physically weakened, but like her they must fight other battles. Felix focuses on his love for Ned. Others fight for awareness, or allow their friends to do so. In losing some of the physical vitality that defined these privileged men in the opening scenes of the film--oil soaked babes on Fire Island--they become less ideal everyman, more real everyman. They exist as individuals, they can love deeply, and they have expanded the definition of "normal" to include not just privileged, promiscuous healthy, men but also sick, passionate, frightened men and women for whom "heart" is far more important than "normal."

I keep thinking of the other example I've seen of GRID being featured in mainstream media. Grey's Anatomy did an episode several years ago (6x15 "The Time Warp") and in about fifteen minutes of screen-time managed to establish the parallels between a white, closeted man being ostracized by everyone, including doctors, and the show's characters, a white female and black male doctor. The three of them are united by their shared experience of isolation, and the doctors treat and comfort the man in his final days. Obviously, the film wants to say something similar about the connection borne of illness and oppression, but I think it did a better job at showing the way the isolated group starts breaking apart--attacking itself, as it were--than it did in showing that power can come from connection as well as from fighting. Yes, there is some suggestion of that through Ned's brother and Emma, but I think it could have been better.

Through enforcing this normal, everyman mentality, The Normal Heart serves to remind this generation that this disease, the one they have come to associate with drugs, and Africa, and poverty, and the occasional heath class scare tactic, affected their world. There's a blatant "there by the grace of God' theme, highlighted in the juxtaposition of characters who seem immune to the disease, for no discernible reason. AIDS does not discriminate, any more than the polio virus discriminated between households in the forties, no matter how much effort the housewives put into cleaning their houses and keeping their children inside. However, nothing else in the film suggests that it seeks an audience of the June Cleavers of today. There are enough household names on the cast-list to bring in both male and female audiences of all ages.**

I hesitate to outline a problem without offering a solution, even in a two-thousand word manifesto about an HBO film, so let me say this: I think it might have been a good idea to convert this project into a mini-series. It bothered me that Emma got more background than Felix, mostly because of her symbolic role, and that although Felix has been married with a child and Ruffalo had sex with a woman, we get no acknowledgment of the possibility of bisexuality, no further history on Felix, no explanation as to why he had no family at their quick hospital wedding. As it stands, I don't know why his son was mentioned, except to highlight yet again the fear and isolation faced by the gay community. A longer arc here might have allowed the inner-circle of the film to expand a little, to once again redefine the definition of "normal." Perhaps to show the beginnings of AIDS spreading to a wider population and the relief, guilt, terror, compassion  and anger this would have ignited.

A mini-series also could have fixed some of the implications surrounding the woman-in-the-wheelchair being painted as a prude, simply because she is adamantly insisting that if sex can kill you, the reasonable solution is not to have sex. A few opportunities to show her expressing sympathy about this, or being in a relationship, or--hey--being asexual but with an actual conversation about how she does understand that other people want/enjoy sex, she has had the opportunity and did not enjoy it, no she wasn't raped, and look if chocolate could kill me, I'd stop eating it. They could have fleshed out a trait that at once gives a character depth but also errs toward the stereotypical.

Finally, with more time, we could have seen more of Ned and Felix's relationship. The couple-y time we saw on screen was absolutely fabulous. I want more of it. I don't think I'd cut anything to get it, because I think the film weaves its arcs pretty well, but I would have loved more of them.

Barring that, they could have just cast a person with a disability, ideally a PoC in Emma's role and I probably wouldn't be complaining.

I wanted The Normal Heart to do more, mostly because it does so much by not doing things. Casting a disabled actor in Emma's role would have further reminded the audience of how deliberate, how important, the rest of the casting choices were in terms of the message of the film. Again, I really, really liked this film. But every time I will mourn the decision that could have made me love it.***

*I do think it's possible that had Bomer been explicitly out when he was cast as canonically straight (but bisexual in my head) Neal Caffrey in White Collar the media might have considered him "too gay," but that's another discussion. Also, his sexuality was an open secret in Hollywood, so I imagine, I think, I pray, it was known and not considered during casting.

**Again, I'm generalizing here, but I think it's easy to parse the way in which many choices were made about this film to draw in certain audiences. Ruffalo brings in the superhero-loving audience, Parsons the hipsters, Bomer anyone with eyes. A good amount of people tune in because it aired during the Game of Thrones time-slot. I just can't imagine how Julia Roberts helped bring in their target audience. She hasn't done much to attract young women (or men) recently, and I don't believe they were working hard to bring in my mom's demographic. A young woman would have done more to bring in the straight males/queer females (and, really, the latter is the group I think they'd want and be less likely to get because of the lack of females.) Additionally, I imagine the amount of "OMG you have to watch this!" that would have ensued in the disability/feminist/social justice world had they cast a disabled unknown would make up for the Pretty Woman fans who tuned into a premium cable channel to watch an honest film about AIDS.

***There are other choices that would have made it better, too, of course, like casting more ethnically and racially diverse actors. A PoC woman with a disability would have gone a long way to address multiple issues!

The World We Live In

I've been reading a lot of Middle East-centric stuff lately, trying to understand more of the world we're in. I think we've talked before about how strange it is that we read so much, like, Japanese lit in IB, but never did anything that would help us understand the issues that were shaping our lives. Like maybe they stuck to choices made sometime around the founding of the program--and the Cold War--and didn't adapt post-2001.

My roommate gave me Mary Doria Russell's Dreamers of the Day for my birthday last year.  I've read it once and listened to the audiobook. It's set in 1921, told from the perspective of an American woman who takes a trip to Egypt and ends up making friends with the figureheads engaged in the discussions that would shape the Middle East--Churchill, Lawrence. There were themes in it that would have ignited discussions in Theory of Knowledge, history, world lit... And there we were reading Life of Pi and Thousand Cranes, like it mattered if the tiger existed or what the birthmark symbolized in the face of the world we actually lived in.

But maybe that wasn't the point, exactly. I know I didn't feel mature enough to understand a lot of what we read then. Maybe it just matters that we read a variety of things, so that when we were older we'd still seek out the variety--that we'd engage with current events when we were actually able to affect them?

I just think I might have understood more, been more engaged, with books that made sense in the contemporary global context rather than in a post-1984 world that still thought 1984 was possible.

My Background in Connective Thinking

I did IB.

If you did IB, that statement speaks for itself. If you didn't, you probably have no idea what I mean.

IB stands for International Baccalaureate. It's a worldwide program that effectively means that every student enrolled takes the same standardized tests at the end of high school, or the equivalent, but it's more than that. First of all, the official IB program is two years, like A-level years in the UK. At my high school, though, we entered Pre-IB in freshman year, taking classes that would prepare us for the "official" program, getting us used to writing the essays, to doing the community service hours, to balancing the homework. Pre-IB gave us the foundations in language and science we would need to go into IB-level courses, offered us the opportunity to take the Advanced Placement courses we'd get credit for at colleges that didn't understand IB. Really, though, these first two years weeded out the smart kids who maybe didn't thrive on that kind of intensity, and ensured that those of us who would continue into "real" IB were enrolled at the same school, because most of us weren't districted for it. It wasn't a state secret that they'd started the program at our school to bring up its test scores.

Maybe it sounds like I'm explaining a sort of intense AP program, those test-driven courses that give students at schools all over the country yearly breakdowns, but IB is more than that. As a snobbish teenager, I believed IB existed as an attempt to provide American students with an educational equivalent to hardcore European academic courses like the French baccalaureat. But then, why would the IB headquarters be in Cardiff? Why would there be IB programs in countries that have the bac, A-levels, and other rigorous exams? Why would the program require service hours, a thesis-like essay, and the signature course Theory of Knowledge? Why the regimented courses--five required subjects, one elective--rather than allowing tests to be sat à la carte like AP or SAT IIs? Because IB was created to be something more.

Doing IB, which is how current and former IB students refer to our time in the trenches, connects students across the world. My current roommate did it as well, in a school in New Jersey that only offered the program for five years, and although our experiences were totally different, our shared experience connects us in other ways. It's more than that she understands the phrases of my high school experience--EE, sixth subject, Internal Assessment. Students all over the US can bond over the structure of AP exam DBQs. IB affects the way we interact with the world. The program focuses on interconnectivity. Often we read books in English that illuminated something we'd covered in History of the Americas. Analyzing a play for IB Theater led you to reconsider something you'd said in a Theory of Knowledge discussion. This was why we couldn't take IB Biology and not English, why dropping out of the program often meant switching schools--to somewhere that you could get away with As in Chemistry and Ds in History--and why choosing to take Math Studies barred you from taking Chemistry.

Not that we didn't have choices. We chose our language, our science, our sixth subject--aka the elective in which you be examined on an IB level--and our math. But no matter what track we were on, class discussion usually meant we had some understanding of the road we didn't travel. We did cross-discipline projects in science. Our Calculus teacher sometimes spent time explaining a concept we hadn't grasped in TOK. Our French readings were about current events, we read novels to understand the zeitgeist of historical periods, and our writing abilities were tested in epic math projects that required a knowledge of Fibonacci's history. Everything connected.

This connective thinking was celebrated at my liberal arts university, enough so that it helped land me my scholarship. The Core program there mimicked IB's emphasis on applying one subject to understand another. So, basically, I've spent the majority of my time as an engaged, thinking person examining things in a larger context, using multiple disciplines, and knowing that nothing exists in a vacuum. It effects everything I do. I've been particularly aware of this in my reading lately--a lot of Middle Eastern lit--and it made me think about the content of my high school experience, not just the context, which is why I wanted to give this detailed background before I go into my thoughts about current events, the complexity of cause and effect, and how I see all of that affecting my own thought processes.

Scholarship and Self Update

A comment on my recent post about The True Adventures of Nicolo Zen has made me think I need to add a caveat to this blog:

I'm a scholar by training. I read a book thinking about tropes, and agency, and that book's place in conversation with literature in general. To the average reader, a book may be a "rollicking adventure," but even if I agree with that--which I do in the case of Nicolo Zen--I can see the parts of the book that are problematic. I like parsing these out and determining what they mean to me in the context of the book, and in a broader context. That doesn't mean anyone who reads the book must do so, that they can't enjoy it, or that I don't enjoy it. I purposefully didn't frame that post as a review, because it's not. It's an amalgamation of my thoughts, which are by nature scholarly. Blame my MA.

Anyway, today's post is the more personal update I promised would come. There's a lot going on in my life currently. On the writing side, things are good. I participated in PitchWars as an alternate. My mentor Jaye Robin Brown and her mentee Nina Mareno got third place, because they are FABULOUS.

Lifewise, things are less excellent. I'm mostly recovered from the spinal fusion surgery I had in October, but still have some pain and stiffness. My life is in limbo, because I'm planning another minor surgery in March, and don't want to find a significant job position and then have surgery within my 90-day probationary period, because that did not end well last time. I am going to take on freelance work in the meantime, and am unashamedly pointing people toward my GoFundMe page if they have the resources to help me stay independent in the meantime. The other reason I am so willing to ask for help and not to find a fulltime position yet is that I haven't returned to Boston from Christmas yet. My terminally-ill father is in hospice, so I've stuck around to help my mother with my little brother for the duration. I'll probably be back up north in a couple of weeks, one way or another.

So that's now in a nutshell. More pretentious thoughts to come this week, I'm sure.

The Stereotypical Representations in Nicolo Zen

I have been a horrible blogger for a long time. I can’t promise I will get much better, but I want to do better at putting my thoughts out into the world, mostly to save my long-suffering mother and roommate from having to listen to me ramble constantly. I have personal things to get you, my friends and readers, caught up on, but for today my thoughts are centered on the book I just finished The True Adventures of Nicolo Zen 

WARNING: SPOILERS AHEAD

 This is a middle-grade novel set in eighteenth-century Venice. Nicolo Zen is a newly orphaned musician who disguises himself as a girl to get into an elite orphanage orchestra, overseen by Master Vivaldi. Christopher dealt surprisingly well with the lose of privilege Zen takes on in becoming a girl, and the story of Nicolo’s disguise, the intrigue in the orphanage, and the characters—vile and angelic alike—made the book initially promising. There were problematic elements already, though. Both of the villains within the orphanage walls were disabled. Aldo is a blind boy who has the clichéd enhance senses and milky eyes given to every blind villain. Additionally, his lack of vision means he is allowed to be in the girls’ presence without worry of impropriety—arguably denying his sexuality—and then he takes advantage of this privilege. The traditionally repugnant housemother, Marta, is a former member of the orchestra, deafened and embittered thanks to a “fall” down a flight of stairs. Her deafness supposedly prevents her from correctly reading situations, causing her to punish girls for nothing because there’s absolutely no way for her to know what’s going on without hearing their voices. Oh, but she may be faking the extent of her disability, because of course.

Even with these tropes, which Christopher obsessively attempts to balance out with a kindly cook who lost a leg in the Navy, I think I would have enjoyed this story if it had been a historical fiction novel about a boy giving up his male privilege to become a great clarinetist. Instead, his attempt to foil Aldo’s system of kidnapping helpless girls leads to his being outed as a boy (perhaps more realistically than most disguise novels) and thrown out of the orphanage. No matter, though, he has his friend the cook to help him away, and he has a deus ex magician.

You see, Nicolo’s clarinet is magical. It doesn’t play itself, exactly. It teaches him to play. Either way, it takes his agency long before he disguises himself as a girl. And its maker, Massimo the Magnificent, is the king of agency-taking. His assistants seem beholden to him, he threatens Nicolo against losing the clarinet even though he implies it will only work for its first owner, he demands without giving—and this is never acknowledged. Moreover, he is almost rewarded. After he gets angry over Nicolo’s friend Adriana’s decision not to become his new assistant, he demands they bring him a replacement. Juliette, the girl who Nicolo and Adriana effectively give to him, eventually marries him. The text may want you to think this is a love match, but the undercurrents of Massimo’s need for control makes it sit wrong.

Worst of all, Massimo solves most of Nicolo’s problems for him. Nicolo isn’t a weak character. He attempts to reclaim his agency by asking Massimo to take the spell of his clarinet, and he rescues his friends from Aldo’s clutches on more than one occasion—again, as girls they can’t save themselves—but in the end (LOOK A SPOILER) it is Massimo who directly and indirectly solves the Aldo problem. And when Nicolo looks at Aldo for the last time he remarks: “The crows had yet to pluck out Aldo's blank, milky eyes, but I would be lying if I said I felt a shred of pity for him at that moment.” (232) This connects Aldo’s eyes—his blindness, his disability—with pity, implying that looking at those eyes should incite pity. Indeed, implying that the fact that the crows have yet to pluck them out is a negative in some way, that even the birds aren’t attracted to this ugliness, or that even in death he is unequal to his able-bodied thug friends.

I honestly believe this might have been a better book without the magical realism. It is probably meant to evoke the operas of the time, something about which I know very little, and there are themes of doppelgangers, agency, and ability that might not come out in a more realistic novel, but the period and subjects could be really interesting if explored in-depth. Most disappointingly*, to me, the world of the Venice orphanage is set up so well, with so much detail, but once Nicolo is yanked out of it, his surroundings become much more superficial and the characters surrounding him much less interesting, the magic overshadows the realism to an unnecessary degree, and the stakes no longer seem dangerous.

I wish this had continued to be a book about a boy who disguised himself as a girl in order to succeed. It would have perhaps taken more suspension of disbelief without the magic, but I would have enjoyed it more.

*I accidentally typed "disapprovingly" in my first version of this post. Thanks to a helpful anon, I found the error and fixed it.