disabilities

Thoughts on Me Before You

me before youY’all remember the movie Me Before You (2016), right? It came out the summer of 2016 and every women’s fashion magazine was talking about it. I wasn’t particularly interested in seeing it at that point. It was later critiqued by the #StarringJohnCho campaign for being a super-white film (a valid critique, if you ask me). I then became somewhat more interested, but I guess the thought slipped my mind until recent days.

Well I finally watched it over the weekend. I remember the main controversy surrounding the movie had to do with the commentary on disability, and how the movie seemed to imply that it’s better to die than to live with a disability. I feel like that critique is also valid; while watching, it did feel as though this rich white boy was whining about missing things about his “old life” that, on average, almost no one gets to experience anyway (water skiing? Working a job that manages companies?? Being engaged to a manic pixie dream girl??? Living in an apartment of that size in fucking London????).

I think what bothered me the most about the film actually had to do with the emotional labor of the feminine protagonist, Louisa Clark (Emilia Clarke). In the movie, she is hired by Will Traynor’s (Sam Claflin) mother, presumably to be a sort of day nurse for her son, who is quadriplegic after an accident. It should be noted, Louisa just lost her job at the cafe where she used to work, and she lives with her family in her home town. She was basically desperate for a job, and this one happened to come along (a feeling I relate to a little too well). The family that hires her, the Traynors, are unimaginably wealthy people who own a castle. Yes, a castle.

Louisa, who goes by Lou, finds out Will is planning to go through with physician-assisted suicide and believes it is her responsibility to keep him from doing so. At this point, I was like…wait, what? Why would you take on that responsibility?? Literally no one asks her to do this. Mr. Traynor alludes briefly to the fact that Mrs. Traynor may have hired Lou to fulfill some of Will’s emotional needs, which Mrs. Traynor does not deny, but at no point do either of the parents explicitly say that Lou is expected to keep their son from killing himself. (I felt it was also problematic that they hire Lou to fulfill emotional needs, but I can’t put my finger on why. At least she was getting paid for the labor, but it is labor that I feel like the family specifically hired a woman to do. Why wasn’t Nathan (Stephen Peacocke) enough to keep Will happy?). In this sense, I feel like Louisa is fulfilling some sort of weird white-savior complex/feminine gender role in which she believes it is her duty to interfere where, in reality, she doesn’t have to. In some ways, I felt like this was tied to class as well. As a poor, young woman, she had little control over other factors of her life, so she projects her own worth onto whether or not she can keep this man alive. If she was a smart employee, she wouldn’t. And if her employers weren’t manipulative assholes, they would maybe make the distinction between their expectations of her and their hopes for their son clear to her from the beginning. I felt like portraying her this way is egregious because of the kind of unrealistic expectations it puts on feminine labor. (Is it not a well-known abuse tactic for men to say they will kill themselves if a woman leaves?)

I felt like the movie also suffers from a general category that I refer to as “pacing problems”. I find that a lot of romantic comedies suffer from this problem; I just wish movies in general were more realistic about human communication (or maybe I’m just picky and I like people to be direct with me?). I don’t remember either character explicitly say anything about their feelings to each other. It is just assumed at some point (After Will attends Louisa’s birthday party? After they go to Will’s ex’s wedding?) that the two like each other. Maybe. Kinda. And that Louisa is doing all this fancy stuff for someone she is romantically interested in (taking him to horse races! Concert! Fancy vacation!), and no longer just because she is employed to do this. Like, sure, Will and Lou say some romantic shit to each other, and maybe I’m just being hella asexual, but they could just be saying these things as friends? I know people who say very intimate, romantic things to each other as friends? It is a possibility?

Because of this lack of directness and super-heterosexual assumption-projection, it felt to me as though most of the action doesn’t happen until the movie is nearly over. That’s when Lou and Will kiss for the first time (I guess confirming what has still never actually been said–that they have feelings for each other?), they kiss for the second time, they kind of break up, and then right before Will dies, they make up, all within about 30 minutes in a movie that’s 110 minutes long. It was strangely noncommittal. Instead of talking about their purported raging boners for each other and not doing anything about it (the way they do in the Twilight series), Will and Lou were more inclined to wax philosophical about life before and after Will’s accident. Rather one-sided, considering Lou probably has a lot to worry about as a 26-year-old who has only worked one job before she started working for the Traynors.

I digress. I do think Emilia Clarke deserves some recognition for being a moderately talented actress. In Game of Thrones, she’s a terrifying Daenerys Targaryen, and for this role, she becomes a slightly anxious, chirpy, naive woman in her mid-twenties whose entire closet seems to come from Modcloth. It’s quite the about-face, and I think Clarke pulls it off gracefully, despite the shortcomings of the role itself, which I blame the writers for more than the actors. I wish I could see Sam Claflin in a more fleshed out role. I’ve only seen him in The Hunger Games, in which he plays a small role as Finnick Odair, and now Me Before You, in which I still think he doesn’t have much of a role. He’s a grumpy dude, and then he’s an in-love dude. With the exception of the disability, this is basically how dudes always are and in no way showcases acting. I feel like I can’t comment on Claflin’s potential because I haven’t actually seen it yet.

 

In short, Me Before You is somewhat entertaining as a collection of scenic shots of small-town England. To me, an accurate description of the plot would be “Two people have a fling while doing rather indulgent things together, and then one dies and the other has to move on.” The film did not convey anything deep or even particularly romantic in my opinion. I’m even somewhat let down by this film poster. Emilia’s character is supposed to wear this gorgeous, low-cut sleeveless red dress. In the film, this dress never appears; Lou wears a knee-length red dress with sleeves to the concert and a low-cut, sleeveless blue floral print dress to the wedding. Perhaps I’m petty, but it was such a let down! I was so waiting for that sexy red dress and it never showed, not unlike the spunk in this movie.

An Analysis of The Last Illusion by Porochista Khakpour

lastillusionContent warning: child abuse, sexual assault, suicide

My most recent read was The Last Illusion by Porochista Khakpour. I chose the book from this list of Asian American authors (and you’ll find I will probably read a few more from that list before summer is over). The list implies that Khakpour is on par with some authors whom I really admire, like Jhumpa Lahiri and Amy Tan, so I had pretty high expectations, which I am not sure the novel lives up to.

It should be noted, this book is based on a legend from the Persian epic, the Shahnameh, the Book of Kings. I personally have never read the Shahnameh, so there is a certain point of reference missing in my analysis.

To give her credit, Khakpour is a talented prose writer. The beginning of the book reminds me of Salman Rushdie’s Midnight’s Children:

His hair and skin were the color of–no use to sugarcoat it, Khanoom would snap–piss. He was something so unlike them, unlike all of nature. (2014, p.3)

This first description of the protagonist, Zal, reminds me of Saleem and his gargantuan nose from Midnight’s Children. I have always had a soft spot for ugly-baby descriptions. It thrills me that many writers of color do not want to portray their protagonist as attractive, that in some cases they are downright scary. It supports the idea that ugly people deserve to have their stories told, too.

Khanoom’s distinction between her birds and her son also reminds me of an excerpt from Clive Barker’s Abarat series. There is a story in Absolute Midnight about a mother who gives birth to two sons: one that is the embodiment of all of her good, and the other that is the embodiment of her evil. The good son is a homely thing that resembles a worm. The evil son is a beautiful creature, colorful and charming.

Similarly, Khanoom is enamored with her birds, which she refers to as her children. She cuddles them, sings to them, and makes sure they are fed and clean. She abhors Zal, whom she keeps in a cage with the rest of the birds. She calls him “White Demon” (p.5) and prays for his death. It is as though Zal, scrawny and pale as he is, is what little good Khanoom is capable of, and her numerous, glorious birds epitomize her cruelty.

Khakpour does a great job of commenting on the hypocrisy of able-bodied people and the mental health profession throughout the novel. I feel as though every time she wants the reader to think about what we are taught about disability, she uses the italicized word, considering. For example:

His father had set it all up…and would not have created an abnormal environment for his son…whom Hendricks so badly wanted to grow up as normal as he could, considering. (2014, p. 82)

These were Zal’s thoughts when he took Asiya into his apartment for the first time. The “considering” piece always refers to his history as the Bird Boy, and  how he made the “miraculous” recovery from a squalid, screeching boy to a relatively well-adjusted adult. Hendricks thinks it would be so great if Zal was just like everybody else, implying that the way Zal lives is such an inconvenience to able-bodied people like Hendricks, as though being “normal” is such a wonderful way to live. Khakpour invites us to question whether or not our “normal” is really as wonderful as we think it is. Is Zal better off as a harmless, insect-eating, asexual, bisexual person who is a little strange? Or is he preferable as an alcoholic, sexist man who passes for “normal” by our standards?

I think it also invites us to question the well-intentioned people who frequently live with, or are guardians of, people with disabilities. Is it really for Zal’s good that Hendricks is hell-bent on making him “normal”? Or is it more so to prove that he is a good father? Why doesn’t Hendricks approve of Zal when he behaves in a “bird-like” manner?

I also love Khakpour’s commentary on love. When Zal first meets Willa, he describes his feelings.

He felt, he though, maybe what they called love–THEORY NO. 4: Love?–but of course it wasn’t, he quickly told himself, love did not come so illogically. It did not do that at-first spell that was just a human joke…(2014, p. 92)

Perhaps my cynicism is showing, but I love how Khakpour gives voice to my skepticism toward “love at first sight”. I think Americans thoroughly exaggerate the role of physical attraction and infatuation in “loving” relationships. I personally believe the exaggeration is a natural by-product of capitalism, in which sex becomes a spectacle that people are willing to pay for, and which people then fervently rush to sell as per the laws of supply and demand. “Love at first sight” is not a truth, but a platitude we tell ourselves to pretend we are satisfied in mediocre relationships. Actual “love”, the act of caring for flawed and petty human beings and understanding they are not obliged to us in any way, is a lot of hard work.

In reaction to this first response, Zal gives us another description of Willa the second time he meets her.

He wanted to be nestled against her bosom. In what way? Like a child, he thought. Like a lover, he thought again. She confused him to no end. (2014, p. 119)

In a digital story I created last year, I said “love is unfathomable. If you understand it, it is not love.” Zal’s experience illustrates this sentiment. He doesn’t seem to know what he wants to be for Willa, or what he wants Willa to be for him, but it is more than just being a lover. He also mentions wanting to be a friend or guardian. His feelings resonate with me. I think it is more accurate for me to say I have felt love towards friends and family more than I have to lovers, or whatever you want to call them. Acting within constructs in relationships has obstructed love for me more than it has bolstered it.

Khakpour, however, does not use her strengths to her advantage. She makes great commentary on disabilities and traditional relationships, yet that is not what she focuses on. She instead turns her focus to the 9/11 attacks and tries to make a really cliché allegory about life. While I think her commentary on 9/11 itself is actually quite interesting, she takes a huge, wandering portion of the book to finally get there.

First, I think Khakpour makes the mistake of establishing the premise of the story too early. As soon as I found out Asiya is clairvoyant and the dates begin to seem very important about one third of the way through the book (with the Y2K New Year featuring as a prominent incident), I already knew to expect the book to end with 9/11. It literally takes the other two thirds to get there. After the New Year party, The Last Illusion seems like a long story about people who do nothing–the repetition is tedious. Asiya and Zal break up several times. Each time, Zal goes to Hendricks, who tries to pull him out of his misery. Then Zal makes the decision to go back to Asiya, and Hendricks tries to dissuade him because he doesn’t like Asiya. Zal leaves anyway, giving some platitudes about establishing independence. This occurs two or three times in the novel.

Toward the end, I really feel Khakpour is trying too hard to make a point. It starts to sound like a college application essay. Silber starts asking himself “What does it all mean?” (p. 254) over and over again, as if anyone needs to be reminded to find meaning. On page 267, Silber literally thinks, “Maybe money is the key.” She really loses me there, as if we need anyone else to point out any more cliches about greed and avarice and money. And then we have Manning calling Asiya a terrorist on page 270, and I just about gave up. Here is a book about 9/11 and the word “terrorist” is in the novel. How compelling. So original.

Asiya is one of the most grating characters in the novel (though honestly, Zal himself can be quite grating at times). I would almost be willing to forgive Asiya for her behavior (she has to put up with so much sexism from Zal–he doesn’t believe her even though she is right (p. 260), and he can be quite manipulative. Having sex with her just to prove he is normal (p.152)?) except, except, except, she is a white girl with an Arabic name. On top of throwing all these tantrums because she wants people to believe her and they don’t (what does she honestly expect? She’s a skinny little artsy woman. People are not kind to women in general, let alone strange ones) she gets arrested, and when asked if she has a Muslim name, responds, “Absolutely” (p. 279).

I suppose this was supposed to show how defiant and brave she is, but for me it rings so hollow. Asiya McDonald was born Daisy McDonald, and she got her name by dating a Muslim guy at one point in her life and then converting to Islam. At the end of the day, she is still a white woman, and still has all the privilege that that identity confers. When I think about the Muslim women of color I know, the hijabis, the ones who are told again and again to go back to their country, the ones who have cried over the things people yell at them, the ones who literally have eggs thrown at them, Asiya McDonald is like a bad joke. I’m still waiting for the punch line. I’ve said this before, but I have a hard time believing white women ever truly show “resistance”. They only ever seem to echo all that women of color have already done.

Of course, Khakpour might have portrayed Asiya this way intentionally. You never know.

Another piece that irked me to no end is the description of Willa’s sexual assault. On p. 124, I find out that the reason why Willa overeats and is obese is because she was kidnapped as a young girl and repeatedly raped by her kidnapper. This is actually a common response that women have to sexual trauma (as reported by the Atlantic). Yet, Khakpour is surprisingly euphemistic about it, describing only how he “hurt her again and again” (p. 124). In context, this is how Willa is explaining herself to Zal, so I suppose this conveys how hard it is for Willa to talk about it, but I felt this portion would have been so much stronger if the incident was referred to as “rape”, or “sexual assault”. Since she is 20, it is reasonable to assume Willa knows what these words mean. This was an opportunity to shed light on a really important issue, and instead of naming the problem, Khakpour hides it.

I was further irked by the explanation for Willa’s suicide. On p. 292, it is said that “Apparently only in depression was she losing the weight that had made her depressed in the first place, most likely.” This angers me to no end. It was Willa’s rapist who forced her to feel she needed to eat all the time, and it was her rapist who made her feel suicidal. However, Khakpour takes the route of blaming Willa’s weight for her suicide, which not only body-shames Willa, but also lets her rapist off the hook instead of holding him accountable. It’s a depressingly conservative stance to take.

Khakpour slightly redeems herself with her description of 9/11, the Last Illusion, though she makes me wait entirely too long to get to that point. It turns out like a dream, Silber’s last illusion.

The illusion had not gone right, but it had not gone wrong. It had gone real. (p. 315)

I remember the day, and it was quite dreamlike. I was 9 years old on 9/11/2001, just starting my first days of fourth grade. I remember coming home from school with my brother and my mom to see the image of the Twin Towers falling, on channel after channel, again and again. It was strange how easily I believed it was real, how there was no skepticism at that point in my life about CGI or Photoshop, that I knew beyond the shadow of a doubt that I was seeing something real.

 

Zal realizes, after the illusion, that just like so many things, a smile is just another human trick (p. 319). There are some implications there about constructions, how even the ways our body is supposed to react to things are social constructions. Zal smiles on the day of 9/11. It would certainly explain why I sometimes laugh in classes about genocide.

Invisible Disabilities 101

Today, I was reading these great blog posts about chronic illness and the spoon theory. (You might want to read them, too, before you read this post). They inspired me to create a workshop about understanding chronic illness and invisible disabilities. Because I have a background in programming for undergraduate college students, I envisioned that this workshop could be facilitated by people who work directly with students, such as professors, resident assistants, staff members in student activities, multicultural centers, service learning, and others who work on college campuses.

I ought to preface this: I do not personally work with people who have chronic illnesses or disabilities. I also do not have a chronic illness or disability, and I do not speak for anyone who has one either.

I do, however, think able-bodied privilege is something people need to be more aware of, and I think this activity is an easy way to raise that awareness.

In my experience, undergrads are usually introduced to conversations about disability through simulations. You may be familiar–think “disability dinner/lunch/meal,” in which the facilitator randomly chooses a disability for each participant and then proceeds to tie a bandana around one student’s head to cover their eyes, tie an arm for another, give ear plugs to yet another, and so on, and this is supposed to help students “feel” what it’s like to have a disability. The participants then eat their food in slight discomfort, admit this would be a frustrating life to lead, and then never think about it again beyond the 30-minute discussion. Rarely do invisible disabilities and chronic illnesses (besides STDs) make their way into this conversation. Yet, there are millions (up to one in two people in the United States, according to disabled-world.com) in this country living with autoimmune disease, mental illness, hormone imbalances, and degenerative disease.

In the post about the spoon theory, the author talks about the choices a person with chronic illness has to make every day. Students in college hardly ever think of these decisions because they assume they are at the peak of their physical fitness and that no one their age could ever be chronically ill. My hope is that this activity will introduce students who have no prior experience or knowledge to the needs of people living with invisible disabilities.

Invisible Disabilities Activity

Materials:

pencils

paper

*10-15 plastic spoons for each participant

*may be replaced with any number of small objects, such as beads, slips of paper, paper clips, etc., as long as each participant gets between 10-15.

Procedure:

1. Hand each participant between 10-15 spoons, but don’t give everyone the same number.

2. Ask everyone to make a list of tasks they did that day, and tell them to include things they still have to do. Tell them to be very detailed. For example, instead of “I woke up”, tell them to break it down into brushing their teeth, showering, putting on clothes, wearing makeup, walking up or down stairs (if that’s what they did), cooking, eating, etc. Tell them to include chores like homework, laundry, and washing dishes, as well as social activities like meeting friends, shopping, or going to the movies.

3. Instruct participants to count the number of spoons they have. Explain that this represents how much energy they have to do what they need to do in the day.

4. Tell them to count the number of tasks they have written down. Ask how many of them have enough spoons to do everything they have written down (it shouldn’t be that many).

5. Tell them to go back through their lists and pick the tasks they would most like to get done in the day given the number of spoons they have. Explain that if they have skipped a meal, that also costs a spoon.

6. Allow participants to discuss how their days would go differently if they “had” a chronic illness. Draw attention to what choices they had to make. What did they choose not to do? Why did they make that choice? What do they choose to spend time doing? How do they think their lives would change if they had to make choices like this every day, with the same number of spoons for each day? Explain that it may be possible to use more “spoons” than usual in one day, but then they would have fewer to work with the next day, since they would have to recover from having exerted themselves.

7. Discuss ways to be an ally to people with disabilities and chronic illness. For some suggestions, click here.

 

I realize this is a simulation, too. And if there’s anything that needs to be changed or can be improved, please let me know. My goal in creating this workshop was to change the one-sided and reductionist conversations that come from “disability dinners”. I was getting tired of how participants are often more patronizing after leaving those dinners than when they begin. I hope this activity shows that people with disabilities still have agency and independent lives, albeit it’s different than what able-bodied people might imagine.

Something that struck me about the spoon theory post is when the author said she has forced herself to slow down. She has to constantly think about several factors that affect what she can do, and that it is the “beautiful ability” of able-bodied individuals to just do things without thinking.

I want people to reflect on that, on how they have unlimited spoons that they can spend doing whatever they want every day.