Down Syndrome

Community Voices

khshkshkebkbd @khshkshkebkbd

I’m new here!

Hi, my name is khshkshkebkbd. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether #ADHD #Schizophrenia #BipolarDisorder #DownSyndrome #Anxiety

Nancy Binger @nancy-binger

contributor

Envisioning a Bright Future for People With Down Syndrome

When I received a prenatal Down syndrome diagnosis for my unborn son, it was one of the hardest days of my life. My world halted that day. My hopes and dreams for my son froze. I was frozen by fear and uncertainty. But today, six years later, I am not grieving that day but celebrating it. Not only did my world not freeze, but it activated a whole new part of my life. That day launched me into the beautiful world of knowing and loving people with Down syndrome. My son is a life worth living and celebrating. He has value and purpose, many strengths and talents, and he is capable of so much more than what any diagnosis says. Every day our family and friends experience a beautiful soul that inspires and motivates us all. We do not feel sorry for him or settle for a life less full. We dream big for him and have conversations about a thriving future just like we do for our other kids. We love that he has Down syndrome, but it does not define him. As we move into the future, I long for more hopeful, positive diagnosis deliveries from doctors and nurses; more planning of futures with high expectations and purpose by parents; more inclusion in schools and more employers offering competitive employment to people with Down syndrome. We need to look beyond the Down syndrome diagnosis so that hopes and dreams become a reality in an inclusive society. There is no doubt the world is a better place with people with Down syndrome in it. My dream is that we all come together to make the world a better place for them to thrive in so they can live with purpose well beyond their diagnosis.

Be first

Save

Community Voices

halinaAndroid @halinaandroid

Ghhfdvb #DownSyndrome

Ghjsdf #AS

How an Actor With Down Syndrome Inspired ‘The Peanut Butter Falcon’

For filmmakers Michael Schwartz and Tyler Nilson, the inspiration for their new film “The Peanut Butter Falcon” came from one person: Zack Gottsagen, a 34-year-old actor with Down syndrome. The two had originally met Gottsagen while volunteering at a camp for actors with disabilities, where they worked with him on the 2012 short film “Bulletproof Jackson.” It was there that they first witnessed his strength as an actor. “It was really fun watching actors go up against him, and Zack was making decisions that were phenomenal, like really, really mindful and present decisions that I hadn’t seen other actors do before,” Schwartz told The Mighty. As it turned out, acting wasn’t just a hobby for Gottsagen — he first began studying acting when he was 3 years old, he attended a performing arts high school, teaches acting, and even works in a movie theater. Schwartz and Nilson remained friends with Gottsagen after camp, and while talking one night about, as Nilson put it, “life and love and dreams and hopes and desires and goals and frustrations and the things that people get to talking about at night around the campfire,” Gottsagen revealed that his big dream was to be a movie star. Schwartz and Nilson, who had only directed short films until that point, were already considering stretching their creative juices into a feature-length film, and realized the opportunity they had. But they warned Gottsagen of the obstacles they were up against. It’s challenging enough to get any movie made, and most movies featuring actors with Down syndrome relegate them to supporting roles. A 2016 study by the Ruderman Family Foundation found that able-bodied actors play 95% of characters with disabilities in the top 10 TV shows. “We just told him, here’s the here’s the impossibility factor, and Zack said let’s defeat the impossible by making it possible together,” Nilson told The Mighty. So over the next year, the trio worked to craft a story that played to Gottsagen’s personality and strengths, and would allow him to stretch as an actor. Schwartz and Nilson checked out books from the library about how to make movies, went on a road trip for inspiration, and spent hours talking with Gottsagen about his life and experiences. What they ended up with was a Mark Twain-esque road movie, in which Gottsagen’s character (named, fittingly, Zak) runs away from his assisted living facility to go after his dream of becoming a professional wrestler. Along the way he meets Tyler (played by Shia LaBeouf), a small-time outlaw also on the run, who becomes an unlikely ally. They’re also joined by Eleanor (played by Dakota Johnson), an employee at Zak’s home who finds herself helping Zak and Tyler on their quest. While crafting the story and even the dialogue, Schwartz and Nilson kept coming back to Gottsagen and what he actually felt and would say. They chose to center the film around wrestling because Gottsagen loves it, and added lines they had already heard him say. There’s a scene in the movie where Zak explains to Tyler, “I don’t know if you know this, but I’m a Down syndrome person.” That’s exactly what Gottsagen said to Nilson one night, after Gottsagen went off to party with people he had just met. “I was sort of like, ‘I can’t sleep, I was worried about you.’ And he’s like, ‘Oh, you must not understand, Tyler, you must not know, I have Down syndrome, I get along with everybody,’” Nilson said. “I said, ‘Zack, I know you have Down syndrome. You’re one of my best friends. I’ve known you for three years.’ And he said, ‘Oh, I just didn’t know if you knew I had Down syndrome.’” “People have asked us if it’s ‘person-first’ versus ‘disability-first,’” Schwartz added, referring to the often-debated question of whether to refer to someone as a “person with a disability” (“person first”) or “disabled person” (“disability first”). “He said, ‘I am a Down syndrome person.’ That’s the way he said it. So it was like, ‘Zack, how do you say it?’ And then [we’d] say it like that.” In a world where so many filmmakers don’t consult with people who have disabilities while writing and filming movies about people with disabilities, Schwartz and Nilson say that’s how they got their portrayal of Down syndrome “right” — by drawing directly from Gottsagen. Gottsagen also improvised some lines himself while filming, for example, the line in which his character explains his life philosophy: “Rule number one is party.” That attitude carried over to the set, which they described as similar to hanging out with your best friend and “like summer camp.” One of the most commonly-cited reasons for not hiring actors with disabilities is the belief that filming with them will be “too hard,” but Nilson and Schwartz maintained that while working with Gottsagen required one “handcrafted” approach, so did working with LaBeouf and Johnson. The set was a loving environment, Schwartz said — and Gottsagen was at the center of it, particularly during downtime between camera setups. “Zack would grab the bullhorn from the guy that had the bullhorn on set, and he would say, ‘I’d just like to say that Bruce Dern is my favorite actor right now and it’s great that everybody came out, and thank you so much for being here. If we could have a group hug!’ and everyone would have a group hug,” Schwartz remembered. Despite their resolve to make a movie starring Gottsagen, the duo still had to convince financiers and producers that casting him was the right decision. They were offered money to cast an established star without Down syndrome, but they turned it down. Casting Gottsagen would not only make for a better, more authentic movie, but it would also lead to more business, they believed. There is a sense in the film industry that having able-bodied actors portray characters with disabilities is “how it’s always been done,” and Schwartz acknowledged that re-thinking this firmly established process can be challenging. But he urged filmmakers to consider how casting actors with disabilities actually gives them the chance to stand out. “I would just say, ‘Take a step back and see if these roadblocks that you’re creating can actually be creative opportunities to do something different and unique,” he said. With Gottsagen in the lead role, Nilson and Schwartz hope “The Peanut Butter Falcon” shows a more human, nuanced, layered view of Down syndrome than audiences may have been familiar with. Based on the feedback they’ve already gotten, it appears it’s already busting stereotypes. There’s the mom who said she is excited for people to see the film and perhaps become more open to hiring her son who has a developmental disability, and Schwartz’s friend, who told him after seeing the film, “Wow, I didn’t know people with Down syndrome got frustrated or had dreams or ambitions.” “I’m proud of the way our movie shows the complete range of emotions for a person with Down syndrome, and that Zack does play a character with hopes, dreams, aspirations, frustrations, work ethic, fear, excitement,” Schwartz said. “That’s a lot of a lot of range, and even a performance for him to hit all those notes is really fantastic.” “More than any Marvel film I’ve seen,” Nilson added. The Peanut Butter Falcon will be released in select theaters on August 9. GET TICKETS HERE

Be first

3

Save

Daniel Graups @daniel

staff

Chronic Pain, Disability, Ehlers Danlos Syndrome

Anxiety Depression Mental Health Bipolar Disorder Chronic Pain Autism Fibromyalgia Borderline Personality Disorder Disability Migraine Rare Disease Rheumatoid Arthritis Epilepsy Cancer Chronic Illness Down Syndrome Crohns Disease Multiple Sclerosis PTSD Staff Breast Cancer Lyme Disease Suicide News Check In With Me Parenting 52 Small Things Ehlers Danlos Syndrome Eating Disorders Lung Cancer Mental Health, Chronic Pain, Disability, Chronic Illness, Ehlers Danlos Syndrome, Suicide, Parenting, Eating Disorders, Rare Disease

Envisioning a Bright Future for People With Down Syndrome

How an Actor With Down Syndrome Inspired ‘The Peanut Butter Falcon’

Chronic Pain, Disability, Ehlers Danlos Syndrome

Feed for Down Syndrome