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How Did Down Syndrome Get Its Name?
Some disability-related names have dropped out of usage, because they are now considered to be offensive due to their origins. Down Syndrome (Trisomy 21) is one example. This is a genetic condition caused by an extra chromosome and it is the most common chromosomal anomaly in humans. The condition was originally called "Mongolism." This term dates back to the 1860s, when British doctor John Langdon Down first described the disorder.
In 1866, Down published the academic paper, "Observations on an ethnic classification of idiots," in which he claimed that it was possible to categorize different types of conditions by ethnic classifications. He thought that people with this disorder shared facial features with people of Mongolian ethnicity, so he named it "Mongolism." Down further believed that this condition was a reversion to an inferior race. The term soon became offensive because it was racially charged, implying that Mongolian people were inferior.
The original name was also offensive because it mischaracterized the condition. But in 1959, French geneticist Jerome Lejeune discovered its genetic cause, which is an extra copy of Chromosome 21. In 1961, Lejeune, along with other international experts and Down's grandson Norman, petitioned the medical community to find a new name, because Mongolism was a misnomer. In 1965, the World Health Organization finally withdrew the name after a request by a delegation from the Mongolian People's Republic who wanted to reclaim the name of their native people. The condition was re-named Down syndrome, after John Langdon Down, while "Trisomy 21" is also used. ("Down's Syndrome" is still used in the UK.) When the name was changed to a more clinical and therefore accurate name, it helped to increase the public's understanding of the medical condition, and encouraged empathy for people born with the condition.
During the 1960s, some believed Down syndrome was a relatively new condition. In support of this "modern theory", they noted that people with the condition were not portrayed in ancient art. In response, others observed historical paintings that appear to depict subjects with Down syndrome, and proposing that the condition existed throughout human history. For example, the Nativity scene in the Flemish painting "The Adoration of the Christ Child" (Circa 1515, by follower of Jan Joest) may be an early depiction of Down syndrome in Western art.1 An angel and shepherd shown in the painting have facial features suggestive of Down syndrome. A few years ago, the earliest confirmed case of Down syndrome was found: the skeleton of a child who died in Medieval France.2 The way the child was buried, just like any other person buried during this time, suggests that Down syndrome was not necessarily stigmatized during the Middle Ages.
Today, it is perceived as misleading and offensive to use "Mongoloid" to refer to people with this condition, although not everyone is aware of this. In November 2017, nutritionist Libby Weaver issued an apology and recalled 20,000 copies of her book "What Am I Supposed To Eat?" following complaints of her use of "Mongolism" to refer to Down syndrome. Mongoloid, Mongol, mong, and mongy are still used as insults toward people with intellectual disabilities and as general terms of abuse. In October 2011, English comedian Ricky Gervais came under fire when he shared the joke, "Two mongs don't make a right" on Twitter. He refused to apologize and even added a sketch about "mongs" to his comedy routine. Eventually, after much public pressure, he backed down and apologized, admitting that he had offended people by using the term and did not realize that it was still used as a derogatory term for people with Down syndrome and other disabilities, or to imply disability. When high profile people such as Gervais wield the former diagnosis as an insult it can have the effect of popularizing the term as a slur, which can further stigmatize and marginalize the people involved.
Today, the World Health Organization is careful to ensure that places and people are not stigmatized when it comes to the naming of new diseases and conditions.
Read about this topic and more in Karen Stollznow's new book, "On the Offensive: Prejudice in Language Past and Present."
Notes
1. Leach, Mark. 2013. Down syndrome diagnosis at the Adoration of the Christ. Http://www.Downsyndromeprenataltesting.Com/down-syndrome-diagnosis-at-the-adoration-of-the-christ-child/?Utm_source=DSA+List&utm_campaign=f596c61937-Museum_Newsletter_July_20147_7_2014&utm_medium=email&utm_term=0_b0cba609a1-f596c61937-33984273
2. Barras, Colin. 2014. Oldest case of Down's syndrome from medieval France. Https://www.Newscientist.Com/article/dn25848-oldest-case-of-downs-syndrome-from-medieval-france/?Ignored=irrelevant#.U-iKtvldUmM
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Share The Spirit: This Nonprofit Works To Help People With Down Syndrome Thrive In The Bay Area
By the time June Lin arrived into the world, five weeks early and weighing 5 pounds, 6 ounces, she already had scores of supporters to help guide her for the rest of her life.
June has Down syndrome, something that at one time could have meant tragedy. Now, her life and those of other children are celebrated through the work of the Down Syndrome Connection of the Bay Area.
Suzanne and Mike Lin, of Danville, excited to learn they were expecting their first child, decided to do a blood test about halfway through the pregnancy to learn the sex. The test also would look for genetic anomalies.
"I just wanted to know if I was having a boy or a girl," Suzanne says. "They had the science to do it and so I thought, 'Why not use the science?'"
The Lins not only found out that their firstborn would be a girl; they also found out that she had a duplication of Chromosome 21, which meant that June had Down syndrome, a simple glitch in genetics that will shape not only June's future but that of her family. The genetic condition impacts brain and body development and can cause other medical conditions, including life-threatening heart problems.
The Lins struggled to make sense of everything. Why them? Why June? What would it be like to care for an infant, child and later an adult with Down syndrome? Would they be up to it?
That's when the Down Syndrome Connection of the Bay Area reached out to them, offering answers to their questions and a community of parents who have all been where the Lins found themselves.
Suzanne Lin, of Danville, fixes her daughter June's hair before spending some quality time coloring with her father Mike Lin as they sit down at their home in Danville, Calif., on Monday, Oct. 14, 2024. Seven-year old June has Down syndrome and the Down Syndrome Connection of the Bay Area helped her parents greatly when they found out her diagnoses. (Jose Carlos Fajardo/Bay Area News Group) "We empower, inspire, and support people with Down syndrome, their families, and the community that serves them, while fostering awareness and acceptance in all areas of life," says Teresa DeVincenzi, executive director of the non-profit organization founded in 1998.
Down Syndrome Connection, based in Danville but serving the entire Bay Area, works with about 250 children and young adults with Down syndrome, and serves more than 2,600 people through a variety of programs.
That includes information and referral resources, a Communication Readiness Program, family support groups, music therapy, workshops and community programs. The nonprofit also offers the THRIVE program (an acronym for Together, Happy, Respected, Independent, Valued and Empowered), which promotes physical, cognitive and behavioral skills.
"The Down Syndrome Connection is a critical resource for families with a child born with Down syndrome," DeVincenzi says, "and we are there for them as their child grows, with programs at every stage in the life cycle."
June Lin, 7, smiles while enjoying an afternoon snack at her home in Danville, Calif., on Monday, Oct. 14, 2024. June has Down syndrome and the Down Syndrome Connection of the Bay Area helped her parents greatly when they found out her diagnosis. (Jose Carlos Fajardo/Bay Area News Group) For the Lin family, that support and assistance began before June's birth.
Suzanne was in her mid 30s, which put her at risk for a high risk pregnancy – many children with Down syndrome are born to older mothers – but that wasn't even a concern for her when she chose a more advanced test to determine the sex. The couple was looking forward to sharing the news with friends and family, but instead, Suzanne got a phone call saying the couple was being referred to a genetic specialist. Additional testing confirmed the earlier diagnosis.
The doctors at Kaiser gave the Lins a pamphlet for the Down Syndrome Connection of the Bay Area, but it was a while before Suzanne could even bring herself to look at it.
"Everything felt like a dead end," Suzanne says. "There were no right answers."
At 22 weeks pregnant, the Lins still had the option of ending the pregnancy, but they weren't sure they wanted to do that. The floor had dropped out from under them, Suzanne says, but they found surer footing after reaching out, through the Connection, to a mother of an older child with Down syndrome. The woman was honest with them, but also hopeful. She showed not an ounce of regret.
Meanwhile, Mike started making a chart. It showed their fears and concerns, but for every negative, Mike found many positives, including his belief that being June's mom and dad would make them better parents than they might have been otherwise.
June Lin, 7, uses a tablet to communicate with her mom for an afternoon snack at her home in Danville, Calif., on Monday, Oct. 14, 2024. June has Down syndrome and the Down Syndrome Connection of the Bay Area helped her parents greatly when they found out her diagnosis. (Jose Carlos Fajardo/Bay Area News Group) June, now 7, loves Disney princesses, coloring, books and asking "Hey Google, fart." Her younger brother, Oliver, 6, taught her that. When it came time to enter school, the Lins participated in the organization's Communication Readiness Program, which prepares the student and family for what's ahead and provides the children with a way to better communicate with their teachers and fellow students.
The organization gave June an iPad loaded with a speech program. She pushes the buttons and the iPad speaks for her. It has helped her, the Lins say, to step out of the isolation her disabilities can put her in, and to help her speak for herself.
"She has so many ideas and thoughts," Suzanne says, "and sometimes it's about being silly and sharing a joke, and I think a lot of times she has to keep that inside because it's a lot of work to get it out."
Using her voice, the iPad "talker," and sign language, June feels she is being heard, Suzanne says.
Money raised through Share the Spirit will go toward supporting the organization's programs, DeVincenzi says.
"Our goal in everything that we do," DeVincenzi says, "is to try to see each other as humans and to celebrate our abilities because there are so many."
THE SHARE THE SPIRIT SERIES Share the Spirit is a 501(c)(3) nonprofit organization operated by the East Bay Times, The Mercury News and Bay Area News Group that provides relief, hope and opportunities for East Bay residents by helping raise money for nonprofit programs in Alameda and Contra Costa Counties.
WISHDonations will support Down Syndrome Connection of the Bay Area programs, including the nonprofit's Communication Readiness Program, support groups, classes, music therapy, educational webinars and workshops, one-on-one consultations, and welcome gift packages containing information for parents and handmade baby quilts among other items. Goal: $10,000
HOW TO GIVE Go to sharethespiriteastbay.Org/donate or print and mail in this form.
LEARN MOREFind additional stories at sharethespiriteastbay.Org.
Originally Published: December 5, 2024 at 5:45 AM PST
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