Written by Silvia Falcier, OIFE Youth coordinator

Whoever is reading this article is probably holding their phone with fingers that curl in unusual ways as they stretch upward – or maybe the reader knows someone with this unique characteristic. One thing is certain: if we are here to read about Osteogenesis Imperfecta, we are also here to talk about bodies that articulate in the most creative and original forms. We are here to share the very common experience of walking through the city, accidentally laying our eyes on someone equally “strange”, and feeling a bit guilty for our innocent scrutiny. Because for all the times it has happened to us, we know it is an annoying attitude. I have found my very own – admittedly cheeky – way of dealing with this intrusion into my privacy. Simply an honest “If you want, I can give you a poster of myself, it lasts longer!” underscores the fleeting nature of my presence in the lives of these strangers.

From here springs my association of ideas that drives me to engage with all of you in a dialogue about the representation of bodies that do not conform to the masses, within the quintessential place where moments and people remain trapped in the observer’s mind for the longest: the museum. In my academic journey, always soaked in art history, the first and most significant encounter with someone interested in the subject occurred within the pages dedicated to the great Frida Kahlo. A woman with a distinctive figure and a peculiar gaze, her name evokes images of Mexican surrealism.

Until the age of 18, Frida showed no interest in the art world. In fact, she was more interested in playing sports to strengthen her fragile health due to the severe poliomyelitis she had suffered from as a child. This illness forced her to stay in bed for nine months and caused permanent consequences: her right leg was much thinner than the left. As if that wasn’t enough, on September 17, 1925, Frida had a serious accident: the bus she was traveling on was hit by a tram, crushed against a wall, and completely destroyed. The countless fractures forced her to bed again for months, during which, thanks to a special easel and a mirror that allowed her to continuously see her body ravaged by the tragedy, she began to paint her first paintings. They were self-portraits because, as she herself stated, “I spend a lot of time alone, and am the subject I know best”.

I claim to have personally discovered another noteworthy testimony while strolling through the pavilions of the Venice Biennale in September 2022.

Those who frequently walk through those sumptuous Venetian gardens know well that there is a sort of hierarchy in visiting the various rooms that compose the Exhibition. One starts with the Central Pavilion, followed by the countries that occupy a place of privilege in the minds of most spectators. It is only after hours of walking and exploration that one reaches the “second-tier” exhibitions, where, in September ’22, I noticed the discussion on the non-conformity of human bodies was relegated. No surprise there!.

Titled You Are Another Me – A Cathedral of the Body, the project by artist and screenwriter Adina Pintilie was presented at the Romanian Pavilion. Conceived as a multichannel cinematic installation, it explores how humans relate to their own bodies and to those of others.

“Pintilie transforms the Romanian Pavilion into a contemporary ‘cathedral’ that celebrates the body and human connections beyond all preconceptions.”- Cosmin Costinaș e Viktor Neumann, curators of the Pavilion

In the video that the artist continuously projects, scenes of everyday intimacy between various subjects unfold. Among all the stories, the one most relevant to our discussion is Christian Bayerlin and Grit Uhlemann’s, life partners, who focused on the intersections between sexuality and disability. Christian runs a blog on the topic, titled kissability.de. Together, they have given lectures on disability empowerment and intimacy at an international level.

 “I’m not afraid of this project or myself being attacked. You know, Adina, when they accuse you of exploiting vulnerable human beings such as the disabled ones, just know that the people screaming are precisely those who have no idea about disability, about what us disabled people feel, need, desire. They have their own false concepts about disability. They look at us as vulnerable and as somebody who has to be protected. But that’s actually patronising, they are putting us down. Like anyone else, I do have the right to enjoy my body, to explore my sexuality and show myself as a sexual being. I believe it is important to show that we, disabled people, have the same desires, dreams, responses to stimuli, like everybody”. – Christian Bayerlin

My space to tell you about the rare artists who, in their careers, have decided to dedicate part of their work to the narrative of disability is as limited as the space dedicated to this theme in museums. Therefore, I leave it to you to uncover other uplifting spaces to recommend to all those people to whom you would have liked to give one of your posters as they watched you in astonishment while you were strolling through your city.

Silvia F.