We Are Visible: An honest testament to overcoming, thriving with Ehlers-Danlos Syndrome
By: Katy Brennan
When I was asked to review, We Are Visible, a forthcoming documentary about Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder characterized by joint instability, organ fragility, and more, I was elated. I, personally, was diagnosed with EDS over four years ago, and until now, I was only aware of some recent shorter documentary series and full documentaries about related disorders (though I may have missed something). For this reason, I had extremely high hopes for the film, and luckily, it did not disappoint.
We Are Visible follows the story of seven individuals, including the narrator and creator of the film, as they navigate different experiences with EDS. While each individual brought a unique perspective in their age, country, and/or type of EDS, the theme of strength in community was present throughout the film, unifying the storylines and speaking to me personally due to my work at Diversability.
The film begins with dialogue and footage of Karina, the film’s creator. She explains why she decided to launch this project, explores the physical toll it took on her, and previews the six journeys we are about to see. I was initially expecting the film to cover the journey of the six individuals, without much focus on Karina, but I was pleasantly surprised to see her active role in the documentary. She later explains in the film that she did not originally intend to have such an active role in the footage itself. However, as people opened up to her, she felt the need to open up as well. And, in my opinion, she absolutely made the correct decision.
Karina explains early on that despite the physical and emotional toll the documentary took on her health, the work is always worth it. Whether she is writing about her experiences, connecting with others online, or filming for this film, her advocacy gives her life a new purpose. Throughout the film, this sentiment is shared by various other EDS patients. As someone who personally became involved in chronic illness and disability activism by documenting my journey with EDS online, this section really spoke to me. Despite the Ehlers-Danlos community stretching across the entire world, through Facebook groups and online platforms, myself and thousands of others have been able to connect. When I was first diagnosed, this was critical in gaining access to proper resources, learning about my new limitations, and feeling a little less alone. The impact that experience had on my life is why I continue to focus on building and engaging in online communities, like Diversability, today.
One of the other key points that the film really touched on was the idea of variability. Often, people who are not chronically ill do not understand that health can truly vary from day to day. I personally have gone from crutches and a neck brace one day to no mobility aids the next, similarly to many of the individuals filmed. And, considering society’s picture of disability as a permanent, continuous state, these changes often lead to a lot of disbelief and bullying. By showing over multiple days how the health of many of these individuals is incredibly unpredictable, this common myth is dispelled. Further, while the film’s focus is on EDS, the extensive discussion about ambulatory wheelchair users — individuals who use a wheelchair but can walk short distances — can apply to any illness or disability. This was discussed within a grocery store, a common setting for these stereotypes or myths to come up, further strengthening the point, and providing a visual account of what this may look like. I was pleasantly surprised by this discussion because it made the scope of the film much larger, and is one that I would recommend to anyone with a chronic illness or disability.
I could continue on and on, detailing the similarities between my experiences and this film, but I do not want to spoil it or stray too far from my original purpose. However, I do truly recommend attending a screening of We Are Visible or accessing a copy online when it is available to all. The focus on community and these important discussions about common myths and beliefs about disability apply to all of us. Whether you are an ally or an individual with a disability yourself, I do encourage you to screen the film when you have the chance. It is truly a testament to what we, as people with disabilities, experience and overcome on a daily basis.
We Are Visible is currently only being screened at in-person screening events. A list of upcoming https://www.we-are-visible-film.com. To set up a screening in your community, you can contact the director through this form https://we-are-visible-film.com/contact/. The film will be available in the coming months to stream online.