Me, Before You & After: Romance wants and takes, but who gets to tell disability stories?

One of the movies opening on my birthday weekend is Me Before You. It would seem like a great birthday date movie for a woman in my demographic. It’s a romantic tearjerker. There's none of that violence and death that is in all the other movies these days.

            A woman I respect (and still do) thought I might especially like Me Before You being disabled. The movie features a man with a disability with an able bodied woman. I’m livin’ out that romance only  gender swapped*.

*(If anyone knows of movie with a woman with a disability and an able bodied man please tell me. I can’t even find an offensive movie with that coupling.)

She loved him enough to kill him 

Here is what I know about Me Before You, which is adapted from a novel by Jojo Moyes:

1) This super hot rich white guy gets paralyzed. He is a quadriplegic. (played by an able bodied actor)

2) He gets a caretaker.  (Played by the current hottest fantasy girl Emilia Clarke. She's on Game of Thrones and plays  Khaleesi/The Queen of Dragons)

3) They fall in love.

4) He loves her but due to the pain/complications of disability he decides to kill himself.

 

5)  Of course, she doesn’t want him to kill himself.  She could physically stop him. (It’s not like a quad could put up much of a physical fight unless it’s in fantasy/sci-fi. I would so watch that movie! )

6)  She decides that it would be wrong to stop him and she ends up helping him. 

7)  The follow up book Me After You is about her dealing with life after he’s dead. Now, I am not sure if she get knocked up with his kid, but come on she has to … 

As a Disabled Blogger there is the typical angry rattling voice in my head: 

    

 “What an ungrateful white privileged asshole this quadriplegic is! He has Khaleesi. He has mad money to get all the care he needs but that isn’t enough for him. He can’t deal with not being the king of the world. And don’t even get me started on his Mary Sue girl friend. What is Emilia Clarke taking this role? She is The Queen of Dragons. I want to see her burning rapists I don’t want to see her dating and crying. Who are these stupid women watching these movies? Ugh!...”

This angry voice thinks about how most women in my demographic would be “the dumb women seeing these weak movies” I would think they felt the opposite of how I felt:  

 Emilia Clarke seems like such a talented girl. Why doesn’t she do more of these nice movies instead of that violent show where women are assaulted and gutted? Jojo Moyes’s book tells of  a love so great it goes beyond body and soul. It goes beyond death. Can you imagine loving someone so much you don’t even care that they can’t walk, or have sex? Can you imagine loving someone so much you’d help him die? Did you know that the author encouraged the studio NOT to higher a ‘blonde supermodel’ type. They hired Emilia Clarke even though she is so short and apparently not supermodel material*. Good for her!"

                                                                                  (This is true*.)

     As for my own voice I will say, Emilia Clarke, can take what parts she wants*. (*Especially since she’s so short and her beauty is so atypical. Oy!) Jojo Moyes, The Author of Me Before You, can write what she wants. I think it would be downright stupid to slam either of these women personally.

         Shaming them, or the fans, would have the same affect as shaming Stephanie Myer on the lack of feminism in Twilight. It will just be shaming girls/women for liking the romantic notions they hold dear about love, nurturing, and yes, suicide.

         The heart wants what it wants and sometimes it wants (metaphorical and symbolic) death. How many times do Edward and Bella try to die for each other? Telling someone not to like a fandom or romantic trope is like telling them not to date that dangerous exciting boy. They’ll just do it more.

         

And really, how else can you prove your fantasy love harder than through death? What an ingenious thing for Jojo Moyes to invert that trope.

         When I was young and angry I LOVED Sid & Nancy. No, I loved the myth of Sid & Nancy. I loved the movie where she turns to him and says: “Do you love me enough to kill me?”

Me Before U is Sid & Nancy 4 Soccer Moms

         Sid and Nancy’s addiction pain was both physical and emotional. Their life/addiction also included constant partying and being in love. It was so glam compared to my lonely and boring physical and emotional pain. 

I think really I wanted to change their tragic story. I wanted to make the real story of a boy (probably) murdering a girl he loved into something that was actually about love and not pain. Their pain was worth it because they lived and loved so greatly, right?  

When people told me my Sid & Nancy interest was sick that criticism hurt me far more than any dates with punk boys. I did no heroine. It was a safe way to explore love, lack of control, and loss.  I took their story and I used it for myself. It was a fantasy. It had nothing to do with the real life Sid and Nancy. Me Before You steals no actual person’s story (that I know of). I believe that people have every right to their fantasies. 

Me Before You and its sequel is the middle-aged soccer mom’s version of my Sid & Nancy. It takes death and pain (which will eventually happen to all of us) and turns it into a whirlwind romance. While the woman gets to also be very nurturing/selfless. She gets to do what all good wives do and she gets to do it all quickly while they are both still young, pretty, and in love... And what's more punk rock than dating a disabled boy. Everyone will tell you: "No, don't do that! He's bad for you."

       I know many are criticizing Me Before You "because it is a Hollywood plot to get us to support assisted suicide." I know it is not likely that a Me Before You fan will date a quadriplegic man and then help him kill himself. Maybe the book will even get people interested in dating people with disabilities, but a less hardcore version of the suicidal character. I never dated any guys that were truly Sid Vicious. Mostly just boys with Sex Pistol posters that also liked Repo Man.

So I want to say to these women. I understand. I think it’s okay.

 But, I just want people to know that in stories like Me Before You a whole minority group (people with disabilities/chronic pain) is being used in the romantic fantasy. I understand, but I am one member of that minority group. Our real life stories are much more complicated and less pretty. This is my story with Me Before You, before Me Before You... growing up with disability tropes: 

Shortly after my 14^th birthday on 90210* there was the “special episode” where the hot blonde went out on one date with “the cousin in a wheelchair” despite the rest of the characters saying it wasn’t a good idea.

 

Just proof this horrible ep happened

        

          We never see him after this one chaste date. There were no successful happy people with disabilities who grew up on TV. The kids just disappeared. 

Maybe they all killed themselves.

         At 14 I might have killed myself. I wanted to when I started to believe that someone would only date me, or be my friend, to prove their moral superiority to their real friends. But,I protected myself the only ways I could. I became angry and a little weird.

          

         My favorite 90210 character ended up being psycho slut Emily Valentine. She once threatened to set hot guy, Brandon, on fire. He was once against the wheelchair cousin dating. I kind of wanted Emily to set everyone on fire and then have the show be about her. I told people that. I didn’t really get why I felt so passionate about it at the time.  Then I quickly went into my Sid and Nancy phase. 

(* I know the new 90210 had a guy in a wheelchair because teenager girls in wheelchairs STILL don’t exist. He was played by an able-bodied actor because there are apparently STILL no actors with disabilities.)

        

Actually Emily did have a disability. She was a psycho. No wonder I liked her!

         Fast-forward many years later to the talk with my friend. I talked about how Me Before You may not be good for people with disabilities. Especially young people with disabilities, because it was basically saying that if you are disabled life isn’t worth living. 
         
        It is saying that if an able bodied person becomes like you they wouldn’t want to live. A rich guy has The Queen of Dragons fall in love with him, but he decides he  still wants to die because he's a quad. So, what chance does a real life sixteen-year-old pimply kid in a wheelchair with just  Emilia Clarke's posters have? (Maybe he doesn't have her posters since I've heard she is so funny looking and short.)

 

So my friend pointed out it wasn't that he had a disability. It was about his pain and medical problems. Perhaps it is a different when people are sick and/or in a lot pain? 

Yes, sometimes it is. Sometimes a person in a lot of physical continuous  horrible illness/pain wants to die. That doesn't include all people with disabilities. 

But depending on how you define "horrible" illness and pain it could. 

Oy! All I can say is: I was happy to be talking about this as an old(er) birthday approached. When I was younger I would have been so angry and shaken and wouldn't know why. 

So, then I got an infection and didn't know it. It sucked. This old girl WAS shaken. I thought my CP and ADHD were just randomly spinning out of control. I had a lot of physical pain. When you are my age with CP it's common that you have aches and pains that come and go as well as tiredness. But, this pain was so bad.I had to sleep for hours both before and after taking my daughter to a birthday party… that was just down the street. 

I feel behind in my writing and missed out on an opportunity. Needless to say I was very grumpy. When I found out it was an infection I could take antibiotics for I was so relieved. When I found out it was yet another UTI and that meant intercourse with my husband was giving me UTIs again I was heartbroken**. 

(**This actually had nothing to do with having CP/disability. People with CP have NO extra danger of getting UTI infections with intercourse. People with CP can and do have intercourse with no danger. However, getting a UTI for me with CP does affect my pain and walking ability.  I am just a cursed person.)  

When I feel like this, which can be every few months (UTI or not), I ALWAYS think about suicide.          

Yes, you read that right. I am a happily married (not lying about that) middle class mom with a five year old. I worked at one of the most famous suicide support services in the country. And when I get very ill and in pain I always think about suicide.

        I know there are many people with disabilities against assisted suicide. We don't want to see one of our own give up or prove the awful stereotypes right. So, when I'm feeling suicidal I am that “white privileged asshole” letting down all the people of the world that want me to stand up and show everyone my life is worth living. (I can stand. It’s just painful.) 

But I’m not living my life to prove something to others. My life is worth living for me. Just me. 

Despite not being able to do the things I want to do, despite lack of control, despite pain...(All these romantic things) my life is worth it.   Luckily, I have enough support. I also understand that the worst pain and is temporary (for me.)

I can tell you when I am in pain I hate it because it hurts.  But what I hate more is that it cuts me off from other people. I think: They won’t want to hear my experience. It isn’t fun or romantic. It is a downer. 

         I can tell you when you’re not a dead rock star and someone steals your story, and twists it, it hurts. This happened to me when one of my old professors (with a disability) stole my life experiences and put it in a book that I won't see a dime for. 

         The professor that did this is against assisted suicide on every level. I have worked in suicide prevention for a decade. If you call my hotline I will do everything to stop your suicide. But, I am not against assisted suicide*. 

What I am against is taking people's choices or stories away. I won't steal someone's story even when I when I could use it to advance my career. I wouldn't take away a choice because I didn't like what it said about my minority group especially if I was taking it away from members of my group. *(As long your choice is truly safe and one of your full true consent.) 

You can make choices I don't like. You can LOVE Me Before You and continue writing/reading those stories. If someone told me I'd have to stop romanticizing punks and rebellious women I'd laugh, and then go buy a Buffy comic... and write a story.

However, do know I resent being used as the trope for when suicide is justified. I imagine in Me Before You he was far more ill, disabled, and in pain than I ever am at this point... but what about the people who are in that situation? Where are their REAL voices and stories? 

   I do wish Me Before You story wasn't about him choosing to die, but choosing to live, but then, that isn't very romantic. Just like my real story isn't. But, maybe someone ( like one of us or someone who get us) can romanticize our stories and have us, I dunno, live?!* (*Awesome authors that tackle disability with romance: Kody Kepliner, Ava Jae, Leigh Bardugo & Francesca Lia Block)
 I want more stories like mine out there. I want them made to be romantic without death or the old tropes! I think this can happen when we look at WHY the tropes that hurt us or offend us exist and then work on changing them!

         So where does this lead this Me Before You, this rare glamorous and romantic depiction of what I, and others, live through with disability and chronic pain? 

         I dunno. Maybe Emilia Clarke will win an Oscar. (Hopefully, because you know, I hear she's so short and almost ugly. It was so nice of Hollywood to give her that role. Maybe they Hollywood can stop congratulating themselves for hiring "non-supermodels" and start hiring disabled actors, writers, directors and they really feel morally superior like the 90210 kids. ) 

As for me I'll be watching Game of Thrones. This mama loves The Mother of Dragons. She is literally a guilty pleasure, this tiny blonde girl that mostly rescues brown people. I know there are people of color that hate this about Game of Thrones. They should. We all should keep challenging writers about the harmful tropes.

 But,  I will end with a Game of Thrones plot point: 

  Last week was probably the third The Queen of Dragons/ Khalessi burned rapists and demanded liberation for all women and slaves. I literally cry (like a girl at a romantic date movie) every time because I'm so moved.

Peter Dinklage's character, Tyrion “The dwarf,” as he’s often called, is now Khalessi’s advisor. He keeps telling her that true politics aren’t as simple as burning down things and demanding liberation for all the slaves. He says change happens slowly with lots of diplomacy and compromise. He is right. 

Part of me wants her to burn him for saying it. Or maybe just ignore that he is right. However, Tyrion is a character with a disability that can’t die anymore than Khalessi. His character is essential and awesome. That is romantic.