What it isn't
Down Syndrome (DS) occurs when cells divide differently in the 21st chromosome. Usually, cells contain 46 chromosomes (23 pairs), but not always. Chromosomes are made up of "bundles of tightly coiled DNA located within the nucleus of almost every cell in our body," and each pairing has one chromosome contributed from the father and one from the mother.
Down Syndrome is the result of an extra, full, or partial copy of chromosome 21. There are three types of Down Syndrome, and the most common (95% of cases) is Trisomy 21. (Mayo Clinic). A little extra chromosomal material in the cell- a full copy or partial copy. It is not contagious. It is not a disease. DS is a difference in cell division. It's a chromosome 21 variance.
"Each person with Down syndrome is an individual — intellectual and developmental problems may be mild, moderate or severe." The effects of Down Syndrome vary; the diagnoses is not the same. Understanding what DS truly is helps us realize what it isn't.
Down Syndrome is an aspect of an individual- not the definition of that person. Individuality is something we choose to celebrate and embrace all the time, and it's something we need to do for people who have DS.
Who it affects
According to the CDC, 1 in 700 babies is born with Down Syndrome each year; which means 6,000 of our sweet babies are affected by DS. And in 2008, researchers estimated that "250,700 children, teens, and adults were living with Down syndrome in the United States." Thousands of smiling babies, students, employees, sons, and daughters. People with real lives who learn they have a diagnosis at birth; and then learn to advocate that they are MORE THAN A DIAGNOSIS throughout life.
Thousands of individuals in our communities who are asking to be accepted and treated fairly; instead of shunned or shamed. People with DS may have a different approach, may think and act differently; but different isn't always bad or less.
National Down Syndrome Society (NDSS) Athlete Ambassador and father Kevin Ashton brings the vast number of people with DS to heart when he says that he runs in order to "bring awareness to the fact that people with disabilities are the largest and most underrepresented minority group in our country."
This minority subsect can teach and share so much with us- if we let them.
Who we know
Lucas Warren became the first Gerber baby representative to have DS in 2018. This past June, Lucas met the original Gerber baby of 1928, Ann Turner Cook, and posed in an adorable photo session. (Watch Inside Edition video here.)
Modeling companies and households worldwide recognize the name Madeline Stewart. Her modeling has grown to 850,000 social media fans. She has gone viral multiple times and "translated that initial success into modelling engagements all around the world, as well as numerous magazine articles, product endorsements and sponsorships." She additionally launched her own clothesline, 21 Reasons Why; which debuted in New York Fashion week in 2017. Her "mission is to continue to spread her message of inclusion; that there are no boundaries regardless of your age, size, race, height, or disability."
Live Action shares about the lives of Angela Bachiller (councilwoman), Megan McCormick (Honors Graduate from Bluegrass Community Technical College), Tim Harris (restaurant owner), Pablo Pineda (writer, speaker, actor), Christian Royal (potter), Bernadette Resha (artist, public speaker, violinist), Michael Johnson (painter), Sujeet Desai (musician), and Melissa Reilly (inspirational speaker) in detail in their article arguing for the viability of people with DS in society. Beyond being an inspirational speaker, Melissa Reilly "is a decorated, gold medal winning skier, cycler, and swimmer and she has interned for a state senator. Melissa also teaches reading and math to preschoolers with Down syndrome. She says she loves her life 100%, and she proves that you can have a very fulfilling life with Down syndrome."
The workforce is expanding, perceptions are evolving, and these amazing entrepreneurs are paving the way.
Moreover, people with DS are boasting more than just impressive careers. Many celebrate lasting and successful marriages. Maryanne and Tommy have been married over 20 years, and have shared their beautiful story with thousands.
Awareness is spreading, and with that, opportunity.
Within not without
Yet, it isn't just the famous we should accept. Often, we need only open our eyes to our own circles and surrounding communities. When we inform ourselves and intentionally choose acceptance, we create a society that no longer fears, but supports.
My good friend Julia vulnerably shares her own DS journey in
Cedar Story's Down Syndrome: I'm thankful for my gift- Moses' Story. Julia reveals that in the beginning, she was overwhelmed by how much she didn't know about DS. She vulnerably shares her heartache as a mother, and how her hopes for her child were overshadowed in fear and uncertainty over the unexpected. But she chose to equip herself, and reached out to the amazing programs available for her family. She re-discovered the joy and blessing of her son. Julia writes: ". . . when I think about Down syndrome I no longer cry tears of sorrow but tears of gratitude. I’m so glad that God knows better than me and that he gave me the child he did. I am proud of my son. I am proud that he has DS. It really has been the biggest blessing in my life. I have been changed for the better. Moses has brought beauty, growth, purpose, and passion into our lives and I would not change him for the world. I would only change the world for him."
Raising a child with DS or having Ds is hard. Unimaginably so. DS creates obstacles. It often comes with therapies, hospital stays, and surgeries. It offers unknown futures. It brings new hurdles and fears, but it also writes beauty into our souls. There is hope in DS.
We need to be a part of the change to support parents and families. We need to spread awareness and model acceptance. Informing ourselves enables us to handle the questions our society and children raise.
What we can do
MARCH 21 has become World Down Syndrome Day; a day for DS organizations to "participate in events to raise public awareness;" and advocates are now celebrating OCTOBER as Down Syndrome Awareness month. Emily explains in Down Syndrome Awareness Association of Greater St. Louis that "throughout October we have the opportunity to extend the celebration and advocacy of Down syndrome to others by promoting awareness and helping them to see the amazing abilities those with Down syndrome possess. By celebrating abilities, rather than disabilities, we can foster inclusion, understanding, and opportunities for individuals with Down syndrome."
The National Down Syndrome Society (NDSS) has a vision of inclusivity, enhanced quality of life, and welcoming communities. To this end, they have created a "national network of 300 affiliate groups across the country, consisting of local parent support groups and other organizations, that provide services to the Down syndrome community." This organization founded the Buddy Walk (1995), which has flourished into the "world's largest and most recognizable Down syndrome awareness program, with 275 Walks taking place in 49 states and 7 countries this year. Every year 250,000 walkers collectively raise approximately $10 million which is used to support local programs and services as well as national initiatives." (Read more here.)
Down Syndrome Association of Northeast Indiana (DSANI) is one such smaller support group. My friend Julia and her family are benefited by this program, and will be attending their second Buddy Walk (Set for September 8th @10am) with team shirts in honor of their son, Moses, #TeamMOSTRONG.
Buddy Walks are an excellent fundraising event because they are open to everyone: "Whether you have Down syndrome, know someone who does or just want to show your support. . ." They are ability inclusive as "Each Walk location has places where you can sit down, relax, and watch the excitement if you choose not to walk. You can also become a member of the cheering section and cheer on the walkers." You can order and design team shirts supporting an individual with DS; and "Each Buddy Walk® is required to give 7% of funds raised to NDSS, which directly supports the NDSS National Policy Center. Allocation of funds will vary from Walk to Walk, but the money raised at every Walk supports both local and national initiatives that benefit people with Down syndrome." (View a map of US locations and dates here.)
Camp Phoenix hosted the first ever Buddy Walk in a combat zone in Kabul, Afghanistan in 2009. In 2013, International Buddy Walks reached "to Istanbul, Turkey, along with more walks in Tokyo, Japan; Auckland, New Zealand, Freeport, Bahamas; Port of Spain, Trinidad and Tobago as well as across Canada." (History of Buddy Walk).
The importance of Buddy Walks connecting families, raising awareness, generating funds for people with DS and legislative initiatives cannot be overstated.
For the DS community, advocacy is paramount in protecting lives.
Why awareness matters
The Charlottle Lozier Institute discussed in April 2015 a study published in the American Journal of Medical Genetics which estimated a 30% decrease in the DS population (based on the available data in the US) due to termination after a prenatal diagnosis. As of August 2017, CSBSN has reported a much higher abortion rate, sharing "the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category."
Advocacy matters because of devastating numbers like this.
Iceland has gone a step further in claiming DS eradication. After a Combination Test with 85% accuracy was introduced in the early 2000s, "the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy." (CBSN : On Assignment.) This eradication is directed toward a group of people.
The term eradication sugar-coats this targeting of a specific people because "deliberate and systemic destruction of a racial, political, or cultural group" is the very definition of genocide.
Charlotte Lozier Institute goes on to conclude that "Whatever the statistical realities may be, the number of those who choose abortion after a prenatal diagnosis is far too high. It should be none. To paraphrase the recently deceased disabilities rights activist, Dr. Adrienne Asch, the only thing prenatal diagnosis can provide is a first impression of who a child will be. Making such a radical decision as to end the life of a child based upon a first impression is a most horrible and violent form of discrimination. It has no place in an American society that is committed to ending discrimination in any form. . ."
Abortion and discrimination are recognized as widely controversial subjects and continue to be disputed issues across our country and the globe. Different starting points and views on what both actually are create passionate arguments among us, but as with all complex issues, we need to discuss the different facets of both. A decrease in a community of people, whatever the amount, is not something that should be overlooked.
When I asked my friend Julia if there was anything she would want people to know or understand about DS, she said:
"As a mother to a toddler with Down Syndrome, the biggest thing I wish I could get people to understand is inclusion. Real, true, inclusion.
The hardest part about having a child with DS hasn’t been the extra doctor's appointments or weekly therapies. It hasn’t been having to learn patience when other children half his age start walking before him. It hasn’t even been having to watch him go through open heart surgery; which let me assure you, was a doozy.
No, the hardest part about having a child with DS is watching him face some sort of discrimination and segregation every single day. Even by the people who mean well. Even on occasion by family members. People talk to him and treat him like he is 2 years younger than his actual age. He has been specifically left out of activities at events we've attended. We have walked down an aisle at target, and when Moses has smiled and waved at passersby, actual adults have just stared at him stoned-faced like he wasn’t worth a smile back.
I wish I could make the world see that in the majority of ways Moses is just like any other toddler his age.
He is adventurous and curious. He’s got hot and cold emotions just like the next kid. He loves trains and cars and playing with his cousins. He loves his mommy and daddy and knows how to add just enough sweet into his sass so that he doesn’t get in trouble.
My point is this: Moses is human and he comes with his own set of thoughts and feelings. He deserves to be treated like everyone else. He deserves to be included. Really truly included in the world.
I think that if we as a society changed the narrative of the way we treat people with DS and made inclusion a bigger priority within each of our own lives - maybe expectant mothers wouldn’t be so afraid when they learn that the child inside of them has an extra Chromosome. And maybe I wouldn’t have been so scared when my son was born."
We have the opportunity to support our friends. To raise awareness. To change the conversation. To join teams like #teamMOSTRONG. To offer support instead of silence.
Because despite the statistics, hope is being found in the many positive movements sweeping across the nation: #theluckyfew and DS supporting arrow tattoo.
Buddy Walks are prevalent. Organizations and individuals are rising and lifting each other up. #downisup
Inclusion begins in our homes.
It starts in our hearts.
Inclusivity is something we must teach ourselves and show others.
With Love,
Rachel