Thursday, January 4, 2018

Freak Shows Aren't Over: A Review of "The Greatest Showman"

If you know me at all, you know how I love my movies. You know that Weight Watchers commercial with Oprah yelling, "I. LOVE. BREAD."-- yea, that's me and movies (and bread). And the only place better than the theater to watch a movie is on the couch under a blanket with 7 dogs and the fireplace on in the winter--but I only have 1 dog and no fireplace. I LOVE going to the movie theater. I will happily fill my purse up with snacks and pay some stupid $11.25 ticket price and drag my family and friends to see a movie multiple times at the theater if it makes me laugh, cry, and/or has good music. OKAY I JUST REALLY LOVE MOVIES.

But if there's something I love a little bit more than movies, it's speaking up for disability rights. As a member of a community that has been burned too many times by the media, I view everything through an advocacy lens. This movie/ TV show/ commercial/ musical/ book/ article is amazing for XYZ reasons but how could it better serve minority communities? How could it better represent diversity? How could it better educate the public on disabilities? I know this probably sounds like I'm really fun at parties, but it's my reality. We have the technological magic to entertain and influence and educate billions of people through mainstream media and it is simply not used in a way that benefits people with disabilities (and people of many other minority groups as well, need I remind you).

And yet here we are. By now, I am sure most of you have seen the trailer for The Greatest Showman. If you've somehow managed to miss the trailers and the Facebook adds and the Instagram adds and the Amazon Prime boxes and even the world's first live movie commercial, I have attached the trailer for your viewing pleasure. I don't even have cable and I have been overwhelmed with the amount of advertisement exposure I have had for this movie. As if they knew I'd have something to say about it.

I can't lie, at first glance this shit looks magical. What is better than the beloved underdog story of the white man who overcomes adversity and then... oh... becomes a savior to the disabled? And then mix in Zac Efron and fireworks and elephants and a complicated romance? I had a lot of feelings after watching the trailer for the first time. I instantly knew this was going to be a movie I would go see 3 times at the theater just for the music alone (and Zac Efron, if we're being honest). But then I started getting sweaty and nervous and wanted to throw up a little bit because... you know... PT Barnum is a garbage human being? 

Or maybe you didn't know that. Because, like most other things that do not benefit the rich, able-bodied, white man, the history of disability rights has been swept under the rug and no one wants to talk about how Pure Trash Barnum exploited individuals with disabilities for his own fame and fortune because that just might make the circus seem a little less... magical. 

So if you're not caught up on your circus trivia and disability rights history, consider this a crash course. (I dedicated 12 weeks of research during my senior year at Augustana to this very topic, and if you are interested in reading my 30-page paper, I will attach it via a Google Doc link below). 

In the 1830's, PT Barnum turned up unsuccessful in the museum business and decided that odd-looking humans would attract a bigger crowd. He was right. People love to stare. So he began buying people with disabilities-- literally trading families money for their loved ones that they had been hiding away from society (the most common reality for people with disabilities at this time was institutionalism). The first person he purchased was a slave named Joice Heath, a black woman who was blind, who he falsely advertised as a nurse of George Washington. Next was Charles Stratton, a boy with dwarfism whom Barnum nicknamed "Tom Thumb" and directed to sing and dance for audiences. Sometime later was a woman with dwarfism named Lavinia Warren.  Then a woman with a beard. An overweight man. And the list goes on. Throughout his career, Barnum purchased hundreds of people with disabilities or other unusual life situations and forced them to perform as part of what he called "The Greatest Show on Earth" but what was truly just an opportunity for the rich to pay money to gawk, stare, and laugh at odd people who had been previously locked away. Barnum is also responsible for coining the term "midget" to describe people with dwarfism who performed in his freak shows. Previously, the word did not have a negative connotation, as it originated from the term "midge" which is a specific species of fly. But 200 years later, that word still stings like a bee. 

As you can probably imagine, the film absolutely does not address the entire truth about PT Barnum. In my honest, humble, and non-professional-movie-critic opinion, it depicts purchasing individuals with disabilities and profiting off of their performances as a relatively normal thing to do. Sure, there are people who call him out when he tries to lie and advertise his performers as even MORE odd or unique, but not once does anyone actually say, "Hey, maybe this is actually really awful and inhumane." Even after profiting off all of these people that he has exploited, Barnum leaves them behind when he finds a beautiful, able-bodied opera singer to manage. Like, he quite literally uninvites his performers to a party and shoves them out the door because he is embarrassed by how they look--because ugly people are only important when they make money, am I right?

After a series of events like his circus burning down and his wife leaving him and all of his performers hating him, I was left with a small bit of hope that the movie would end with proving how awful PT Barnum was, but alas, he manages to redeem himself and come out on top. He feeds his performers some fluff about how they're beautiful and important (and of course the man with dwarfism is used for comedic relief by walking across a bar top and sitting on Barnum's ring leader hat) and he rebuilds his circus and wins his family back and the movie ends with a loud, flaming display of lions, tigers, and people with disabilities.

It didn't really surprise me when the entire theater cheered and applauded at the end of the movie. Some people even gave a standing ovation. As an able-bodied person, I think it would be really easy to view PT Barnum as a brilliant man who-- even though he had bumps along the way-- gave job opportunities to people with disabilities and created the spectacle of the circus. And even if you have the ethics and empathy to know that purchasing humans and profiting off of their performances made PT Barnum an awful person, it would still be easy to enjoy this movie and convince yourself that circuses are different now.

Sure, maybe we don't buy people with disabilities off of their parents or abuse animals to train them to jump through rings of fire as often as we did in the 1800's. But from the comfort of your own home, you can now stare at a wide variety of human oddities without guilt or shame with just a click of your TV remote. Want to stare at fat people? There's a TLC program for that. Want to stare at people with dwarfism? There is quite the variety of shows for that. Want to stare at someone odd that you see in public for a little bit longer? Snap a picture with your cell phone. Want to watch people with dwarfism fight each other? Head over to your local entertainment hall and purchase a ticket for a night of Micro Wrestling. Want to see how far you can pick up and throw a person with dwarfism? Your local bar might be hosting a Midget Tossing contest. Do you want your Christmas work party to have "real elves" serving the appetizers? I can get you the company's contact information who recruits people to do that.

We can't continue to live under the pretense that circuses are in the past. They have just manifested into other forms of exploitation. And that's not really an improvement. People frequently argue that individuals with disabilities choose these jobs for themselves and are thus responsible for the negative attention they receive. I disagree. What can you expect from those who are raised in a culture that normalizes staring and laughing at odd people? What can you expect when there is an opportunity for Hollywood to produce a movie that sheds light on the awful impact PT Barnum had on the disabled community and they use the line, "They're laughing at us anyways, might as well get paid." You can expect to overhear people in the movie theater bathroom laugh about how they "can't believe a real live midget came to watch a movie about the circus." It's 2018 and we can do SO much better.

Overall, I know that my non-professional-movie-critic opinion will not align with everyone with a disability. And I can't ignore the fact that this movie also tosses around issues with racism and classism, but I just don't feel I have the same education and experience to talk on those topics as I do disability rights/ableism. If you have differing opinions and perspectives about this movie, I would love to hear them, as I still have a lot of feelings about this whole experience that I have to sort through too. But for what it's worth, here are my thoughts:

Am I disappointed that the movie ignores a very critical piece of history that is still relevant today? Absolutely. But can I ignore the fact that, message aside, the movie was actually a theatrical masterpiece? No. Friends, the music was so good. SO good. And I'm not sure if it deserves to win Best Picture, but I can see why it was nominated.

If you haven't seen it yet, I would recommend that you do. (And of course bring your own snacks!)  Download the album on Spotify. Make "This is Me" your 2018 anthem. Swoon over Zac Efron. But promise me that you'll do your research. If taken at face value, this movie has the potential to celebrate and honor someone who was actually a really awful person. But if we do our research and start conversations and dust off the history and truth that has been clouded with fireworks and elephants, we have the power to change the narrative.

My Senior Inquiry Project

Tuesday, June 27, 2017

Learning to Let the Light In

Five years ago, as an angsty little high school graduate, I created this blog as a platform on which to talk about my life as a person with dwarfism. At that time, I needed a place to vent about all of the ~problems~ I had, because when you're stuck living at home with your parents in Small Town, Illinois and attending community college, every little ~problem~ felt like the end of the world. And then there was my disability. WOE WAS ME.

Anyways, it served me well for a while. I got to meet so many great people who read my blog from all corners of the world. And whenever I was feeling a little needy, I could just log on and complain about my life, and y'all would flood my inbox with your kind words. The attention I got from my blog brought me a really warped sense of confidence and righteousness, and I ended up using it to serve my own needs more often than educate other people about dwarfism. College came and went, and while I tried to use my blog to document the growth and change I was experiencing, I lost sight of my purpose. Those years brought some truly dark times, and because I was getting a lot of attention for my disability, I found it easy to also blame my disability for all of the things that were wrong. Over the last several years, I let myself become a very bitter person and my blog reflected that. If you scroll back now, most of those posts are gone because I'm learning that it's ok to not like who you used to be.

Since I last logged on here, I have been diligently working through a lot of personal things. But I decided to come back and try this again as a part of my journey of forgiveness of myself and others. I am working on developing a more positive identity as a woman with a disability. Sure, awful things do and will still happen, because we live in a really broken world that does not value people with disabilities. And awful things do and will still happen because of a million other reasons in my life, no thanks to my dwarfism.

But good things happen too. Like, really, really good things. So I want to share them with you. Not to boast or build some shiny fa├žade that I've got my shit together. I just hope to change the narrative. Because if there was anything I needed growing up, it was to see a woman with a disability who was happy with the things that went right in her life. So at the risk of embarrassment, I'm willing to share, should it be a light to someone else. And if no one reads this but my mom, well, then I'll do it for myself.

If you signed up for email alerts from my blog in 2013 (seriously, y'all get a gold medal because I've been weird) or you met me within the last few years and had no idea I had a blog, I hope you stick around because I think good things are coming. Recently I completed a challenging clinical placement, traveled to Mexico, and have met some truly incredibly people-- all which have shaped my journey into coming home to myself and settling in with my identity as a woman with a disability, among other things. I can't promise that I won't ever talk about the bad stuff, because that does have an important role in advocacy. But I finally finally finally feel as if maybe life has hit me just enough times to teach me that those cracks are where the light gets through.

I can't pinpoint the moment things changed. I don't know the recipe, but it happened somewhere between a lot of coffee, poetry, and really forgiving friends. If you've figured it out, I celebrate with you. If you haven't, I've been there, and your feelings are valid. But the sunshine feels good. And I promise that no matter how unfair life feels, it's coming.

Goodbye for now. Love to you. Take care of yourselves.

Friday, August 7, 2015

5 Things You Absolutely Do Not Get to Say to Me

If you know me at all, you know that I'm a peacekeeper. I'm pretty quiet and I typically try to fly under the radar-- especially in public. I hate causing a scene, because I know that my appearance alone draws enough unwanted attention, so I usually try to balance that out with a calm personality. However, I use the words "typically" and "usually" because there are always exceptions. And this is one of them. 

Since turning 21 earlier this summer, I have come to learn about the whole new world of the bar scene. Like any other senior in college, I enjoy going out with my friends on weekends and catching up over a drink or two and dancing. Always dancing. But along with the fun comes a lot of intoxicated people and I know all too well the results of combining alcohol and dwarfism-- or any difference for that matter. At the beginning, I learned to just accept people's rudeness and move on and try to focus on having fun with my friends. My parents raised me to not let my disability stop me from enjoying life and going to the bars is definitely part of enjoying life-- can I get an amen from someone in the back? 

This whole new experience has brought a lot of ups and downs, but for the most part the good has outweighed the bad. And I believed it always would. And then last night happened. Some friends and I set out with the "work never ends but college does" attitude, determined to have a great Thursday night. But it was ugly, due to some unwanted and rude people saying very inappropriate things. I have spent the day reflecting on the things that happened and that I should not have to accept. 

Here are the 5 things that you (read: probably not actually YOU, but people in general) do not get to say to me anymore:


Not one single conversation that has started with this line has ever ended well, yet people keep using it. On any given weekend night, I hear this line shouted from across the dance floor or bar as a sad attempt to gain my attention. Don't even bother asking, because no, you cannot take a picture of me to put on your snap story. I came to have a drink with my friends and have some fun after a long week of work. I do not care to hear about how much you love Little People Big World. And no, for the love of Jesus himself, I am not a cast member from Little Women: LA. Also, might I add that there would be a problem if I entered a bar and approached a group of people, shouting, "I LOVE BLACK PEOPLE!"? It is not-- and never will be-- ok to refer to people only by their appearance. When you acknowledge me only for the fact that I am a person with dwarfism and you, for some reason, think that's awesome, then you have objectified my physical disability to mean more than the other things that make me who I am-- my personality, my dedication to my education and future career, my friendships and willingness to meet new people, and probably my really embarrassing laugh. Yes, I do wholeheartedly believe I am an awesome person who… also has dwarfism. You can leave it at that. 
On the other hand, if you enter the bar, see me from across the room, and run towards me yelling, "Oh my god it's Courtney!!!!" followed by a hug and more screaming, chances are you're one of my sorority sisters and we haven't seen each other for like the last 18 hours, so we're about to take a photo for Instagram. That's fine. 
Otherwise, goodbye.  

Alternative option: Wave, ask my name, and come dance with me and my friends. We are some great people who know how to have a great time and it doesn't really matter that I am a little person.

#2 "You're every guy in here's dream." 

Nope, I'm just going to stop you right there. I don't want to hear about your fantasies of having sex with a little person-- or midget, the term you probably used. You only feel that way because of the disgusting things that you have seen in the media. Having sex with someone who is smaller than you will not make your penis appear larger. Your comments are objectifying, offensive, and way beyond intrusive. In response to any variation of this line, I will probably just turn away from you and towards my friends, because I really suck at coming up with something to say to your face. Please don't offer to buy me a drink if I've already stopped conversation, because then I'm really going to have to find something to say to make you leave and you won't like it. You'll get a little butthurt and that leads us to #3. 

Alternative option: If you want to approach me at the bar and tell me that I'm beautiful, cool! I already know that I am, but it doesn't hurt hearing it respectfully from someone else. Introduce yourself. And if we vibe well and you care to offer to buy me a drink, I'll probably accept. I'm not scary. 

#3 "What, you don't like me because I'm (insert a race, religion, or other identifying group here)?" 

Yes, exactly! I'm trying to end this shitty conversation with you because you're Mexican! No, actually, I don't like you simply for the fact that my asshole meter is alarming right now and you stink of complete, utter bullshit. I like to consider myself a very friendly person. I will carry on a conversation with literally anyone-- people waiting in line at the grocery store, my pharmacist, cute elderly people at church, the mailman, you name it. I got that trait from my mom, the lady who will tell her life story to anyone who will listen (even if they didn't want to hear it). THEREFORE. If I am acting in anyway that indicates that I do not want to talk to you, you probably did or said something to piss me off, whether or not it included points #1 or #2 and NOT because you have purple hair, are Atheist, speak a different language, are wearing a Packer's jersey, etc. 

Alternative option: "I'm very sorry that I offended you. Can you tell me what I did wrong so that I may fix it?" I'm a super forgiving person and I understand that some people make mistakes due to being uneducated. I'll give you the benefit of the doubt if you seem sincere.

So if you're like my mom, you've probably read this far and are thinking, "Gosh, Courtney, maybe going out to the bars is not the greatest idea. How about you find somewhere safer to hang out?"

I'm just going to hit you back with a big NO. Because I have heard this line too many damn times:

#4 "Well, that's what happens at bars." 

No. I refuse to believe that. I will not believe that. Saying such a thing puts the blame on the victim-- ahem, me-- suggesting that I shouldn't go if I don't want to be offended or violated. As a 21-year-old female college student, I have every right as the next person to go out with my friends on the weekend and grab a couple drinks, dance, and maybe even talk to a cute guy or two, then eat leftover pizza for breakfast the next day with my roommates and binge watch Netflix as we recover. 
So, no, the things I have experienced is not what "happens at bars." That's what happens when people are uneducated, rude, and haven't been raised by their mamas to love and accept other people for their differences. I won't stop going out with my friends because of my bad experiences. I do not have to sacrifice my fun weekends because of the actions of others. Instead, I will fight against it and hope that maybe one day, these people will understand that I don't have to take their shit.  

Alternative option: "How about we try a new bar and see if we can meet some new people elsewhere?" You can't run from bad experiences, but I am always up for trying something new. Even better? "Hey, I know when we go out tonight, there may be some rude people out there, but we are still going to make it a fun night." Damn right we are.  

Last, but definitely not least, here's the kicker of them all. As my friends and family and people who love me, you have probably said this to me as an attempt to help, without realizing that it's not helpful at all… but that's ok. We're all learning. In the future, just try to please take this off your List of Things to Say to Courtney When She's Upset:  

#5 "Don't let it bother you" / "Those people don't matter." 

It bothers me. That's why we're here. That's why, at 10pm on a Friday night, I'm laying in bed writing this instead of hopping on the bus to The District to order another Funky Monkey at Daiquiri Factory or dancing on the speakers at 2nd Ave. I'm not going out tonight. I'm speaking out tonight. 
Unless you are a 4'2", blonde hair, blue eyed, 21-year-old, female, Communication Sciences and Disorders major at Augustana College in Rock Island, Illinois with Achondroplastic Dwarfism, YOU do not get to tell me that I shouldn't let it bother me. Unless you are Courtney Lynn Simross, YOU do not get to say that those people don't matter. You've never cried on the bus ride home because you overheard guys laughing about how they'd love to "f*ck a midget" but that they'd make sure to wear a condom because they "don't want one of those kids."   

Alternative option: "Yes, this hurts and it's unfair. What are we going to do so that it hopefully doesn't happen again?" Hint? Education and awareness. Always. If you love me, you'll join me in this fight. It's not fun. But I know that one day people will catch on and stop being so rude. One day.     

Tuesday, April 22, 2014

Please Don't Call Me an Inspiration

For whatever reason, people have always felt the need to tell me how inspiring my life is.
How I "overcome so much."
How I am "so brave" for doing this or that.
How I am "always smiling despite the hardships."
Or how I am "so strong."
(And--oh wait, my personal favorite…)
How I "live just like a normal person."

Please believe me when I say that I appreciate these comments! I know that the person means well, even if that's not how it came out. Sometimes I want to say something back like, "Thanks for noticing!" Or, "I'm glad someone understands!" Or, "Oh shoot, do you really think that of me? I'm flattered!" 

But most of the time, I would just like to say... 

No. Thank you, but no. 

You see, I was not born yesterday. I know that when people take the time to tell me how "inspiring" my life is, they aren't just referring to the grades I work for or the new mile time I just beat on the treadmill. (Believe me when I say my mile time is anything but inspiring.) I know this because just about anyone can be smart or run fast. Instead, I am apparently "inspiring" because-- oh, that's right! I have dwarfism and don't always act like I do.

To be more specific, here is collection of some of these comments I have received in just the past few weeks or so:

"We think you are really brave for going to Augustana, despite… everything, you know?"
"I look up to you so much. Well, not literally. But you know what I mean."
"I don't think I could be as happy as you are if I was in your shoes."
"I'm surprised to see you here (a party). I wasn't sure if you did these things like everyone else."
"Courtney I am so happy to see that you're not letting your dwarfism stop you from joining a sorority."
"I always tell my friends how awesome you are for being a little person and still doing everything like us."
"You sure don't dress like a little person."
"You're so strong."

I guess to the average person, the diagnosis of dwarfism also implies a terrible life. As if I was expected to stay in bed all the time, sheltered from the real world, and be hand-fed by my parents. School isn't necessary, forget being social and making friends, parties are a definite no, what is a car and how would I ever drive one-- just no, dwarfs can't play sports, cute clothes are impossible to find, I should just blame God for this because why would I have faith in someone who made me this way. I have heard it all.

Basically, I should have given up a long time ago.

But wait. I didn't, so…. I'm an inspiration!

No. Please stop. Just no. 

Because do you know what happens when you call me inspirational? You put me on this unnecessary and unwanted pedestal. Believe me when I say that I do not need another thing to separate me from the people I so desperately want to be associated with. Thank you, but I don't want to be seen as better than anyone else. I don't need to rise above. I just want to walk along side the rest of you. I am not extra special just because I do things despite my dwarfism. Please forgive me for not wanting to be treated differently, because I don't see myself that way.

Also, please forgive me for not wanting to be the strong one all the time. Because if I've learned anything while being "inspirational," it's that no one ever asks how you are doing. You're just expected to have your shit together.

Don't get me wrong. 99% of the time, this girl is on fire. But the hot mess that makes up that last percent is nothing that I should be inspiring anyone to be.

Yes, I have earned every single thing I have in life. I have sweated and cried and considered giving up a few more times than I would like to admit. I have taken risks and faced my worst fears like it's my job. I have learned to force a smile when I feel anything but happy, and I have been polite to people who have destroyed me with their words. My faith has been tested and I have had to argue the existence of things that I sometimes can't even see for myself.

But do you know what? There is someone out there whose 3rd Fibroblast Growth Factor Receptor on their 4th chromosome is not mutated, doing the same. damn. thing. Where is their round of applause? Where is their award? Oh wait, that's right. That would just be considered "normal" behavior because he or she is a "normal" person. (I puke a little bit in my mouth every time someone says the word normal. Stop trying to make normal happen. It's not going to happen!)

Yes, I have dwarfism. But I still can attend a prestigious college, maintain good grades, be an active member of a sorority and many other clubs, have a job, know how to have a good time with my friends, and keep a positive attitude, like anyone else. I'm not trying to be inspiring or amazing or extra special.
Just happy. 

Tuesday, June 4, 2013

Sooo, like... What happened?

To the outside world, I am different. Something is wrong with me. I am not normal, and that can't just be. People can't just settle with that. They need an explanation. They need a reason. Simply existing is not enough. Something must have happened. 

I can always sense when this question is going to surface. Someone who I am meeting for the first time is having troubles with wrapping their brain around my appearance. They stumble across the words like "disability," "short," or "difference," but then out it comes like word vomit-- "So.. what happened?" 

I didn't eat my vegetables.
I sneezed too much as a baby. 
A heavy object fell on top of my head. 
I'm under a spell. 
I sold my growth plates on the black market.   

Actually, nothing HAPPENED. I feel like breaking out in Lady Gaga's "Born This Way" when someone asks that stupid and borderline-rude question. Asking what happened infers that I WAS normal, and now I am not. This actually reminds me of when a doctor of mine met me for the first time, reviewed my chart, and said: "So I notice that your height seems to be a little shorter than average. Has it always been this way, or is this recent?" 

There are a million better ways to ask me what happened, besides "What happened?" How about...
"Is there a reason for your short stature?"
"I'm curious. Would you mind explaining your condition to me?" 
"Is your condition genetic?"
"Is there a specific name for your disability?" 

Any variation of any of those questions will convey to me that you would like to know about my dwarfism. I honestly understand. I get it. Some people have never experienced dwarfism outside of fairytales and Disney movies. I may be the first little person they have ever seen, and I am more than willing to educate them. Believe me, after 19 years, I have the speech down. 

I was born with Achondroplasia, a form of dwarfism. Over 200 types exist, and mine is the most common. I have short arms and legs, an average torso, bowed legs, limited extension of my elbows, and other minor joint issues. My family is average stature, and actually about 80% of dwarfs are born into average families as well. During conception, a mutation occurred on Fibroblast Growth Factor Receptor 3, which is located on the 4th chromosome. On average, this affects about 1 in every 14,000 births. I can pass my condition onto my children, and those chances vary depending on who I have children with. I live my life similarly to anyone else and can do just about anything I want, with occasional accommodations. 

That's what happened.