#howdoyouseeme

The video begins with Olivia Wilde, a white, able bodied actress, doing all these lovely things in her life. She runs, she hangs out with her family- she looks happy, healthy, and content.

“I see myself as a daughter, a sister, a best friend. As a person you can rely on. I see myself meeting someone that I can share my life with. I see myself singing, dancing, and laughing, until I cannot breathe. And also crying sometimes.”

The voiceover continues throughout, a message of possibilities and inspiration, and at the end, says “This is how I see myself. How do you see me?” And at this point, you see the only shot in the entire video of AnnaRose, the girl with Down Syndrome who was speaking.
Now, the message is that you should see the person first, before the syndrome, and to ask the viewers how they see a person who has Down Syndrome- as a person first, or as the disability. And it’s an extremely valid question.

However, this video, designed to promote World Down Syndrome Day, has a major flaw.

AnnaRose could have done all of those things herself. By putting in a thin, white, famous, able bodied actress to replace her, you erase the disability. Do disabled people need to see themselves as able-bodied, in order to be seen? Do we need to be seen as able bodied, in order to be seen as people first? Can we only be successful, beautiful, happy- if you first completely erase our disabilities? This actress with Down Syndrome is capable of doing everything you see an able bodied actress doing. Why should she have to first erase her disability in order to do so?

This is an assumption that is deeply engrained: that someone with a disability could not possibly be happy or whole.

And it’s dangerous.

A letter to my disease

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Dear illness,

I never knew that you would come for me. We all know about illness, it is the elephant in the room. Yet somehow, we always assume it will happen to “someone else”. The trouble is, we are all “someone else” to the rest of the world. When I joined the ranks of those forced to shoulder you, I realized I couldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life, supposed to be healthy and free. No one who has not tasted this world for themselves imagines that someone who is this young should be sick. You aren’t fair. You aren’t right. But you are what happened.

And my life today is very different than that of my peers- but that’s okay. Because I have learned to savor the moments where I can breathe without pain. To walk when I can, and when I can’t, that’s okay too. You have taught me that sometimes crying is the only way to heal.

You took so much that I would give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more. And I hate you for that. But because of this, I am grateful for the little things. In a few years, those are the things I want to remember. How despite you, I found hope, and happiness, and joy. I have learned to find the silver linings, even when it never seemed to stop raining.

You’ve showed me how fast life changes, but you’ve also shown me how to live. That sometimes, you should take the hurt later if it means you get to walk on the beach. That when you are living seconds at a time because of how much it hurts, remember that you will make it out the other side. That live isn’t measured in years, and months, or even days, it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you, I know what it is to be brave.

 

Sincerely,

The girl who’s kicking your ass.

This was also published on The Mighty.

Why I Appreciate The Fault in Our Stars and Red Band Society

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I belong to a community I never wanted to, but that has changed my life in ways I cannot even express. I am part of the group of young adults and teenagers who have chronic illnesses, and are fighting these diseases constantly. Unfortunately, as with any situation, it’s difficult to understand what someone is going through if you haven’t gone through it. I met my best friend through my illness. I have also met so many other fabulous people who have helped me through this journey. I read The Fault in Our Stars by John Green before and after I got sick, and empathized greatly with the main character, Hazel. I watched the movie when it came out in the theatre with my best friend. Similarly, I was ecstatic when I discovered that there would be a TV show, (Red Band Society by Fox) about teenagers in the hospital. I was in the hospital when it came out, and I watched the episodes beneath the glow of my IV pole.

 

However, not everyone in the chronic illness world shared my views. Many chronically ill teens and young people were upset by the glorification of illness, and how it forms a very untrue portrait of chronic and critical illness in the public eye. And I agree- the TFIOS movie and Red Band show are both inaccurate. Devastatingly so.

 

The characters in the Red Band Society make the hospital look like a party, complete with beer, rooftop fires, and romance. I’ve spent over 5 months in the hospital over the past twelve, and (spoiler alert) I’ve never been to an awesome rooftop party, and I’ve never fallen in love. The Fault in Our Stars, especially the movie, makes terminal cancer look like a literal walk in the park, complete with dream vacations and a star crossed love story.

 

Yes, there is a lot of inaccuracy and drama in these fictional stories about illness. But what are we supposed to expect? This is Hollywood. Everything is dramatized to look much larger than life. There are very few movies and TV shows I have seen that aren’t glorified. I hate to say it but it’s true: it’s hard to sell a story that shows real life.

 

But what is the alternative to having these stories be blown up larger than life for the big screen? Not showing them? Keeping everyone who doesn’t have a link to these diseases in the dark? So many people have no idea that young people can get sick. Teenagers are supposed to be at the pinnacle of health, the topmost point of physical excellence. Even doctors sometimes seem to have difficulty believing that I, a sixteen year old, am totally dependent on a feeding tube for survival. Yet I am not alone in my situation. Shows like The Fault in Our Stars and Red Band Society spread awareness. They show people that there are teenagers who are not healthy. They show that there are diseases that modern medicine cannot fix- and we need awareness to find solutions.

 

This article was also published on The Mighty.

Welcome!

Welcome!

 

I’m a student who has been dealing with chronic illness for almost three years now. I love superheroes, bright lipstick, and loud music.

My goal is  to translate my own experiences into something that can help others. This blog is one way I hope to do that. I also work with several organizations that hope to make a real difference.

My life has changed in immeasurable ways because of chronic illness, but it is not all I am. It is not all I will be, and my future is not defined by it.

Whatever demons you are fighting today, know that you are stronger than them, and that you are not alone. And if you are, like me, an actual mutant, hey, maybe there’s a place at Xavier’s school. (A girl can dream, right?)

Kudos to you if you caught the reference.