Nineteen-year-old Ellie Goldstein from Britain has been shaking up 21st century standards of worth and beauty by simply being herself. She is proving to the world she is capable and thriving. She shouldn’t have to prove anything at all. This bright eyed gorgeous young woman has quite literally demolished societal and media standards for beauty norms. She spent years pursuing her dreams to become “an overnight success."
But what makes her so different from traditional standards of female beauty? After her photo posted on Instagram for the Gucci mascara L'Obscur campaign went viral a year ago, she began garnering a lot of attention, and rightly so. The fact that Ellie has Down syndrome (DS) but has gained such attention as a model serves as an incredible example of inclusion and representation for everyone else who has big dreams and also happens to have DS. Every time she models, she helps others feel seen in this big world. As amazing as Ellie’s accomplishments are, this is not just about her.
The fact is doctors often tell mothers to abort their babies when they are diagnosed with DS. These children are spoken about as if they are not a worthwhile human life. Their mothers are told their quality of life will be terrible. The claim is it is actually more kind to just kill them, whether at the time of diagnosis, up to birth, or even right after birth.
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What does this really look like from a mother’s perspective, pregnant and just finding out her baby may have DS?
Let’s take a look at Heidi Carter’s story.
A beautiful woman, newly married and incredibly happy, she wants to tell the world that she is happy and healthy and living a full, wonderful life. Heidi and her husband both have DS. Heidi is advocating for rights for babies with possible DS diagnosis, advocating for all non-fatal diagnosis’ to be subject to the 24-week abortion cut off in the UK, as opposed to all the way up until even right after they are born.
Doctors told Heidi’s mother to kill her nine times. Can you imagine being a mother and having so much pressure from doctors who are in charge of your and your baby’s medical care, pressuring you to kill your child because your child has no future? Put yourself in the mother’s shoes, in love with her baby’s heartbeat, already in love with the little person that he\she is, and yet you're guilt tripped into thinking that making the decision to have your child and raising your precious baby is actually cruel and selfish of you.
Parents are simply not being told the truth. Parents of DS babies are led to believe that their children will have no quality of life, that they are simply a “malformed fetus.”
Here is Sara Hart Weir, then president of the National Down Syndrome Society, in a 2018 Healthline.com article:
“‘Women — even in the United States of America — are not receiving accurate, up-to-date information about Down Syndrome from their healthcare providers — a vital issue we have advocated for, for many, many decades,’
Weir said people with Down syndrome need to be accepted as part of society.
‘In the U.S., people with Down syndrome continue to exceed expectations,’ she said. ‘Individuals with Down syndrome live independently, go to college, work in competitive jobs, get married, live to their full potential, and lead fulfilling lives.’”
Will we hear more from DS advocates or families living with the condition? Can we count on medical professionals to have adequate concern for these precious lives such that they don’t push families to abort upon receiving an adverse prenatal diagnosis?
A professor of Gynaecology and Obstetrics at the University of Copenhagen gave a very detached view of human life in a 2015 interview with Vice News, according to Life Institute article, "Down’s Syndrome and Abortion the Facts":
"I think that Danish women are less sentimental about aborting malformed fetuses partly because that view is supported by professional medical staff. Recommending abortions isn't an obligation but we give very realistic prognoses.... We give parents realistic expectations about future problems and generally, women carrying fetuses with severe malformations are recommended to terminate the pregnancy."
Are they really given realistic expectations though? Or just personal judgment?
Let me just submit here that whatever “science” doctors are using to make unfounded claims that DS babies are better off dead, should be completely thrown out. The science, the facts, to support this just aren’t there.
Just look at the following examples below of people with DS doing major things with their lives, proving they deserve to live, and living quality lives.
Zoe Ettinger’s Insider article, "13 People With Down's Syndrome Who Are Breaking Barriers in Entertainment, Athletics, Fashion and More," highlights some incredible people. This list is not exhaustive by any means, simply an example that if you look for hope, you will find it.
● Ellie Goldstein - first DS model for Gucci’s mascara L’Obscur
● Zack Gottsagen - first presenter at Oscars with DS with his costar Shia La Bouf
● Australian model Madaline Stuart - second person with DS to walk at New York Fashion Week in 2015. She also started her own fashion line called 21 Reasons Why, named after the 21 chromosomes associated with DS. Madaline says, “There are still some people who do not take me seriously. I deserve to be treated the same as every other model. I work as hard as anyone else."
● Actor Pablo Pineda - first European with DS to get a university degree. He teaches now. And he explains, "I always say I am Pablo Pineda and that I have Down's syndrome. There is a big difference between 'having' and 'being.' 'Being' can crush you down and 'having' shows it is only one feature."
● Sujeet Desai - first musician with DS to play at Carnegie Hall, is also a master at seven instruments: “Bb and bass clarinet, alto saxophone, violin, piano, trumpet, and drums. He has performed in almost every state and in 13 countries.”
● Isabella Springmuhl Tejada - from Guatemala, made BBC’s “100 women list”, and is a fashion designer, who tells the world, "My family always told me I was like anybody else — I just had an extra chromosome. Sometimes it took me longer to learn, but I did it."
● Tim Harris - first person ever with DS to own his own restaurant, also winner of many gold medals in the Special Olympics in the following sports: poly hockey, basketball, volleyball, golf, track, and field.
● Jamie Brewer - played Adelaide Langdon in American Horror Story: Murder House. Also the first person in 2015 with DS to walk in New York Fashion Week, Ettinger writes, “In 2018 she became the first person with Down syndrome to win the Drama Desk Award for Outstanding Featured Actress in a Play.” Ettinger says, “She helped change Texas legislation, which previously used the R term, to use "Intellectual Developmental Disability" in all official languages instead. In a Today show interview she had a message for people who still use the R word: "Don't limit us. Don't limit me."
● Chelsea Werner - Ettinger explains about her, - “Werner was unable to walk until she was nearly 2 years old, and was initially told she would always have low muscle tone. However, she proved doctors wrong and became a four-time US National Championships winner in gymnastics at the Special Olympics.”
Is this enough evidence that the babies who were not supposed to be able to live an independent, quality life, are being quoted in some of the biggest magazines in the world, traveling to numerous states and countries, when they were never projected to be able to speak in the first place?
We must stop reducing human life to simply what is conveniently fitting the conventional mold. What these people have done is truly amazing - but they should never have had to prove anything to begin with.
Tweet This: We must stop reducing human life to simply what is conveniently fitting the conventional mold.
Let’s just be honest and say it’s more convenient for some to want to see them eliminated rather than have patience or learn about them.
Let’s stop limiting people based solely on the faulty idea of who is and is not “normal.”
Let’s let them be seen.
Let’s tell parents these stories of beautiful men and women who, after being given the chance to live life, possibly ignoring a doctor's advice to kill them at birth, have created and contributed such incredible things to this world. Let’s show parents images and share stories of these people. and tell them DS does not make a child worth any less. Rather, it makes them simply different.
Individuals with DS are getting married, owning restaurants, changing state legislation, acting, dancing, modeling, creating their own clothing lines. They look different, learn differently, but have no less worth. All life is sacred, regardless how it’s packaged.
Human life is sacred, regardless of any disability. Every baby, disabled and not, has the basic God-given right to live, and the adults running the show must realize we have no right to decide who is worth saving, who deserves a chance to experience life in this world.
Let’s help get the word out and raise awareness that no matter the degree of physical or mental capability we are all God’s children and God’s children deserve the right to live.
Editor's note: This article was updated to reflect Sara Hart Weir's current status with the National Down Syndrome Society.
