Published: 22/01/2020

We Are Visible: Why I made a documentary about EDS

In 2018, I started to study in a journalism degree in Edinburgh, Scotland, and immediately knew that I wanted to produce a documentary film for my MA thesis years later. I had never filmed before and didn’t know much about documentary filmmaking, but I just hoped everything would fall into place if I put all my heart in it. And it did!

With my film ‘We Are Visible’ I wanted to produce one of a few documentaries giving a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. Since I belong to this community as well, I 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 filmmaker 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’ is a student project, a part of my MA thesis, and the first feature-length film I have produced. It shows people living with the invisible condition Ehlers-Danlos syndrome and conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives. They share all their challenges with the world, but also their successes and strength.

Never in my life had I done anything more substantial. I hope you will see that ’We Are Visible’ does not only include all my heart, but also the souls of every one of its contributors.

‘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!

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