Sixteen-year-old Regina Magdalena Casillas Gutierrez holds her one-month-old baby girl at the maternity ward in a public hospital. Since she is underage she has been unable to leave the hospital for weeks until her estranged mother signs her out. Guatemala has one of the highest teen pregnancy and birth rates in Central America.

Interview with Photographer: Michelle Siu

19th August 2019 by Will Stewart

MadeGood – Please can you give me some background on yourself as a photographer? When did you start taking photos, and what made you want to pursue photojournalism as a career?

Michelle – For me the beginning was a black and white image appearing in a tray of my high school’s darkroom. I wish I could say my photography teacher believed in me but the truth is I’m not even sure she knew I existed. When I was 16, I was really introverted and I figured out a way to build a darkroom in my parents laundry room and logged hours developing lame photos of my brothers feet and flowers from the garden in a room that lacked proper ventilation. I’m not sure how my dogs and I didn’t suffocate from the fumes of the chemicals. But at the risk of sounding corny, it was all really therapeutic in that darkroom when I was young. It took at least a decade later for me to seriously pursue photography beyond those walls. In between those times, I worked a corporate job that sucked all the life out of me but allowed me to save enough to buy gear and as soon as I could I quit I did and took a year to build a portfolio which landed me some key internships at publications helping me launch a freelance career for the past eight years. Which brings me to today— where I am a Canadian freelance photojournalist stepping away from my first love for photography to relocate to the UK this year to pursue another type of visual storytelling as I am in grad school in documentary film.

I think what drew me into photojournalism is that although I used to be quite shy — I was curious as hell about people and their stories. Photography was also the only thing that really made sense to me and really the only thing that I have done that I am proud of.

 A mother meets her baby for the first time. | MadeGood.films

MadeGood – You’ve covered a wide variety of stories in your career, but there are a few I’d like to concentrate on in particular. The first one is your work on the victims of thalidomide. Please give me some background on the story, and what made you want to investigate it?

Michelle – This thalidomide project is one that is very near and dear to my heart. This story broke my heart and made me angry and as a photojournalist we try to tell these kinds of stories in hopes to effect great or small. Fortunately this story had a greater impact than we thought. A lot of my personal projects centre around social issues and most of which deal with pretty sensitive subjects. This led to the photo editor at the Canada’s largest national newspaper – The Globe and Mail — assigning this project to me. These survivors of the drug thalidomide are amongst the most resilient people I’ve known and I am proud to have gotten to know them through this work. Thalidomide was a drug distributed worldwide to countries including the UK and Canada 60 years ago. It was once hailed as a “miracle drug” for pregnant women to treat morning sickness when it was actually causing severe deformities to babies in the womb. Those babies are now middle aged and the people I photographed had shortened, missing or flipper-like hands which protruded from their shoulders, internal damage, while others were deaf. And many others did not survive or were abandoned. It was important to me and the journalist I worked with to investigate and continue to publish stories on the topic throughout that year because it was truly underreported in Canada and the issue was really buried to the greater public. Unlike survivors in the UK, many had not received a penny of compensation in Canada while others received a very small settlement and under gag orders not to speak about the amount from German pharmaceutical company Chemie Grünenthal (who is still in business by the way).

thalidomide-JOHANNE44 | MadeGood.films

Thalidomide victim Johanne Hébert cuts her finger nails at her home in Montreal, Quebec on November 17, 2014. She is unable to cut her toenails and she says they can become painful when they are overgrown.

thalidomide-JOHANNE42 | MadeGood.films

Thalidomide victim Johanne Hébert has a few make-shift items installed in her apartment to assist her. She uses a hairbrush fixed to the wall at her home in Montreal, Quebec on November 14, 2014. The mother of a 28-year-old daughter who remains quite positive has no arms and is on strong painkillers for chronic pain.

The “Miracle Drug” Thalidomide | MadeGood.films

Thalidomide survivor Johanne Hébert has help showering twice a week from a worker. She washes her hair by rubbing her head against a sponge affixed to her shower wall at her home in Montreal, Quebec on November 14, 2014. The mother of a 28-year-old daughter has no arms and is on strong painkillers for chronic pain.

THALIDOMIDE-BERNADETTE-01 | MadeGood.films

Thalidomide victim Bernadette Bainbridge, 52, has seal-like hands, one ear, partial facial paralysis and is completely reliant on her elderly parents because of her disabilities. Her mother took thalidomide which was once considered a “miracle drug” for insomnia and morning sickness when it was in fact damaging an estimated 6,000 to 10,000 unborn babies worldwide. The Canadian federal government gave its victims a one-time compensation payout in 1991 of $52,000 to $82,000 a person– an insult to the now middle-aged victims.

MadeGood – How did build relationships with the people you photographed, and how did that relationship inform the type of photos you were able to take?

MichelleAll the survivors I met had physical features that were different from many of us. And like most of us who work in photojournalism or documentary storytelling— there is a great amount of trust and relationship building between you and your subject. I was really sensitive to that fact that they looked different and have been reminded their whole lives of this. Most of my subjectives I’ve captured are sensitive to how they appear, but I knew these survivors would be especially sensitive to this. And I did not want to only highlight this “otherness.” I tried as best I could to photograph with kindness. For some I took a lot of time chatting and getting to know them before I took a single frame like Bernadette Bainbridge who is very shy and quite isolated with her whole social circle revolving around her elderly parents. She has hands that come out from just below her shoulders. We had some heavy conversations so to lighten the mood I asked her what her dreams are for the future and Ill never forget, she had said that she hoped she would pass away before her parents because she is constantly fearful of who would care for her. And that really broke my heart. And I knew I used that conversation as the basis of how I wanted to take a photo that really spoke to her lack of emotional and financial security. And her photo was I believe the strongest of all the ones I took. Another example is Johanne Hébert, like Bernadette and many other survivors, her hands had come out from just below her shoulders and they are gnarled and twisted and end in three fingers on one, two fingers on the other. With Johanne there was immediate trust. An ordinary day for Joanne at home involves a series of acrobatic acts. She opens drawers with her toes. She brushes her blond hair by leaning over and running it through a hairbrush screwed into the wall. Ms. Hébert performs these everyday feats because she was born without arms. She let me capture reportage style images of everything from her showering to cooking a meal for her granddaughter. She let me into her life and I owe that all to her and her openness and willingness to be vulnerable. She remains one of the strongest people I’ve photographed to date.

thalidomide-ALINE-04 | MadeGood.films

Thalidomide victim Aline Vachon, 51, prepare a hamburger at her home in Montreal, Quebec on November 15, 2014. Simple tasks are exhausting and painful as her arms are misshapen and do not bend and she lives with increasing chronic pain and is unable to afford the $100 a month in pain medication. She like the other Thalidomide victims have yet to receive reasonable compensation from the government or the German drug company GrŸnenthal. Vachon’s mother was one of the pregnant women who was given the Thalidomide drug intended to cure morning sickness which caused severe birth defects including malformation of limbs and deaths.

THALIDOMIDE-007 | MadeGood.films

Thalidomide victim Sandy Hatch, right, with her mother Bev Hatch, left, in Hamilton, Ontario on January 23, 2015. Bev took the drug as a sleeping aid not knowing the damage that it was doing to her unborn child and has been dealing with a lifetime of guilt.

MadeGood – What was the outcome of your work, and what does the future hold for the people you photographed?

Michelle – This project is also near and dear to me, because almost immediately after the project was published on the front page of The Globe and Mail the issue was brought to attention in the Parliament of Canada and after a lifetime of inaction, survivors finally received a starting compensation plan of $125,000 annually. It may sound cheesy but this project really renewed my belief in the power of storytelling and in visuals because it played a part in changing a piece of legislation. I mean, money can’t fix many things, it won’t bring back a life time lived in pain without limbs and damaged organs or undo the emotions scars caused by their deformities, but it was finally a step in the right direction. I hope to continue this project in the form of a film— because the German pharmaceutical company Chemie Grünenthal is still in business and because story for these survivors continues.

GUATEMALA007 | MadeGood.films

Mothers wait with their children at the mid-wife clinic “Manos Abiertas” which aims to offer a safer alternative to women’s healthcare from the public hospitals. For a Guatemalan woman getting pregnant can be dangerous. The country is recovering from a history of genocide, civil war and discrimination and an inequality exists in many forms including gender. Guatemala holds the highest rate of gender inequality in Latin America ranking 116 out of 135 countries worldwide. This inequality is evidenced through the countryÕs treatment of its pregnant women and girls. Holding amongst the highest teen pregnancy and birth rates in Central America, the countryÕs inadequate maternal healthcare deeply affects generations of women, mothers and children.

MadeGood – The next project I would like to ask you about is called The Cost of Giving Life, which focusses on gender inequality, teenage pregnancy and inadequate maternal healthcare in Guatemala. You have some very candid access in a Guatemalan hospital- how did that come about? Was it difficult arranging the shoot across a language barrier, or do you speak good Spanish?

Michelle – Oh man, there was a lot of getting rejected and going back, getting rejected and going back. And then finally getting approval. Us storytellers are a bit relentless aren’t we? My Spanish is horrible but I did get connected to a fixer named Gabriella. She was a student who studied in the States and had just returned back to Guatemala where she was born. She and I hit it off immediately and she really believed in the story and in woman rights in her country and this whole project was made possible because of her. At one point we both saw our first child birth and Gaby felt really faint— and I realise how much of a shield the camera is in many ways. Anyway, it’s an interesting point about language barriers. Looking back at some of the work I did early on in my career (this story being one of them) I wonder if I’d still do stories where I don’t speak the language. I find you can really over come that through fixers but it’s still difficult.

GUATEMALA006 | MadeGood.films

ANTIGUA, GUATEMALA – JULY 25, 2014: A woman winces and is told not to cry out as she delivers her baby in a public hospital. Loved ones are not allowed to be present until hours after the birth. One of the doctors stated during the birth, “there is no dignity in child birth.”

GUATEMALA005 | MadeGood.films

GUATEMALA – JULY 23, 2014: Madeline Estefani, 16, who is nine months pregnant at her home. Guatemala has one of the highest teen pregnancy and birth rates in Central America.

MadeGood – How do you think things became so bad? Are there any parallels, or any stark differences compared to your home country Canada, or any other countries you have been to?

Michelle – The work that mid-wives — Comadronas— are doing in the country is part of the solution but Guatemala is a country still healing from a brutal civil war one in which the government has been condemned for its role in genocide against indigenous Mayans. I believe the effects of this war, the great gender disparity that continues to exist and extreme lack of maternal care is in many ways tethered to that civil war against indigenous populations. Guatemala has one of the highest maternal mortality rates in its region with the majority being part of impoverished Indigenous Mayan communities. And many indigenous communities lack access to hospitals such as the one I visited, however the conditions in that maternal ward to me reflect the state of maternal care as a whole for Guatemalan women and teen girls.

GUATEMALA004 | MadeGood.films

GUATEMALA – JULY 24, 2014: Melisenda holds her grandson Lester Juan David who she takes care of full-time after her daughter Pati passed away in the maternity ward at the public hospital. Pati was 17 years old when she was married and the father was not present and with another woman throughout her pregnancy.

GUATEMALA003 | MadeGood.films

ANTIGUA, GUATEMALA – JULY 25, 2014: New mothers rest in a room with their babies in the public hospital.

MadeGood – Then finally I wondered if you could just talk a bit about your project Malboro Boys. They photos of young boys smoking cigarettes are so shocking, I really just wanted to know a little bit more about how you came across this story!

Michelle – I came across a story about cigarette advertising targeting under developed and developing countries with lax regulations and the effects it is having on young children. And I thought what better way to highlight the issue of cigarette advertising than to show these very young children addicted. I thought it could make some sort of impact to illustrate the result of allowing what we in the West deem as archaic advertising practices i.e. at sports games catered to kids, right outside of schools, massive billboards all over the countries. I don’t have anything against smoking but it was the targeting of children I wanted to illustrate and that drew me into this story.

marlboroboys-01 | MadeGood.films

Ilham Hadi, who has smoked up to two packs a day and began when he was four years old, poses for a photo wearing his third grade uniform while smoking in his bedroom as he younger brother looks on February 14, 2014.

Marlboro Boys | MadeGood.films

Five-year-old Ardian Azka Mubarok smokes at his home in Garut, Indonesia on March 27, 2015.

marlboroboys-08 | MadeGood.films

Cecep poses for a photo as he smokes on February 10, 2014.

marlboroboys-06 | MadeGood.films

Dihan Muhamad, who used to smoke up to two packs of cigarettes a day before cutting down, poses for a photo as he smokes in his home on February 10, 2014.

marlboroboys-03 | MadeGood.films

Dihan Muhamad, who has smoked up to two packs of cigarettes a day before cutting down, poses for a photo as he has his first cigarette at 7AM at his home before he attends his first grade class on February 10, 2014.

marlboroboys-02 | MadeGood.films

Ilham Hadi, who has smoked up to two packs a day and began when he was four years old, poses for a photo wearing his third grade uniform while smoking in his bedroom on February 14, 2014.

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