Friday, June 24, 2016

From a mother with a disability to one who grew up with it: My letter to Brock Turner’s Mother

From a mother with a disability to one who grew up with it: My letter to Brock Turner’s Mother,

         I confess I haven’t been at my best with your son’s case. It was so easy for me to use you as an example of someone that is nothing like me. At first, I only read “the worst” parts of your letter (the complaints about decorating.)  But, the more I read the letter the more I realized that we are alike. I’m a mom. I love my family more than anything. I love my community. In fact, the recent events in the media made me decide to bring my family to church. (Godless Unitarian Church because I am, after all, one of those California people.)

         I saw that you had a brother with a disability. You used him in your letter to show Brock’s kindness as you have every right to. I mean, you gotta use what you have. I know I would talk in my college admissions about my going back to the hospital where I stayed after my orthopedic surgeries. I went there for “to give back to kids more disabled than me,” because, goodness knows, I wasn’t really one of them. But here is the thing. I was one of them. Because, really I'm like you, a suburban mom, AND I'm a person with a disability too. 

But there are things that bother me. Things that you seem to think make us different and ways that I feel we are different. 

First I have to get your story about Brock selling popcorn to a woman that was too disabled to eat it. 

You talked so much about Brock sacrificing for achievements.  Everyone sacrifices for their achievements. That’s why they’re achievements. You should know from your brother that people with disabilities have to work so hard for just any achievement (walking, reading, eating food with no teeth.)

Honestly, there is one story you tell about Brock that makes me feel like we are very different moms. It isn’t going to be what you expect. It is the story you tell proudly of Brock winning yet another competition. He wanted to be the TOP SELLLER in Boy Scouts. So, he sold an abundance of popcorn to a 90-year-old woman who had no teeth.

         This here achievement doesn’t make Brock special. To me it shows he’s manipulative and competitive. Granted we are very different people in the regard. To me it shows that this might be how Brock really treats people with disabilities, or people who are disabled, (like incapacitated) when he wants to win something. I’m not saying it shows he is a rapist. I’m sorry to say the evidence shows that.

         You brag that while she couldn’t even eat the popcorn Brock was “so charming” and “respectful” that she just had to buy the popcorn from him. Now, maybe you’re right. Maybe this was a great experience for this woman to have such a great privilege to talk to your son. But, I can’t help but think that your son was taking advantage of her. He wanted to win. He sold her something that she couldn’t use so he could win. He convinced her. Maybe he was charming, maybe he was pushy. Maybe she really just wanted him to go away. I don’t know.

But, I know you shouldn’t be bragging about this. Being “charming” to win something isn’t being kind to someone. There should be no pride in getting what you want from someone that may be lonely or an easy target. As you had a brother with a disability it kind of freaks me out that you don’t see this. Also, your a nurse so this really freaks me out that you don't see this  That woman was a person, not someone that Brock could use to reach a goal.
         You’re brother had a limited mental capacity. You and he were very different. He could never achieve what you achieved no matter how hard he worked. Maybe you set out to achieve a lot being the sibling of a disabled person. This happens, this feeling to overcompensate to make up for the grief your family felt for a disabled child. I can’t imagine what your family went through caring for your bother and then losing him. When Brock connected to your brother he was connecting to another person. Not just an object that he could use for inspiration, or a lesser person.   

Brock was an almost Olympian he is probably the most able bodied person there is. You say he can’t be a rapist because he has worked so hard for this. Brock’s ultimate goal is to be an orthopedic surgeon. Meeting these goals wouldn’t make him a good person. They would just make him physically and economically superior. They would give him power over the rest of us, much like you as a nurse.

 It would have been an astounding achievement to ultimately work with people with disabilities.  Some people say he can still be an orthopedic surgeon. I’m sure to you it would be just after all the suffering. They make bank. My middle class parents paid off orthopedic surgeons for years. But, that wasn’t your point. Your point was that Brock is kind to the weakest of people, those with disabilities.

 I hope he continues that kindness despite not getting all the reward he wanted for it because that is what actual kindness is. I hope he can learn to always be kind to people that have less power than him even when things don't go his way. I know you feel powerless right now and he does too. But, you actually still have a lot of power. I think that is why us people who have been truly powerless are so upset.  

When you are in the medical profession and working with us people with disabilities please remember we are people too. 

You mention how hard you all work and how Brock always wanted to make something of himself. He was so successful. Surely, working harder than everyone else should give you at least something. Some kind of pass. 

         Nope. Sorry. Mom to mom trauma victim to trauma victim I will tell you it is: LIFE IS NOT A CONTEST. Life isn’t fair. You can be working hard and following all the rules and you can fuck up and hurt someone one time—one time—and you still have to pay. I know all about this, life's unfairness. 

When I wasn’t much younger than Brock (high school) I started out golden with grades. Then had a lot of depression and PTSD. (I also had untreated ADHD.) I probably committed what you would think is the ultimate sin: ... I stopped working hard! 

This had consequences: I couldn’t go to some top tier college. I had to go to summer school a lot. People thought I was a loser. They didn’t give me any free passes because I had been working so hard for two years. Maybe this was the only time I was ever like over achieving Brock. Even with having surgeries I worked and worked to make sure I was ready for high school.  Part of why I stopped the hard work was because, like Brock now, I was traumatized and depressed. The reasons were different. I had trauma. 

Of course this has nothing to do with your son. Maybe I'm not so great??  Maybe I don't come from a good hard working family?? Maybe I come from the fast-moving city life you refer to?"

I'll tell you: My family loved me as much as you love your kids.  I come from the most suburban place you could imagine. The house I grew up in might have been bigger than yours. Granted my trauma is much more like the trauma of your son’s victim. Again we aren't holding a contest here. It's just... much of your letter to Persky talked about the Brock's hard work and his winning of contests and it kind of won Persky over, didn't it? Brock is only going to serve 3-6 months. I imagine it doesn't feel like a win. 

If life were a contest of who deserves more I would go with your son's victim. I would be phoning in for it would be her. I think about her all the time as a mother would think of a daughter, even though she has taken care of me more than I could ever care for her. Her letter was life changing. I almost don’t feel worthy to write to her or about her. You didn’t seem want to write about her either in your letter to the judge. I think you know, in this world, and in this time: her letter wins. 

But, life isn't a contest, and I'm glad because if it was people like me would always lose. People with disabilities usually lose contests. So do a lot of other people like people of color, drunk girls, old ladies with no teeth. 

You wrote about how Brock made sure he won first place for a boy with a mental disability during his time volunteering for the Special Olympics. You said he was so upset when he came in second once while trying to WIN for this kid with a disability. You do realize that if Brock always wins someone else loses, right? When he did come in second that day other kid working with a kid with a disability was able to win. 

 When Judge Persky let Brock off with 6 months and when you and your husband complain about his suffering you are saying his victim's life and safety is worth less than his life.  

Funny thing I bet you and I grew up in similar towns: 
Towns where people overlooked me and my friends' cries for help around sexual assault and bullying. People overlooked so many rapes where my friends had been drinking. Including my friends themselves. Maybe you think it was better this way? Maybe you had a "rough night" with a town hero you want to forget. Maybe not. Maybe you think that only happened to girls worth less than you. Here's where we may be different because I would NEVER think that. I know every victim could be me.  Maybe that's just because I'm not a winner. I can assure you that many other sexual predators will be getting away with their abuse. Some of them will be good people most of the time. All of them are responsible. The survivor is not responsible.

 I am worth something. Your brother was worth something. Every sick person you see is worth something. 

Every person is worth something and has a right to not be assaulted. 

It doesn't matter who their abuser is or what they have done before or after. It doesn't matter who the survivor is and what they have done before or after. 

The girl your son assaulted is my hero.   In some ways it makes me sad that my hero is fifteen years younger than I am. I know she is probably able bodied and upper middle class and white, like Brock. But she is so different from him. She is so different from you because when she wrote her letter and started her "small fire" she included everybody. She didn't talk about how she was somehow special.She was speaking for every survivor that couldn't speak. Every poor rape victim that can't write. Every one with a disability. Every one of color. Every boy, cisgendered, or trans person. All of us that that has been sexually assaulted or bullied and was made to feel that it was or fault. 

 It's the time of my daughter who won't have to grow up in the rape culture that I did. If I had a son it would also be the time of my son.

It's time for all of us to win even the losers that had to work hard just to survive. 

Sunday, June 5, 2016

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 14th 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 KeplinerAva JaeLeigh 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