I saw Joana Massó's face for the first time in this extraordinary photograph accompanying today's La Punyalada, a work by my friend Tanit Plana. Tanit had compiled seventy-four portraits of young Catalans whom she captured in abandoned areas of their respective cities and towns (in nooks, soulless boundaries, and non-places that gave a baroque and almost alien air to the soon-to-be adults looking at the camera). The works belonged to Púber, the exhibition that this great artist had prepared for La Virreina and which, fortunately, has traveled to more places in the territory. Among all of them, equally beautiful and unsettling, I was quickly amazed by Joana's face and gaze, and Tanit's talent is such that the power of the portrait did not make me realize until a few seconds later that the model was the only bipedal specimen in this magnificent exhibition who was in a wheelchair.
Joana Massó is a 22-year-old woman from Vilanova i la Geltrú who was born with a degenerative disease, one of those with a name that is scary just to pronounce: spinal muscular atrophy (there are about a thousand cases throughout the state). Until she was eleven months old, she was a baby like any other, until fatigue strangled her most basic movements and bodily growth became a race for survival that has resulted in a figure reminiscent of Egon Schiele's vampiric labyrinths. Joana's flesh has survived more than twenty surgical operations, her womb could become pregnant and give birth, but giving life could endanger hers, and her existence is linked to this enormous chair that is part of her soul and with which, theoretically, she should be able to access all the places where walkers can frolic. The chair is an extension of her body: "if you touch it, even slightly, I will notice it immediately."
"Above all, don't write an article to make people feel sorry for me. I don't want you to say I'm very brave," says Joana as we have coffee in the center of Vilanova. "My life has always been like this," she adds. "I don't wish to walk; this is normal for me and all I want is to enjoy a happy life, like everyone else." As I transcribe it, I find it hard not to contradict her, because to survive as Joana Massó has, you need three pairs of balls. She tells me everything she can and cannot do, and I, ignorant as I am, am amazed at the lack of knowledge we have about people who cannot access everywhere. She studies design at Massana and wants to specialize in creative activism; that is, she longs to tell her world, and also the limitations we have placed on her to live, through artistic language and the tricks of design. Hers is not a protest task; in Joana, everything stems from the simple will to create.
"I don't wish to walk; this is normal for me and all I want is to enjoy a happy life, like everyone else"Said and done. Through her Instagram account (visit @jouniiis and @jounisdesign), Joana has created a series of short documentaries, photographs, and videos where she shows how difficult we make it for people with limited mobilityor bodily problems. "In Vilanova I cannot access 70% of places," he confesses to me as we walk down the Rambla and, indeed, I notice that most establishments do not have a ramp for him to roll his one hundred and seventy-kilo, eight-thousand-cucumber-cost chair. The case reaches its paroxysm in the very school where he studies, a building by Carme Pinós with a super-cool design verymoderniqui… but with classes where Joana cannot even enter. Also the buses, which know about her special needs, but which still accommodate her (sic) with seatbelts that, in case of braking or an accident, would launch her into the air. Juana tells me this laughing, but the situation is one to cry about.
In a world of victimhood everywhere and where whining is the vital norm, Joana's smile is a true work of art and her determination when explaining her world is an imperative against our indifference. Chatting with her, I discover what her life is like; she is forced to have an attendant by her side to lift her from her chair to go to the bathroom or to shower; she would like to go to the beach more often but, it goes without saying (or yes, it is necessary!), most natural places in the country are not equipped for her to enter. She can only access certain trains and a few vehicles, including airplanes, which for now she can only glimpse in the sky. Luckily there is the mobile phone, for many it is a tool for stupid recreation, but for Joana it has served to express herself and find love, via Tinder. When we gain confidence, I dare to ask her, clumsily. Listen, and for sex... how do you do it? Well, lying in bed, don't bother you, just like you!, she replies laughing at my foolish face.
In a world of victimhood everywhere and where whining is the vital norm, Joana's smile is a true work of art and her determination when explaining her world is an imperative against our indifferenceIf I were an art patron in the country, I would get off my ass and contact Joana Massó, because besides being an activist for her cause, a person who has been able to take dance classes with her wheelchair (???!!!)has a brain overflowing with ideasthat can link creativity with greater awareness towards people who cannot access most of the places we naturally transit through.Joana does not give pity, it is true, because she has a vitality that gives envyand, as I listen to her, I think she is one of those people you can't help but want to befriend. She knows how to listen and I, I certify it, have a good eye for capturing a special soul when I contemplate it, even if it's in a photograph. I don't know if the same thing happens to you, but ever since I saw that work of art by Tanit, I think Joana is one of the few people who have seriously impacted me, a person to chat and walk with without limits.
I have done my part, as you can see. I haven't written that you are brave. But you know I think it, Joana Massó.
Add The New Barcelona Post as your preferred Google source for free
Stay informed with the latest news.