Decimos que el aspecto no es todo, ¿pero cuántas veces no miramos a una persona e inmediatamente formamos una opinión, buena o mala, basada en la apariencia?
Durante toda su vida, Tessa Schiethart ha tenido que aguantar que la gente la mire. Tessa, que nació en Amsterdam, nació con el síndrome de Sturger-Weber , una condición que afecta ciertos vasos sanguíneos. Se caracteriza por una mancha de nacimiento y anormalidades neurológicas.
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Today it is #internationalwomensday ! On this International Women’s Day, ask yourself what it means to be a woman. Or what all the women around you mean to you. This weekend, I went to an exhibition at @tropenmuseum. It was called A Genderful World and perfectly demonstrated how gender can be culturally defined. As being a woman is not only defined by sex, but also by gender, it was very interesting. There are so many countries in this world that have more than 2 genders, where gender is not a binary thing. What do you identify as? Is that accepted in your society and in your culture? How does the role of women in your society differ from that of men? In some cultures, some genders have a spiritual or holy role. In Mexico there is the ‘muxe’: men who take on the role of a woman, not because they identify as women, but because they take up all the ‘traditional’ roles ascribed as female. In many countries of South Asia, there are hijra’s; men-to-women transgenders. There is still a lot of inequality for women in many countries and regions. We still have a long way to go, and that is why it is so important to have a day like today. To look at where we can improve as a society, and as a global community. A lot is improving already too. Today is also a good day for me to announce that I am currently researching the difference of being a woman with a visible difference in comparison to being a man. Please send me an email at [email protected] if you want to share your views and experience with being a man or a woman with a visible difference. I am currently comparing it to the differences in beauty standard for men and women, to see if there are any conclusions to draw from this in tackling the #lookism issues (discrimination on the basis of looks)! All views welcome! 📷 by @sophiemayanne #womensday #8march #futurefemales #womenempowerment #femalemale #agenderfulworld #civilrightsforwomen #sexismofwomen #powerofparity #leanin #beboldforchange #i_weigh #diversityfashion #standforwomen
A post shared by Tessa Schiethart (@tofacetheworld) on Mar 8, 2020 at 9:42am PDT
Cuando nació, la madre de Tessa, Mariette Schiethart, se preocupó sobre cómo su hija sería recibida en público y cómo su condición afectaría su vida social.
Cuando tenía tres años, el médico de Tessa sugirió a sus padres que se sometiera a un tratamiento con láser para disminuir la mancha de nacimiento. Continuaron con el tratamiento, pero en lugar de aligerar la mancha de nacimiento, Tessa terminó con cicatrices. El tratamiento salió mal le y causó un daño horrible en la cara de Tessa.
“Cuando tenía seis años paramos el tratamiento con láser porque mis ojos se volvieron más importantes y había una presión ocular alta y necesitábamos bajarla para evitar que mi ojo izquierdo también se volviera ciego”, dijo a Barcroft TV .
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Pain in pictures. . . I have thought long and deep why this picture often gets me to cry when I see it. Even now, as I write this, the tears burn behind my eyes and there is a deep sense of sadness that comes up. Why? I have contemplated my childhood traumas lately In this picture I see a little one, just burnt after laser treatment gone terribly wrong. The scars that came from it intensified the severity of having a birthmark even more. Mostly I feel my parents’ pain. It is hard to write, but what I feel when I see this picture is mostly the hard times my parents have gone through with all the medical treatments that were suggested by the doctors. Parents who have and still do everything in their power to grow me in a happy, confident girl. Following the advice of doctors in treating the port wine stain and one day be sent home with a little one with blisters all over from the laser treatment that was suggested is not ok. When I see this picture I feel their hopelessness, the doubt and questioning whether their little one would be fine, and the tears stream down my face. . . A picture captures a moment in life. On @instagram we forget that life is in flux and we change moment to moment. In this very moment I am totally fine, happy, strong, with lots of hope. Pictures can bring up feelings that are still a part of you, that remain a part of you. But the reality is that the past turned into future. And I realize, all turned out perfect as it is. Still riding bikes and sometimes looking behind and seeing what is there to remind me of where I am going. ❤️ . . . #pictures #past #future #burned #markedbyaburningflame #portwinestain #portwinestained #faceequality #lasertreatment #sturgewebersyndrome #scars #visibledifference #facialdifference #tofacetheworld #facetheworld #birthmarkbliss #lookingbehind #reminiscing #toddler #burnsurvivor #facialtreatment #face #skincondition #skincare #lifeinpictures #bodypositive #bodyawarenessproject #bodypositivity #consciousnessshift
A post shared by Tessa Schiethart (@tofacetheworld) on Sep 7, 2019 at 7:26am PDT
Desde entonces, ha acogido su mancha de nacimiento, llegando incluso a convertirse en una “guía de vida”, también ha estudiado a personas que tienen diferencias visibles y los estigmas y la discriminación que enfrentan.
“Mi mancha de nacimiento y mi aspecto diferente nunca me han impedidoa perseguir mis sueños. He estudiado los estudios que quería, trabajo, tengo muchos amigos y he viajado sola por todo el mundo. Me encantan las pequeñas cosas de la vida y practico yoga todas las mañanas para establecer mi intención para el día”, dice ella.
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Pain is an interesting thing. Whether it is physical or non-physical pain. Some say pain is our biggest teacher, because through those moments we learn the most about ourselves, our actions and reactions to it. The last week I had a bit of a physical setback. I feel fine, but my back hurts when I practice yoga in the morning. The pain triggered a lot of resistance, doubt and sadness towards the practice and my body. It comes to everyone at some point. It triggers a lot more though, and I sometimes become a bit hypogondrous with it and start to doubt a whole lot of other things. Like my eyes, I start to think “Do I still see clearly?” and then I doubt that, and think I should obviously go to the hospital to check my glaucoma if the pressure is good. When I was young, there were times I was in the hospital every single day for my eyes or my port wine stain. Over the years it went from daily slowly to weekly, bi-weekly, monthly, and now since a couple of years my eyes have been so stable that twice a year is fine. But from going so often to the hospital, and now not, makes me panic sometimes. It requires much more self-inquiry to seperate false visions from right ones. Seperating doubt and insecurity from actual setbacks and, whenever something intensely physical comes up, work gently with it to figure out what it is you should clearly see. . . . . #glaucoma #eyes #thinking #treatment #birthmark #portwinestain #sturgeweber #portwinestainbirthmark #bareyourbirthmark #bodypositive #awareness #bodyawareness #flaws #yoga #ashtanga #practice #breathe #doubt #fear #practiceandalliscoming #walkthewalk #talkthetalk #hospital #checkups #eyes #vision
A post shared by Tessa Schiethart (@tofacetheworld) on Dec 1, 2018 at 1:13am PST
“Elegí no pasar dos horas de mi mañana frente a un espejo poniéndome una máscara de maquillaje químico para cubrir mi mancha para que la ‘sociedad me acepte o para que encaje en algún estándar de normalidad.'”
Antes se ha maquillado, pero solo fue unas pocas veces, y ninguna de las veces estuvo satisfecha con el aspecto.
“No me reconocí en absoluto sin mi mancha, y ese era un sentimiento tan extraño.”
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What do we believe? We can be called certain words by certain people. It is only the words of the other we believe in that will hurt us. Before they have even said something, we already believe “You are not good enough”, “you look weird”, “you are too nice”. These are all examples that I have been told. In good situations, but also in abusive situations. The first and the third are things that I have believed. And have acted on. I have let things pass because I thought I wasn’t good enough for it. And I have done things for people where later my friends would say ‘you are too nice’, and I agreed. But only because I believed these words myself already. • . . At times I have been called the second one too. But with this I strongly believed, from a young age, there must be something with the person who speaks these words and I better act on that belief and stay the hell away. And I did. Maybe this is why I can recollect the truly abusive words that were spoken on my look to be about 7. 7 too many times, but I consider it quite a good number. 7 great lessons too. In these 7 incidents I can truly remember having felt hurt. In all those situations, I remember already having felt vulnerable on those days before it happened. It were confrontational moments, some intimate with (no longer) loved ones, other with total strangers. I think it is about our own beliefs we already have prior to what is said to us. . . .Often the words we use say a lot about us. The same accounts for the words that are spoken to us; it is a reflection of the person who says them. The only thing you are responsible for is how seriously you take some people’s words and how you weigh them onto yourself. • The thing I want to give to you is the question: do you really believe the words that come out of other people’s mouths about you? Why were you listening in the first place? Are you acting on those words? Do they influence your present moment? Why? And what are you without those words now in your mind? . . . • 📷 by the talented @jurian1975 • #words #wisdom #looks #mindovermatter #birthmarks #undermyskin #birthmarked #portwinestain #sturgewebersyndrome #faceequaljty #diversiteit.
A post shared by Tessa Schiethart (@tofacetheworld) on Jan 12, 2020 at 10:52am PST
El objetivo de Tessa es inspirar a otros a ser los que son a pesar de las diferencias, reconoce que algún día todos encontrarán algún tipo de obstáculo, pero eso no debería obstaculizar los sueños de toda la vida.
“Vivimos en un mundo donde nos identificamos demasiado con nuestros cuerpos”, dijo ella. Creo que juzgamos demasiado la apariencia externa y hay una sensación de “normal” que simplemente no es real”.
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When people ask me what I have on my face, they often also ask me how I deal with it. Some particularly ask me why I don’t consider using make-up to cover it. It is a very personal choice and I really understand why some decide to use make-up, because yes, it sure can be hard sometimes to literally ’face’ some situations. Yet already years ago I chose not to spent two hours of my morning in front of a mirror putting on a mask of chemical make-up to cover my stain so that 'society' would accept me and I would fit some ‘standard of normalcy’. I did try it, twice, the pancake of make-up, and although I love pancakes, this was a kind I absolutely did not want to try ever again. I didn’t recognize myself at all without my stain, and that was such a weird distorted feeling. We live in a world where we identify too much with our bodies. I think we judge outside appearance too much and there is a sense of ‘normal’ that just ain’t real. – Behind appearance is experience, which has a past and story to it. Every body has a different story, some more obvious on the outside than others. And I can assure you that a port wine stain too has a lot more to it besides the outlook of it. #sturgeweber #birthmark #portwinestain #naevusflammeus #facetheworld #nothiding #fiercefacing #medicine #bedifferent #sturgewebersyndrome #diary #inspiration #tofacetheworld
A post shared by Tessa Schiethart (@tofacetheworld) on Oct 9, 2018 at 7:06am PDT
“El término normal está tan sobrevalorado, no hay nada normal todos somos diferentes y algunos de nosotros nos vemos un poco diferentes por fuera.”
Qué bien, Tessa. Necesitamos a más personas positivas como tú en el mundo. Solo recuerda que Dios tiene un trabajo especial para ti que nadie más puede hacer.
Comparte la bonita historia de Tessa en Facebook, necesitamos más historias positivas.