The Extra “Something” of Down Syndrome
Sean Michael Caguiwa and Kate Yvonne Barretto
A myriad of outlooks from Filipinos are cast upon Down’s Syndrome, from the inevitable stigmatization passed down over lower cognitive side effects to the other end of the spectrum that seeks to accept them as functioning members. But, focusing on the latter part of this rainbow spectrum is not just about wearing colorful socks to commemorate the people since chromosomes are shaped akin to one, but a stern testament that continuously honors their invaluable role in today’s changing society.
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March 21st marks World Down Syndrome Day as officially observed by the United Nations since 2012. This selected date is as unique as the people it is celebrating since March—the third month of the year—signifies the three copies of chromosome 21 that linger through the bodies of people with Down Syndrome.
The intricacies encompassed in this issue are complex, yet World Down’s Syndrome Day (WDSD), then and until now, seems like a niche day for some to remember. It is one of the first steps being drilled down and reinforced so that people can be educated regarding the syndrome.
Answering the battle against stigmatization goes beyond just subtle nuances—but a full-blown multitude of acceptances that are farther than what meets the eye. But consequently, what pleases the eye is also a mediator between closed and open minds.
Having this condition is different for each person, some physical signs and intellectual disabilities vary from having mild to moderate effects. Although there is no single standard treatment for Down Syndrome, it is typically offered through early intervention programs such as physical therapy building motor skills, speech-language therapy, emotional and behavioral therapies, and intake of amino acid supplements or drugs that affect brain activity.
According to the Centers for Disease Control and Prevention report (2019), Down Syndrome continues to be the most common chromosomal disorder, with 6,000 babies born with the mentioned condition each year. The number has increased by about 30% from 1979 to 2003.
This extra copy may change how their body and brain develop as they grow up, but this also makes them extra special because of their personality.
As a result, several people commented that the people behind the initiative thought it was done genuinely and accurately. Kayla McKeon, the manager of Grassroots Advocacy with NDSS and the chosen model for the figure, even said that the doll looks exactly like her.
Notwithstanding these types of representation, a 2023 article from CBC News notes that actors like Lily D. Moore, commonly known as Rebecca in the Netflix Comedy Movie “Never Have I Ever," is happy for their representation. But she reminds others to not only view them with pity due to pretenses of being disabled as one-dimensional angels who are supposedly “perpetually innocent.”
When looking at it from a local perspective, the Philippine landscape has its fair share of depictions. From that immortalized feel-good idea that they are just people—ones you can share a good talk with—and are crucial parts in some of the “tambay” talks around barangays.
Despite these facts, memes, or humorous videos, these do not give them the slack and respect they deserve. When it comes to that “stop, stop” video of a person with Down Syndrome in Cebu, which first became popular in the 2010s, especially in 2019, it has undoubtedly made some grin. Still, others saw it as a gateway to expressing ableism or favoring those who are particularly able-bodied. In addition to this, possible reasons like this for certain groups, like the NDSS, are conduits of reason to protest for better representation.
Right off the bat, there's Madeline Stuart, an Australian professional model who has gained recognition at various fashion show events, redefining its standards by advocating diversity on runways. In an interview with POPSUGAR, Stuart shared how she was determined to prove the whole industry wrong.
“There has never been a second when I thought I couldn't do it,” she said.
Despite the medical likelihood of being obese compared to their typically developing peers, Madeline lost weight in the pursuit of becoming a fitter and healthier version of herself for photoshoots. Her love for modeling alone makes her work harder to overcome the obstacles she’ll face in the field.
On the side of notes, there's Sujeet Desai, an accomplished musician with his melodic and expressive contributions through mastering seven instruments, including the B-flat and bass clarinet, alto saxophone, violin, trumpet, piano, and drums. Sujeet became a role model of inspiration with his musical versatility, which pushed boundaries in such an artistic field.
For the voice of the voiceless, Frank Stephens played a huge role as a public spokesman for those with Down Syndrome for many years. He joined the Global Down Syndrome Foundation to attest to the US Congress about the importance of Down Syndrome research. He talked about how cases of abortion of fetuses with the condition plundered morality for Down Syndrome rights.
In our local community, we often notice remarkable members of the spectrum working in fast food companies. For example, there’s Jeremy Lapeña working in a famous pizza parlor shop inspiring young diners by his commendable ability as a crew that despite his limited vocabulary, he goes well with his coworkers and customers. From another branch of the same company, there's Luiza Ellis who has warmed netizen’s hearts after going viral in an interview with Philippine Star sharing how much happiness and excitement her job brings her.
Jeremy and Luiza were just one of the many volunteers of the program under Down Syndrome Association of the Philippines Inc. (DSAPI) wherein they enlist individuals with Down Syndrome to different companies to work as employees, defying potentials and opportunities for inclusivity.
"I've been working with many companies and talking with them about our children and the possibility of gaining employment and actually work experience,” DSAPI chairman Elmer Lapeña said upon the launch of the “Love ‘Em Down” program with the company.
The ongoing assumption of them being impotent and incapable is now slowly being challenged by heroes like them and modifying the presumed narrative that they are burdened to rectify, creating this inclusive community that would allow them to proclaim that they can do something more than extra for society.
Something most of us don't have in extra.
Let us be reminded that one awareness day should not only happen and end for a day. Allowing ourselves to be open with discussions and actually immersing ourselves with knowledge about the spectrum would make a chance to make a much better world for every person of shape, size, and color. Something most of us need in extra.
A myriad of outlooks from Filipinos are cast upon Down’s Syndrome, from the inevitable stigmatization passed down over lower cognitive side effects to the other end of the spectrum that seeks to accept them as functioning members. But, focusing on the latter part of this rainbow spectrum is not just about wearing colorful socks to commemorate the people since chromosomes are shaped akin to one, but a stern testament that continuously honors their invaluable role in today’s changing society.
.png "The Extra “Something” of Down Syndrome")
The intricacies encompassed in this issue are complex, yet World Down’s Syndrome Day (WDSD), then and until now, seems like a niche day for some to remember. It is one of the first steps being drilled down and reinforced so that people can be educated regarding the syndrome.
Answering the battle against stigmatization goes beyond just subtle nuances—but a full-blown multitude of acceptances that are farther than what meets the eye. But consequently, what pleases the eye is also a mediator between closed and open minds.
For starters
Delving into it is easy to understand cases of people with Down Syndrome are capable of having an extra copy of a chromosome, which is also referred to as Trisomy 21. Unlike most people who have 23 pairs of chromosomes within each cell in their body for a total of 46, people with Down Syndrome have 47.Having this condition is different for each person, some physical signs and intellectual disabilities vary from having mild to moderate effects. Although there is no single standard treatment for Down Syndrome, it is typically offered through early intervention programs such as physical therapy building motor skills, speech-language therapy, emotional and behavioral therapies, and intake of amino acid supplements or drugs that affect brain activity.
According to the Centers for Disease Control and Prevention report (2019), Down Syndrome continues to be the most common chromosomal disorder, with 6,000 babies born with the mentioned condition each year. The number has increased by about 30% from 1979 to 2003.
This extra copy may change how their body and brain develop as they grow up, but this also makes them extra special because of their personality.
Media’s help
With the advent of more liberal societies, technology has also come forward amongst users or established conglomerates in coming to terms with the baggage Down Syndrome comes with. For example, the “It Girl” for dolls, Barbie, collaborated with the National Down Syndrome Society (NDSS) to create and promote a toy figurine that accurately represented someone with the condition. And yes, the doll has a round face with smaller ears, almond-shaped and slanted eyes, a shorter frame, and a longer torso.As a result, several people commented that the people behind the initiative thought it was done genuinely and accurately. Kayla McKeon, the manager of Grassroots Advocacy with NDSS and the chosen model for the figure, even said that the doll looks exactly like her.
Notwithstanding these types of representation, a 2023 article from CBC News notes that actors like Lily D. Moore, commonly known as Rebecca in the Netflix Comedy Movie “Never Have I Ever," is happy for their representation. But she reminds others to not only view them with pity due to pretenses of being disabled as one-dimensional angels who are supposedly “perpetually innocent.”
When looking at it from a local perspective, the Philippine landscape has its fair share of depictions. From that immortalized feel-good idea that they are just people—ones you can share a good talk with—and are crucial parts in some of the “tambay” talks around barangays.
Despite these facts, memes, or humorous videos, these do not give them the slack and respect they deserve. When it comes to that “stop, stop” video of a person with Down Syndrome in Cebu, which first became popular in the 2010s, especially in 2019, it has undoubtedly made some grin. Still, others saw it as a gateway to expressing ableism or favoring those who are particularly able-bodied. In addition to this, possible reasons like this for certain groups, like the NDSS, are conduits of reason to protest for better representation.
They won’t let you down
It’s no secret that most talented individuals on the spectrum have become icons in communities and beyond; breaking barriers and challenging stereotypes have uplifted the narrative that they indeed are capable.Right off the bat, there's Madeline Stuart, an Australian professional model who has gained recognition at various fashion show events, redefining its standards by advocating diversity on runways. In an interview with POPSUGAR, Stuart shared how she was determined to prove the whole industry wrong.
“There has never been a second when I thought I couldn't do it,” she said.
Despite the medical likelihood of being obese compared to their typically developing peers, Madeline lost weight in the pursuit of becoming a fitter and healthier version of herself for photoshoots. Her love for modeling alone makes her work harder to overcome the obstacles she’ll face in the field.
On the side of notes, there's Sujeet Desai, an accomplished musician with his melodic and expressive contributions through mastering seven instruments, including the B-flat and bass clarinet, alto saxophone, violin, trumpet, piano, and drums. Sujeet became a role model of inspiration with his musical versatility, which pushed boundaries in such an artistic field.
For the voice of the voiceless, Frank Stephens played a huge role as a public spokesman for those with Down Syndrome for many years. He joined the Global Down Syndrome Foundation to attest to the US Congress about the importance of Down Syndrome research. He talked about how cases of abortion of fetuses with the condition plundered morality for Down Syndrome rights.
In our local community, we often notice remarkable members of the spectrum working in fast food companies. For example, there’s Jeremy Lapeña working in a famous pizza parlor shop inspiring young diners by his commendable ability as a crew that despite his limited vocabulary, he goes well with his coworkers and customers. From another branch of the same company, there's Luiza Ellis who has warmed netizen’s hearts after going viral in an interview with Philippine Star sharing how much happiness and excitement her job brings her.
Jeremy and Luiza were just one of the many volunteers of the program under Down Syndrome Association of the Philippines Inc. (DSAPI) wherein they enlist individuals with Down Syndrome to different companies to work as employees, defying potentials and opportunities for inclusivity.
"I've been working with many companies and talking with them about our children and the possibility of gaining employment and actually work experience,” DSAPI chairman Elmer Lapeña said upon the launch of the “Love ‘Em Down” program with the company.
The ongoing assumption of them being impotent and incapable is now slowly being challenged by heroes like them and modifying the presumed narrative that they are burdened to rectify, creating this inclusive community that would allow them to proclaim that they can do something more than extra for society.
Something most of us don't have in extra.
Let us be reminded that one awareness day should not only happen and end for a day. Allowing ourselves to be open with discussions and actually immersing ourselves with knowledge about the spectrum would make a chance to make a much better world for every person of shape, size, and color. Something most of us need in extra.