Casey Rochell, a U.K.-based DJ is using his mixing skills to turn a negative message about people with Down syndrome into a positive one.
Rochell, 23, remixed a quote from Joseph Fletcher, an ethicist, who in 1968 said, “There is no need to feel guilty about putting a Down syndrome child away. True guilt arises only from an offense against a person, and a Downs is not a person.”
Rochell’s message? “Downs is a person. A person,” the remixed version of the audio clip says.
“A lot of people might not expect me to mix records, but I’ve been doing this for a long time,” Rochell told The Huddersfield Daily Examiner. “I want this video to change how people think about learning disability.”
The track was produced as part of U.K. learning disability charity Mencap’s “Here I Am” campaign, which seeks to bring visibility to learning disabilities. The campaign also features a photo series of people with learning disabilities.
Being that it’s October and Down Syndrome Awareness Month, I couldn’t help but relive our diagnosis process in my head. After all, it’s what got us here in the first place. I wrote this letter for those who haven’t embarked on their journeys yet, so closely recalling the start of my own…
Dear parent who just received a prenatal Down syndrome diagnosis,
Take a deep breath.
I’m one of many you will meet on your journey who was once in your exact position.
Your phone rings, and your obstetrician meets your “Hello?” with an “I’m sorry.” You’ve been feeling great, and you haven’t had much reason to worry. But thinking back, the ultrasound tech wasn’t so quiet for no reason. She didn’t rush to take her photos, and at one point left the room for quite some time. And you were so focused on seeing that precious profile anyway, so you tried not to mind her.
He asks you to come in. “Right away if you’re close.” You’re met at the office by a strange woman you haven’t met before. She’s a geneticist. And she’s about to ramble off more information than you can ever imagine. And through the many scenarios, you listen intently, but never retain a word.
Your cheeks are tear-stained, and you’re scared. And they request more blood, so you oblige. You’re praying, and in that moment, you’re so incredibly numb.
They said it would be 10 days. 10 days before “it’s highly likely” turns into “we can nearly guarantee.” In those 10 days, it feels like a lifetime has passed for you. You comb through the internet mercilessly. (Don’t do that.)
The third test they run is enough to give you an answer. But they can’t say it’s definitive. They will do that when baby arrives. Would you like to know who you are carrying?
You’re dying to know.
So you pack up shop and head to the city where that little envelope awaits you. Your devastation is clouded with so many other emotions that you’re unsure of what to call it. And it’s OK. It’ll be like that for days. But for now, you will try to celebrate.
That night, your home is filled with the closest family and a couple friends. Your living room is filled with love, and screeches. Pink confetti fill the air. A little girl. You’re so happy. They’re the only ones who will know for the following seven weeks. You’re not ready to tell the world just yet, but you will. And you will be stormed with support.
After all, you have so much to celebrate. You just don’t know it yet. But you will soon.
In the five months that pass, you learn more than your brain ever will filter. Throw away the folders and pamphlets. Tuck away the books. Your best friends are coming, and they will become your greatest resources. They’re online, all over the country. But they will be there. They will never let you down. These people will become your family. And I promise, you will never experience anything alone.
You see, these people live parallel lives. That’s how you will learn.
And as soon as they hand you that beautiful girl, everything you thought you knew about this journey goes right out the window.
That perfect, beautiful baby is suddenly yours.
Those short, stubby fingers, those extra soft cheeks, those beautiful, almond-shaped eyes, that single-crease palm, that beautiful latch you know she is working extra hard for… is all yours.
And then you will blink and the first year will be drawing to an end. You will relish in the champagne moments you have achieved together. You will look back on the days when everything began, and you can sympathize with those new parents sitting in that office. But you came through it. And sometimes you wonder what you were so afraid for.
This journey is truly the best. That’s not to say some days won’t be hard. But all you can do for them is pray everything turns out, as it has for you.
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Two years after you delivered the news that our son would be born with Down syndrome, I still struggle when reliving that surreal 20 minutes in your white-walled office.
In fact, I blocked the memory out for a while. My mother had to remind me of the things you said that day for your words to resurface.
My husband and I knew when you told us to come back into your office, that the news from our noninvasive prenatal screening was not what we were hoping to receive. My pregnant body fell to the ground when I got the phone call. After gathering myself, I helped my husband get out of his constricting military uniform as he became ill.
We didn’t know much about Down syndrome. Turns out, neither did you.
Once I sat on your table covered in crinkled paper, you told us that there was a 99.9% chance that our son had Down syndrome and we had one of two options: abort or continue the pregnancy — never offering further testing.
When I asked you what Down syndrome meant for our child’s life, you said this: “At worst he will
never be able to feed himself, at best he will mop the floors of a fast-food restaurant one day.”
That was it. The entire talk about his actual diagnosis was made up of arbitrary limitations, deemed by you.
But you told me not to worry because if I wanted to continue the pregnancy, you had a solution: “You
don’t have to be a hero. You can have the baby here, we can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” Your tone said the right thing to do, if I couldn’t go through with the termination, was to let our son die. You decided his life was one not worth living, even though it was not your choice to make.
Dear doctor, you failed me. You failed me because you chose not to follow the nationally recognized guidelines that are in place on how to deliver a Down syndrome diagnosis. The guidelines state that medical professionals should present both the negative and positive aspects of a life with Down syndrome, and do so in an unbiased manner.
Unfortunately you are not alone. A 2013 study found for every one parent who had a positive diagnosis experience, there were two and a half parents who had a negative one. That same study found that almost one in four families with a prenatal Down syndrome diagnosis had a medical professional who
was insistent on terminating.
Although I don’t expect you to know as much as a specialist about Down syndrome, I’m asking you to learn some basics about the most common chromosomal condition in the world. Tell your patients the possible medical complications, but also tell them about the therapies available today. Tell them about the possible developmental delays, but also tell them that many children with Down syndrome are now included in the general classroom setting, and hundreds of college programs are now available.
No one can predict another human being’s future. No one can define another person’s worth. An extra chromosome may bring more challenges, but like all challenges, it also holds the potential for extraordinary opportunities.
As an OB-GYN with decades of experience, I know I was not your first patient to receive this diagnosis and I will not be the last. You must do better. Lives are depending on it. Not just the lives of babies with Down syndrome, but also the lives of your patients who will forever be affected by the decision they make.
October is Down Syndrome Awareness Month. This letter is part of the Down Syndrome Diagnosis Network’s #DearDoctor campaign. The purpose of this campaign is to raise awareness that there are nationally recognized guidelines in place on how to deliver a Down syndrome diagnosis — with current information and without bias.
You can let your doctor know how they did delivering the diagnosis by participating in DSDN’s Physician Feedback Program. If you are a parent of a young child with Down syndrome, connect with DSDN for information, connections and support.
We want to hear your story. Become a Mighty contributor here.
Update: On October 25, Asher Nash and his family met with OshKosh B’gosh, and Asher will be modeling in the company’s holiday advertising.
Asher Nash is breaking the internet. In less than a week, a photograph of the 15-month-old has racked up over 59,000 likes and 79,000 shares on Facebook. Now, his mom, Meagan Nash, is asking children’s retailer OshKosh B’gosh to feature him in one of its advertising campaigns.
“I would love for OshKosh to meet my son and see what we see in him,” Nash told The Mighty. “I don’t want them to use him because of this fuss we are making on the internet. I want them to use him because they value him and see how much he could contribute to their advertisement. Children with Down syndrome and other disabilities are incredible human beings, and we want OshKosh to want to help change the world’s perception.”
While retailers and designers like Target, Kmart and Tommy Hilfiger have moved towards more inclusive advertising, people with disabilities are still widely underrepresented in the media.
“With 157 million companies in the world and still only a handful that include the consumers who have disabilities, we have a lot of work to do,” Kathryn Driscoll, founder of Changing The Face of Beauty, told The Mighty. “We… believe brands can empower the future of the disability community by valuing them as consumers in advertising. One in five families have someone with a disability in their immediate family. That is 20 percent of the population brands like OshKosh are not communicating to.”
Nash, who lives with her family in Georgia, hopes Carter’s, Inc., the parent company of OshKosh B’gosh, also headquartered in Georgia, will respond to her request, and include children with disabilities in its advertising. “Without truly accepting my son and others with special needs, there can be no inclusion for them in the future,” Nash said. “It is time we realize they are not ‘just a trend’ that comes and goes in advertisement. They are here to stay!”
First, we get to celebrate the birth of my daughter KC and the incredible blessing she is to our family. Second, it’s Down Syndrome Awareness Month!
You may wonder why that’s a thing and why I’d be excited to spend a whole month spreading awareness, and to answer that I’d like to share a recent encounter we had.
A couple months ago we went on a quick grown-ups trip to Savannah with friends to celebrate my birthday. Our first day there we booked a nighttime ghost tour. We were about 20 minutes into our tour and the guide was telling us a story about someone born who was different. Story was the man was buried in the cemetery near us and still haunts the area. Our tour guide described this abnormal man by saying, “He didn’t have anything real serious. Not like Down syndrome. God forbid!”
Ugh! My heart sank when I heard those words. I wanted to give him a piece of my mind right then and there, but instead I made eyes at our group and we all agreed we were finished with the tour and so we walked off. We emailed the company later to let them know why we left. We didn’t send them an angry letter or ask for a refund. We truly just wanted to educate them on how “not serious” or “God forbidden” Down syndrome is. We wanted them to understand they can tell their story and make the same points with being offensive.
I spent the next few days stewing over the encounter. This man thought a Down syndrome diagnosis was the worst thing a person could have. Let that sink in for a moment. My thoughts next moved to the fact that KC’s heart defect was something I’d put the in the “real serious” category along with her very premature arrival into this world but not her extra chromosome. And as far as the “God forbidden” part goes, I actually believe God created her with 47 chromosomes. I believe she was “fearfully and wonderfully made.”
Even if you don’t share that belief with me, I feel that you couldn’t know KC and not accept that her life has meaning. She has defied all odds just to be where she is today, and I believe it is because she was created with purpose that she continues to soldier on.
I always like to share a little bit about KC just to make it apparent how much like any other little kid she is. She’s seriously smart, has an incredible memory, currently loves all things Olaf, can give the warmest embraces on the planet, loves to tell jokes and make people laugh, can sing potty language words to the tune of just about any song imaginable, is super picky about her shoes, loves all kinds of food, makes a game of sneaking my coffee and thinks the Cha Cha Slide was created just for her. Down syndrome is definitely a part of her, but it is not all of her. There is really no reason the words “God forbidden” should be used in connection to her diagnosis. Her diagnosis does not scare me. Her extra chromosome doesn’t keep me up at night or make me question her creator. It’s the fact that there are people who would describe her extra chromosome as the worst-case scenario in terms of diagnosis that terrifies and saddens me. Some days it even angers me, but I’ve found an angered response is least effective.
Although the company we emailed about the offensive remarks did not respond with care or remorse, this post isn’t about putting this man in his place or teaching him a lesson or boycotting his business. It doesn’t seem likely we’ve changed this tour guide’s opinion about Down syndrome, but I do appreciate how experiences like this always cause me to reflect and give me opportunity to inform. I read a quote one time that said, “Sometimes the things we can’t change end up changing us.”
This right here is the reason I write about our experience, and this is why this month means so much to me. My best defenses against these scenarios are love and education. There was a time when I was completely uneducated and surely made offensive comments about disabilities I didn’t understand. However, KC’s existence has taught me more than I ever imagined. The love she brings has changed our lives, and she has brought us into a community of chromosomally enhanced friends and their families that would all agree their lives have taken a turn they didn’t expect but all for the better.
Unfortunately these types of offensive comments in regards to Down syndrome are inevitable. But I think it’s important the world doesn’t see a community constantly offended and in uproar, spewing hateful remarks over ignorant words. I much prefer they see our Down syndrome community so tightly bound with the unconditional love we’ve been able to experience through our little blessings, that we can educate when possible and move on with the confidence that we have been given the perfect kid for us.
I’m so proud to be KC’s mom, and I’m thankful I get the opportunity to share what we’ve learned with the hopes that misconceptions will continue to be changed. Yes, she has an extra chromosome, but the thing that stands our most is that she’s a little girl, sometimes naughty, always full of personality and above all the most “real serious” things about her is that she is a worthy and capable enhancement to our world.
Down Syndrome Awareness Month exists so we can celebrate the abilities and accomplishments of individuals with Down syndrome. We honor this month so we can show the rest of the world these individuals are more than their disabilities. From a young age, these people are often told their disability will hinder them and they will accomplish very little. We are here to help prove the doubters wrong.
My mother had my brother, Derek, when she was 32 years old. The doctors prepared her and my dad, saying there were signs Derek had Down syndrome. No one was quite sure yet, but it was just something they should be prepared for. It wasn’t confirmed until my brother’s first checkup.
As parents having their first child, there were so many different emotions going through their minds when they heard this news. In the midst of the fear and confusion, my parents chose one emotion to overpower them all: love. It didn’t matter that Derek had Down syndrome because he was still their son, and they were sure his abilities would outshine his disability.
The rest of the world, however, seemed to be against Derek. When my mom brought him to his potential first school for an evaluation, the person was pessimistic, to say the least. She told my mom Derek would never walk, talk, or function like a “normal” human being. She looked my mom in the eyes and told her Derek would forever be incapable.
Derek grew up to prove that lady wrong. He is a hyper 21-year-old who never stops talking. He has catchphrases he says when someone does something funny and others when he’s upset. His athletic abilities are through the roof. Not only does Derek walk, but he runs, plays basketball, baseball, and rides his three-wheeled bike. It was as if Derek heard that lady limiting him and decided he would grow up to show her otherwise.
Derek is my best friend. He has inspired me to pursue a career in special education and has encouraged me to be the best person I can be. We share the same taste in music and movies, and the things that make him laugh always make me too. I have seen him grow from someone who shut down when I cried to someone who holds my hand through my tears. I have seen him grow from someone afraid of the telephone to someone maintaining conversations with me for 10 minutes just to tell me about his day. The same kid who the world was against is now taking the reins and making this life his own.
I am proud of Derek. I am proud of the things he has accomplished and the man he has become. He infuriates me, like any brother would, but he also loves me deeply. I wouldn’t trade him for any other man in the whole world. Going to college seven hours away from him is one of the hardest things I’ve ever done, but the hug he gives me and the smile on his face whenever I return for a visit makes it all worth it.
There are still people in the world who are doubters. They think Derek, and everyone like him, won’t amount to much of anything. It’s our job as members of this community to share stories like this one. I’m excited to see what things Derek does in his future because it’s clear to me he’s still working to prove everyone wrong.
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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!