Marinka Masséus. Chosen [not] to be, 2018.

1st place Sony World Photography Awards 2019 | 1st place LensCulture Portrait Awards
2019.

This series is part of Radical Beauty project, an international photography project (organized by Daniel Vais) which aims to give people with Down’s Syndrome their rightful place in the visual arts. The young women that Marinka Masséus worked with – Juliette van Broekhuisen, Margot van Maurik, Emma Kemp, Eveline Kamperman and Tessel Kersten – shared all a strong will to succeed. To prove themselves.

With Chosen [not] to be, the artist reflected on their reality – the barriers they face, society’s refusal to see their capabilities, the invisibility of their true selves – and translated their experiences visually, so as to evoke the restrictions placed upon them by society. Marinka Masséus’s goal was to subtly convey the message while at the same time showing their individuality, their beauty and their essence. She masterfully succeeded to find the fine line between making them truly visible, while conveying their invisibility and the barriers placed upon them.

Chosen [not] to be 01, from series Chosen [not]to be, 2018

This series is part of the Radical Beauty project, an international photography project aiming to give people with Down’s Syndrome their rightful place in the visual arts. The young women I worked with shared a strong will to succeed. To prove themselves. With ‘Chosen [not] to be’ I reflect on their reality – the barriers they face, society’s refusal to see their capabilities, the invisibility of their true selves – and have aimed to translate their experiences visually so as to evoke, in the photos, the restrictions placed upon them by society as well as our inability to see beyond our prejudice. Their wish to make us see beyond our preconceived notions is very palpable. They want the world to SEE them and when we do, our perceptions invariably shift

Chosen [not] to be 02, from series Chosen [not]to be, 2018

In the Netherlands, people with Down’s Syndrome have collected their experiences in a book called Zwartboek (Blackbook). They have offered this book to the government as a catalyst for change. Reading the collection of stories in this book broke my heart. There is so much misinformation. This misinformation leads to widely held preconceived notions which profoundly impact the lives of people with Down’s.

Chosen [not] to be 03, from series Chosen [not] to be, 2018

Much to the frustration and pain of people with Down’s Syndrome and their families, there is a fundamental discrepancy between the capabilities of people with Down’s, and society’s view of them. This discrepancy is relevant on many levels. First and foremost, it negatively impacts the lives of people with Down’s. From the way they are treated, to opportunities at school and professionally. Secondly, society’s one-sided biased narrative, preconceived notions and lack of accurate information impact the agonizing decision families have to make after a prenatal screening (NIPT) comes back positive.

Chosen [not] to be 04, from series Chosen [not] to be, 2018

The parents I met spoke lovingly about the precious addition to their family, expressing that most of the challenges lie not with having a child with Down’s, but with responses from society. From schools that refuse to enroll their children, comments from strangers, family members, doctors etc. The constant obstacles that hinder their child to fulfill their full potential as he or she remains unseen.

Chosen [not] to be 05, from series Chosen [not] to be, 2018

When it comes to their personalities, as Sara Gordy, professional actress, eloquently describes: “When you meet one person with Down’s, then that is exactly what happened, you have met one person. We are all individuals.” However, often people don’t look further so as to discover the unique personality they have the opportunity to meet and, thus, instead of the vibrant personality in front of them people but see a myopic tunnel vision as their own preconceived notions are reflected in their perception and people with Down’s blur into one.

Chosen [not] to be 06, from series Chosen [not] to be, 2018

Working with Juliette, Margot, Emma, Eveline and Tessel, I witnessed their potential and was deeply touched by their strong personalities. What I witnessed was honesty, dedication, a will to succeed, professionalism and an overwhelming ability to give love in its purest form. But first and foremost I saw purity; a refreshing version of what you see is what you get as there were less filters in our interaction. Which is such a valuable mirror held up to the rest of society.

Chosen [not] to be 07, from series Chosen [not] to be, 2018

97% of families with a child with Down’s Syndrome say that they are a valuable and precious addition to their family, bringing happiness and joy, and yet, in some countries 94% of women abort when test results come back positive. That opens up the question whether the flow of information is impartial and neutral, conveying the many positive experiences as well as the challenges. What narrative is filtering into society?

Chosen [not] to be 08, from series Chosen [not] to be, 2018

What shocked me, was when I learned that often, when the test results confirm Down’s, the first question the physician asks is “when are we scheduling the abortion”. Instead of asking, “What do you need from me to make the best decision for you and your family,” the woman is immediately steered towards ‘getting rid of it’. Which means that the woman in question will never receive the proper information to make an informed decision about her new baby and prospective addition to her family.

Chosen [not] to be 09, from series Chosen [not] to be, 2018

In this moment in time, many marginalized groups are getting more vocal, gaining confidence and claiming their rightful place in society. Whether it is the LGBT+ community, people of color, women resisting the objectification of the female body via #metoo and #timesup or the community of people with Down’s Syndrome. It is long overdue and just in time. Especially in case of Down’s Syndrome because the pace of technological developments concerning prenatal screening dictate that we need to have this discussion about inclusion sooner rather than later.

Chosen [not] to be 10, from series Chosen [not] to be, 2018

Tragically, with some countries like Iceland and Denmark boasting “near perfect eradication quotes,” soon there will be no more people with Down’s Syndrome to show us who they are.

BIO

Marinka Masséus (1970, Netherlands.)

After finishing her MBA at the Fotoacademie in Amsterdam, Marinka’s studies in Buddhist Psychology guided her philosophical journey and stimulated her to channel her concepts and feelings into images. Marinka’s work revolves around people and their place in society; her photography is a way to communicate with the outside world about topics she cares about (injustice, inequality) and represents an essential part of her link to life. Ultimately, her photography approach is about connecting with people: Marinka remembers each moment that they, for a short while, let her into their lives.