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Karina, a woman with short, brown hair and a pink flower in her hair smiles slightly. She is wearing big, black glasses and a red jacket

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose. 

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did! 

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and therefore  see it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people. 

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way. 

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.

 

Pencil like drawings of all the faces of the main contributors of We Are Visible.

We Are Visible – Open Your Eyes

 

Details about the Film

SYNOPSIS:

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

We Are Visible

SCREENINGS of the film:

In January, there will be screenings in Rhode Island, Colorado, and a larger one in Orange, California. If you want to join any of those screenings, have a look at the Event page: https://we-are-visible-film.com/events/

Duration: 

69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

More about the filmmaker: www.karina-sturm.com 

Trailers

Trailer 1

https://vimeo.com/349770539

Trailer 2

https://vimeo.com/349770866

Tailer 3

https://vimeo.com/348046371

 

Find out more:

IMDb

https://www.imdb.com/title/tt11100592

Official Website:

https://we-are-visible-film.com

Facebook:

https://www.facebook.com/karinasturm86/

 

Flyer for 'We Are Visible' featuring black and white pictures of the main contributors, all women and two children, as well as film award laurels, and the synopsis of the film.

We Are Visible – A film about people living with Ehlers-Danlos syndrome

Last night, I had the pleasure of attending a beautiful event honoring one of my favorite institutions. I want to preface what I write here with a disclaimer that our keynote speaker was incredible, inspiring, and has a story to tell that I think is as important to tell as any of ours. I think the opportunity and the honor of sharing our stories are both critical components in improving our empathy with others and also in improving our own lives–and that is why I go out of my way to write and speak about my own experiences in the mediums I do.

BUT, I walked away from last night and couldn’t stop talking about the speech with my fiance. I couldn’t stop thinking about what it would mean in the minds of people who lack the firsthand experience of losing the ability to do something, of being chronically ill, or having medical professionals tell you when something is no longer safe for you.

You see, our speaker is an amputee who lost his leg. His speech centered on having been told by his doctors a laundry list of things he could (or should) no longer do. And then, he climbed Mount Everest. Amazing, right? I mean, honestly, it’s insane. I have absolutely no concept of what it would be like to climb a mountain considering there are days I can barely convince my legs or my spine that we should work together to climb INTO my car or up a few stairs, nonetheless the highest point on Earth.

He said at one point that if you had it in your heart and your mind to do something, that’s all it would take–then you could do it. I looked around the room at that moment. I saw the glean of the beautiful lights in everyone’s eyes. I know most of the people who were in that room and I know they are primarily able-bodied individuals. I could not get out of my mind for even a second this idea that if I WANTED something badly enough, that was all it would take for me to able to do things again that my medical professionals tell me I cannot (or should not) do any longer. I don’t think this speech was meant to imply this. I guarantee if I sat down over coffee with him, we both have the frame of mind and experiences to know the difference.

So, where’s the problem? The problem is in those shiny eyes. The problem lies in the people who have no concept of what it means to be limited by your body–and that there is a big difference between setting your goals based on what your body CAN do and giving up on even having goals because your body doesn’t work the same as others–or like you want it to.

Earlier this week, we had a snow storm. It’s April, so that in itself is ridiculous, but the bigger issue came about when the snow around our apartment hadn’t been removed. This week, I’ve been using my cane and my crutches to get around because I’ve been dislocating my knees and ankles with such frequency it’s necessary for my own safety. So, when it came to be 4pm and the snow from the preceding day still hadn’t been removed, I made contact with the people in charge of our snow removal. I attempted to explain that I wouldn’t be able to safely access my apartment with the snow there. I said “I have a disability and I need to be able to get outside.”

And then, I was told, “There are other disabled people who live here and they’re more understanding than you–and some of them are even in wheelchairs.” I was filled with outrage and disgust for a multitude of reasons:

  1. The experiences of other disabled people do not define what my experiences are. Just because you haven’t heard from others with disabilities does not discount my need.
  2. A wheelchair is not the single indicator of a disability. That wheelchair does not by default make that person the sole indicator of disability access.
  3. People with disabilities are no more meant to be treated as a SINGLE person than any other group–racial, gender, sexual identity or otherwise.

So, when I heard this speech and I saw the reactions, I became more concerned about the experiences I’ve had and continue to have. I cried when we got home thinking that I already have to explain why I’m parked in a handicap parking space and now, when I’m limping into the grocery store with no visible mobility aid from the parking spot they’ve already decided I don’t need, I have the additional pressure of “Well, he doesn’t have a leg and he climbed a MOUNTAIN, so why on earth can’t you get groceries without the handicap space?”

As much as the message that believing in your mind and wanting in your heart enough will make you achieve what you want to achieve is positive and inspirational, it simply isn’t reality for many people with disabilities–and it’s dangerous when an able-bodied person applies that standard. I have wanted to RUN a half marathon for years, but when I got my diagnosis and started working with my therapist and doctors, I knew that goal had to go away. It had to be set aside. It is dangerous and reckless and would potentially harm me for the rest of my days. I CAN set a goal of walking a mile for EDS Awareness next month–and that will feel to the new me just as impressive an accomplishment. Accepting your reality doesn’t make you weak. Sometimes, it makes you smart. Sometimes, it means the difference between having a moderately functional body until you are 55 and wearing your body out before you hit 30.

I can’t take the list of things my doctors tell me not to do and throw it out the window to climb a mountain. It shouldn’t take doing that for others to decide I’ve made the most of my disability situation. I think what he’s done is amazing and should be applauded. I think his accomplishments are more than deserving of recognition. I think he deserves every standing ovation and round of applause he’s received and will receive for the rest of his life.

BUT, if you are chronically ill or disabled and you do what your doctors recommend, you are allowed to celebrate the accomplishments that don’t earn those medals. You are entitled to recognize that for some people with genetic conditions, wishing and wanting and hoping and believing can’t possibly change DNA–and that might mean that maintaining gainful employment and a happy family life FEELS like your Everest. You can find Mount Everest all over the place and you can decide that other goals mean the same thing to you–and you don’t owe it to the able-bodied world to climb anything. You experience in your daily life what most can’t comprehend–and that alone makes you worthy of telling your story–tell it, with or without a mountain.

“I want you to write about this.” He supports me every step of the way…but he’s never going to let me climb a mountain.

Together we are stronger!