Ever yearCoorDown, an Italian organization that advocates for people with Down syndrome, releases a World Down Syndrome Day (March 21) video. In this year’s (below), you see a montage of actress Olivia Wilde while another’s voice describes her hopes, dreams and challenges.
In the last few seconds, we realize that voice belongs to AnnaRose Rubright, a 19-year-old with Down syndrome. She asks, “How do you see me?”
Rubright is a full-time college student at Rowan College at Burlington County in Pemberton, New Jersey. She works part-time at Breakthru Physical Therapy and Fitness in Medford, New Jersey, and is a Special Olympics athlete.
This World Down Syndrome Day, let’s make an effort to raise awareness and end stereotypes about Down syndrome. People like Rubright have the same aspirations and experience the same feelings as anyone else. They’re already contributing to society in important ways, so it’s time to put an end to preconceived notions.
To learn more about people with Down syndrome, you can check out these resources and organizations:
Teespring.com is a “user-generated platform,” meaning anyone can design and sell a shirt on it.
“This t-shirt makes my blood boil,” Taylor wrote in her petition. “My baby is not something to ‘survive.’ I often [wonder] how I survived without her. Please help make awareness that this is not OK and should not be sold.”
Thomas, who has a 1-year-old daughter with Down syndrome, contacted TeeSpring about the shirt and says she received this response:
Thank you for providing me with that information and thank you for getting in touch and bringing this matter to our attention. We apologize to those who may be offended by content posted on Teespring.
Teespring is a user-generated platform where people from around the world create various designs to express their views, interests, and opinions on a number of different issues. We strive to maintain a platform for free expression, even in cases where we don’t condone or agree with the views and opinions expressed by our users.
Despite this response, Teespring.com’s content guidelines say the company does not allow hate speech:
We do not allow campaigns that promote or glorify hatred toward people based on their age, race, ethnicity, national origin, gender, gender identity, sexual orientation, disability and religion, including people, organizations or symbols dedicated to hatred against these groups. Additionally, we will not allow campaigns including content that bullies, attacks or threatens specific individuals.
By Monday evening, Thomas’ petition had reached 983 signatures.
Teespring.com has not yet responded to The Mighty’s inquiry.
In October, when Sarah Risko was browsing a different user-generated T-shirt site, SunFrog Shirts, she came across a shirt that read “I freaking hate adults with disabilities.” Risko, who has four learning disabilities and fine/gross motor dysfunction from undergoing chemotherapy as a child, reached out to the company and demanded the shirt be removed. Eventually, she won. A SunFrog Shirts representative responded to The Mighty saying the shirt had been removed and apologizing for the incident.
I sat at my own table, pretending to be engrossed in other things, while my classmates chattered, giggling like everything was OK. But the topic of discussion that filled those four walls that day made the room very dark in my memories.
I sat there alone in a room full of girls belittling people with Down syndrome. The discussion began with an actress who has Down syndrome who played a role on a famous television show. Giggly voices filled the dark room and their comments showed no kindness towards that actress, claiming her Down syndrome ruins the show entirely. Moving forward, to the general topic of their chatter, one girl expressed her inability to understand the reasoning behind G*d creating people with Down syndrome. The discussion went on with hurtful words that remain in my memory of that dark classroom.
And I sat there, watching my teacher, waiting for her to speak up. In those moments, tears journeyed down my cheeks sprinkling my notebook with disappointment — disappointment in those girls for their discussion that etched so much hurt in my mind, but even more so towards that teacher who kept quiet.
The difference between the silent me of the past and the outspoken me of today is that when I sat there crying to myself in the darkness of that classroom, I could not find the words to tell those girls that my brother, Chaim, has Down syndrome and explain to them how wrong they were.
Today, I keep that memory accessible in my mind where I can use that silent moment to push myself and stand up for Chaim in my day-to-day encounters. I couldn’t then, but I can now. I can stand up for the fact that people with Down syndrome work hard to be successful and make their place in the world.
I speak up in situations that constantly parallel those girls. The difference is: the people I tell now are older and seemingly more mature. Yet the echoes of that dark classroom find their way into today’s world despite the age difference. Perhaps it’s because of people like that teacher, who sat silently instead of teaching those girls about acceptance and the value of every person created. And so the situations I defend my brother in are generally filled with older versions of those who may never have been taught better.
Now I can speak up and say clearly: My brother Chaim has Down syndrome, and each year that goes by makes all of the difference in who he is and how much of an impact he makes in the world. Chaim, and every other person with Down syndrome, is not “worthless,” like those girls labeled him in the darkness of that classroom. But rather he is accomplished, and worthy of the life I believe G*d gave him.
The Mighty is asking the following: Describe a moment you were met with negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded.If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
My son Kaleb continues to do well. I marvel at his strength and attitude as I think about
this 2-pound, 2-ounce baby who was born at 28 weeks and then surprised us further two days later when he learned of his Down syndrome diagnosis. After 14 weeks in the neonatal intensive care unit (NICU) we have been home for two months. Therapy and specialist appointments continue to be a norm for us. It is safe to say Kaleb continues to teach me parenting and life from a new perspective.
I’ll be the first to admit how easy it is to “mompete” (compete and compare myself against other moms). Of course, social media and especially Pinterest make it easy to do. At times it can make you feel pretty good about yourself, and at other times very discouraged and like you just can’t measure up. I’m not sure why we do this; it’s not fair to us as parents or to our children.
The other night my 3-year-old, Kaden, and I were reading a book before bed. He was upset that Kaleb fell asleep before they could read their two bedtime books together, so he had to be content with reading with Momma instead. While we were reading the book “I Love You Through and Through,” I noticed he kept talking about the teddy bear. To be honest in the three years that we have read the book, I never gave the teddy bear a second thought. To me, the book is all about the little boy. Kaden thought it was about the teddy bear (he loves his stuffed animals). He showed me the book from another side, another perspective.
That has been Kaleb in my life. He has shown me a different perspective, another view of parenting and life. Even though right after learning of his diagnosis, I feared our life would change drastically, I realize it is the same life. I am now just able to see it with new eyes and a new perspective. He has shown me not to get so caught up with “the rules” or how others are doing.
Kaleb came out of the womb saying he does not follow anyone’s rule book and is writing his own. I can’t get wrapped up in the timeline of hitting milestones or trying to measure his progress against others. He has and continues to teach me to just step back and simply enjoy and be grateful for the miracle that is Kaleb. To enjoy baby snuggles, that yes, come with a few more wires due to his premature birth, and to celebrate each and every achievement with him. After receiving the diagnosis of Down syndrome, someone told me that each milestone is that much sweeter once they reach it. Already at his young age I’m realizing how true this is. It has allowed me to view parenting from a new perspective, that it is not about a parenting measuring stick. I work to continue to simply cherish him and experience life from a new perspective.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about?If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
I can’t. I cringe every time I hear the word. My thoughts just stop, and in that moment I’m numb. I know I’m no one’s mother, and I know I can’t erase the word from everyone’s vocabularies. I just want people to stop and think about what they say when that disgusting word leaves their lips. It breaks my heart, but I don’t freak out on the person when they don’t know any better (but they do know better). I calmly say, “That’s not a nice word,” and usually people can see/ feel how much that word hurts me. What’s your intention when you call someone or something “retarded”? There’s something wrong with you if you can’t figure out another word to describe your frustration.
My godson Gerry just turned 12 years old. He has Down syndrome. I’m sure you’ve heard of it but might not know what it even means. I can’t lie and say I even knew what that was before he was born. Doctors don’t know why babies are born with an extra 21st chromosome, but they do know it’s not hereditary. One in every 691 babies in the the U.S. is born with Down syndrome, making it the most common genetic condition. In 1910, the life expectancy of a child with Down Syndrome was 9 years old. Today, 80 percent of adults with Down syndrome live to reach their 60s and even pass it. Like anyone else, each person with Down Syndrome has their own strengths and weaknesses.
Gerry can’t talk yet; he’s being taught sign language and uses his iPad to communicate what he wants and how he feels. You’ll know when he’s happy or sad or wants more of something. He gets better at communicating every day! It’s amazing how much he’s learned since he went to a new school. Gerry changed my life and his family’s lives. He’s hilarious and he loves to play and run and hug people. Oh, and he loves his Spongebob DVDs. He greets everyone when he walks in and out of a room, and he never forgets a face.
I remember one time when I was very young and at a park with my brother. It was time to go so we were piling in the car and I didn’t notice who else was at the playground until I was sitting still in my car. There was a little boy who had Down syndrome and was playing with either his sister or friend. He was kneeling down in the rubber mulch and had sneakers on. There were three other kids around him asking him to count how many toes he had. The little boy seemed excited to show he knew how to count while the other kids made fun of him and teased him that he didn’t automatically know how many toes he had. Every time I hear someone use the R-word I think about how hurtful this moment was to watch. When you use that word, you’re hurting people like my Godson and that boy at the park, and everyone who is their friend or family. To this day, I wish I’d jumped out of my car and said something to those kids.
Don’t feel bad for Gerry, though. He’s the luckiest little boy. He has an amazing mom and dad and two extraordinary brothers who help protect him. His whole town knows him and greets him whenever they see him. He’s being taught by aides and teachers who genuinely care for him and his education.
It’s time to grow up. I’m not saying I’m a saint, but one thing I can do is lend a hand in spreading the word to end the word. I feel strongly about this, and I can promise you I always will. I gave a pledge to not use the R-word. Sign here and take the pledge too.